Over the years this has become much more than just a description of one child's adhd. The blog has expanded to cover many physical and psychological conditions that have affected my family, including headaches, asthma, learning disabilities, teen pregnancy, adoption, unemployment, drugs, jail, bankruptcy, and family dynamics. There's a lot going on, an dat times we are stressed to the limit.
Don't assume, based upon the above paragraph, that I am steadfastly anti-drug. I am certainly not. In fact I am all too cognizant of the longitudinal studies that connect untreated ADHD with addictions and criminal activity in later life. All too cognizant, as my son sits in jail for possession of a controlled substance. All too cognizant, as he must admit to a felony on every housing and employment application for the rest of his life. All too cognizant. If ADHD can be controlled in any way possible, the life outcome is better. The primary goal is treating the condition effectively; the secondary goal is minimizing short term and long term side effects. Of course those side effects are hard to predict at the outset. My son's liver was very weak, and susceptible to damage from ongoing drug regimens, but we did not have access to his medical history until much later. So I gave him ritalin, and other meds, and they even helped for a while. But then they stopped working, and side-effects began to appear. If a prescribed medication works for you or your child that's great, but we had to find another way.
after reading all the chapters of this tome, which describes years of contradictory theories and inconsistent results, a hapless parent sent me the following email.
|Your article is honest and well written. I am now convinced that my daughter has a serious behavioral disorder, and that it will respond favorably to diet therapy. Unfortunately I don't know where to begin. You have tried so many things, and some of them helped, and some of them didn't. I don't have the time or the patience to go through that process. I need to learn from your experience. What can I do right now, today, that will help?|
With this sentiment in mind, I'm going to mention a few things you can do that might help, and won't do any harm. The first is by far the most important, and it has nothing to do with foods or diet or meds. Don't let them drive! When these kids try to make adult decisions at age 16 the results are disastrus. You'll see why when you get to chapter 97 or so. Unless they are on the honor roll at school, or have proved themselves in some other way (e.g. community service), don't let them drive. Don't give them a license, and don't give them access to a car. Just don't do it. In the meantime, here are a few suggestions if your child is still in elementary school and bouncing off the walls.
If your child's disorder responds to diet, and it may not, there is a 3-prong fork in the road: he reacts to specific foods and/or additives, he is vitamin/mineral deficient, or he harbors a microbe that causes most of the trouble. The approaches are vastly different depending on these branches. Unfortunately I spent years traveling down the food allergy branch, when there was really a microbe at work. The unwelcome pathogen ate almost everything my son ate, and dumped its toxins into his blood stream, where they derailed the orderly operation of his brain. Some of these toxins were eventually confirmed by blood tests, and I treasure these lab reports to this day, to reaffirm the fact that I'm not crazy. I'm not just waving magnets around. If you've read all the usual books you may be thinking yeast, but I think it's more complicated than that - a mix of bacteria and yeast living in a biofilm. Battling a microbe is far more difficult than testing for a few food allergies, which is why we spent years searching diligently for answers.
Some of these suggestions represent compromises for a child who lives in the United States, where junk food and fast food is ubiquitous. We can't afford to be draconian in our efforts, or the child will simply sneak at school, and then we're getting nowhere. I'm not thrilled about my son drinking soda, diet or otherwise, for example, but when the whole class goes to McDonalds as part of a field trip, what is he suppose to do? An adult may benefit from a more restricted protocol, but we rarely have that option when trying to help our children, who must deal with the public school system and other social situations, e.g. eating dinner at a friend's house. So we do the best we can.
After you've tested it, and you know it's ok, a glass of milk once in a while is probably a good idea, for its calcium and vitamin D. It also gives your child something he can drink at lunch while others are drinking their corn syrup. He doesn't feel so out of place in the school cafeteria. But bear in mind, there are some kids who react to milk.
Unless you are very unusual, unsweetened tea is ok. And club soda with a bit of fresh lemon or lime is a good substitute for soda pop. I still order this at restaurants today. Other than these items, drink water, period.
Soda pop and juices are particularly damaging. Drinking sugar concentrate, even from real fruit, is like pouring jet fuel into your car. We're not built to handle it.
My daughter reacts to MSG, red#40, lavender, and cats, while my son tolerates all artificials without trouble, And they are full siblings. It's very individual.
How about the synthetic sweeteners? Sucralose is new; I don't know much about it. Saccharin is pretty safe, but hard to find, thanks to Reagan and Rumsfeld. Nutrasweet is ok for some people, but not ok for others, so avoid it at the start. And if it seems ok, limit one serving per day. I know three people personally who were all right with it on occasion, but got hooked, and started drinking/eating diet nutrasweet things all day long, and reacted badly to it in different ways. My sister was up to 7 diet sodas per day, until it started to affect her vision. It's a fake chemical; don't push it!
There are plenty of good whole grain cereals, and even whole wheat noodles for spaghetti. Buy whole grain bread that has fiber and not a lot of added sugar. Serve brown rice instead of white. This also helps with vitamin deficiency.
If you read the rest of this blog, you'll notice I spend at least a year doing, and championing, exactly the opposite. I was following the failsafe diet, which promotes white flours and potatoes and white rice, and all the sugar you want - and I was convinced it was helping! I have two advanced degrees; how could I have been so stupid? The answer to this question, if there is one, is rooted in human psychology. When we are desperate, we try many things, and if one of these tests is followed by a good day, or a good week, we glom onto it like a religion. Of course good weeks happen, and bad weeks happen, for reasons that we don't understand, so we are deceived by false patterns and coincidences, and statistically insignificant data sets. When I talk about the virtues of the failsafe diet, with its white flours and white sugar, and scarcely a fruit or vegetable in sight, realize that it was just an experiment, and nothing more. It's glorious successes were not reproducible, and I have since moved on.
"Science is a long history of how not to fool ourselves." - Richard Feynman
This also helps if you are vitamin/mineral deficient, because a wide variety of raw fruits and vegetables will give you the vitamins you need. I know - some people say you can't possibly get your vitamins from food, and this may be true in some cases, but it runs counter to evolution. Besides, they're trying to sell you supplements, so their motives are suspect. Also, a vitamin supplement will probably feed the yeast more than it feeds you. It could make you worse, and it's yet one more variable you have to track.
And now for our story. Let's start at the beginning, when we adopted two special needs children.
Although we were told the boy (I will call him John) had ADHD, we really didn't know what that entailed. And nobody told us the girl (I will call her Mary) had ADD, because nobody knew. She seemed like a model child with no behavioral issues whatsoever. Yet by October we realized both kids shared a serious neurological disorder that evoked different symptoms in the two siblings. And by late December we were convinced both children would eventually improve with diet therapy. We didn't know that "eventually" was measured in years, perhaps decades, not just a few months.
When John first entered our home I watched him carefully as he interacted with the family dog, since this is a prime indicator. He bonded with the dog immediately and treated her with kindness and empathy. His love for his birth sister Mary was also evident, and his somewhat desperate love for us grew with each passing day. He did not exhibit any form of attachment disorder. Still, he was unmanageable - out of control. He broke three items per day, some trivial and some valuable. There was no malice or vandalism, we were simply living with Curious George incarnate. At the same time he often inflicted minor injuries on his sisters through reckless play. He was in constant motion, babbling loudly and incessantly from morning til night. Most of the time his speech exhibited the impediments of a child half his age: W replaced R and L, and the pitch was high and squeaky. I call this "Elmo-speak". Although he was always getting into trouble, often defiant, and sometimes violently oppositional, there were times when the sunshine of his kindness and intellect broke through the storm clouds of hyperactivity, rare glimpses of hope in an otherwise dark and tumultuous world.
Despite a series of parenting classes in two different states, our attempts at behavior modification were failing miserably. I finally realized he could not control his actions. Our battery of admonitions and time-out punishments accomplished nothing; they only served to pummel his already weakened self esteem. If we stayed this course for 6 more months, his gentle soul would be crushed between the studded wheels of his neurological juggernaut and the inflexible pavement of our rules and punishments.
One night, after an entire day of misbehavior and physical containment, this remarkably perceptive 6-year-old said, in a defeated voice, "Daddy, I'm trying so hard. But I'm very tired. I just want to go to sleep." Although he could not fully articulate, I was able to read between the lines. "I'm tired of always getting into trouble, tired of being the bad boy at school and at home, tired of hurting my sisters, tired of exploding into anger every time you ask me to do something, and tired of fighting you with my words and my fists, because I really do love you." As he began his pre-sleep rocking in his bed I started to cry. I too was tired. Tired of monitoring his every move from morning til night, tired of putting him in extended time-outs, tired of declaring rooms and activities off limits, tired of physically managing his tantrums, and tired of the steady stream of sincere apologies from his small, broken spirit. "Sorry I hit you Daddy. Sorry for all the things I did wrong today." His contrition was always genuine, because his actions were not his own. I borrowed a couple of tissues, told him I loved him, and left the room.
As the weeks rolled by I noted wild fluctuations in his response to the drug. One day the dose was inadequate, allowing subterranean hyperactivity to burst forth like upwelling magma. The next day the same dose was excessive, squashing him into the fetal position under a blanket. On two occasions the drug produced symptoms of autism. He twirled around on the floor, banging his head and moaning. He was incapable of saying any words or responding to questions. He was terrified as he tried to hide from something he could not comprehend or evade. When I questioned him later he remembered every detail - the episode was not a ritalin induced seizure (though these do exist).
Each morning we tried to calibrate his ritalin based on his activity level. As described above, too high or too low would lead to disaster. Keep in mind, we were administering the drug by cutting 10mg tablets into pieces, an inexact science at best. We certainly couldn't roll the dice in the morning and send him off to school, hoping the dose was correct for that day. Although it bought our family some short term sanity, ritalin was not a viable treatment for the long haul. We had to think of something else.
The fundamental question is, why the day-to-day fluctuations? What causes his ADHD to ebb and flow? Logically, we should focus on the things in his life that most directly affect the brain; at least that's a reasonable place to start. Each day his brain is awash in the nutrients and byproducts of his most recent meals, so I decided to examine his diet. I dredged up a 20 year old memory, something about hyperactivity and artificial colors. As a teenager I didn't think much about this scrap of knowledge, but now it seemed relevant. Throughout the weekend I let John eat the most artificial meals I could think of, culminating in a dinner of toaster blueberry waffles and cheap pseudo-maple syrup, more corn than maple. We would start the restricted diet Monday morning.
As if in confirmation, Monday was one of the worst days he has had in our home thus far. His idea of a hug resembled a flying tackle, babbling all the while. He raced up to the dog, stopping inches from her face as she backed away in alarm. Any other dog would have snapped - we are lucky to have such a gentle animal. Clearly he was a danger to himself and others. The ritalin tablets we administered were about as effective as pissing into a forest fire. Contrast this with his behavior on Wednesday, just two days into a more wholesome diet. We cut his ritalin dose in half, 5mg in the morning and afternoon, and the reduced medication still kept him on an even keel.
As I searched the web I quickly discovered The Feingold Association, a non-profit organization that performs research on behalf of its members. My check went out with the next day's mail, and a couple weeks later I received the introductory materials. Glancing through the buyer's guide, I soon realized why this organization is essential. We were making so many mistakes! To site one example, we gave our kids milk frequently: in the glass, on cereal, and in cooking. We gave them 2% because it's "healthier", and it doesn't list any additives. It does say "fortified with vitamin A", but we didn't give that a second thought. The buyer's guide told us that vitamin A is preserved with BHA, something the dairy industry is not required to report. We now serve whole milk, cut with water to reproduce 2%. But how could we, the consumers, obtain this information? We couldn't, if it weren't for the Feingold Association. If you are trying to implement a restricted diet on your own, by reading labels, you are paddling upstream. Join the Feingold Association today.
NFF: Note From the Future, out of chronological order.
As a broad statistical statement, the natural protein in milk, or the lactose sugar, causes many more allergies and sensitivities than the trace amount of BHA that is present in 2%. In fact you are more likely to react to natural foods, such as wheat and corn and peanuts, than manmade additives. However, there are exceptions to every rule. I know someone personally who has a life-threatening reaction to red#40. None of the other additives - just red#40. Therefore we, the consumer, ought to have all the information, right there on the label; we shouldn't have to rely on various non-profit agencies to find out what is in our food.
NFF: Mary also had severe asthma, although her attacks were infrequent and unpredictable. On three occasions we had to rush her to the emergency room. We soon saw a pattern: she reacted to artificial fragrances. Indeed almost all attacks occurred after exposure to a strong perfume. So we kept her away from artificial scents, but then exercise in cold weather brought it on, so we kept her indoors on cold days. Then smaller attacks came for no reason at all. When we put Mary on a more wholesome diet her asthma attacks backed off somewhat, but withholding additives wasn't enough to quell her asthma completely, as it did John's. We had to do more detective work.
NFF: We now know that Mary reacts to red#40 and MSG. These cause a migraine the next day - no fail. All the other additives are ok, even yellow#5 and blue#1. She also reacts to pollen and other seasonal allergens, not by sneezing and sniffling, but with a migraine. Who would think to treat persistent headaches with Allegra? Human physiology is strange indeed.
The Feingold drug guide lists only two clean anti-ADHD medications: a 20mg ritalin tablet, which is too strong for this young, small boy, and a stimulant that can cause liver damage. We were definitely between a rock and a hard place. If we wanted to be 100% additive free, we had to curtail all medication, whence John certainly could not attend school. Fortunately winter break was just around the corner, a time to experiment. I decided to suspend all medication. We can never go back to ritalin - that much is clear - and I wasn't willing to subject John to any more medication. John was placed on numerous drugs, ritalin included, at his group home, by a trained psychiatrist, and according to the reports, he reacted badly to all of them.
Halfway through winter break, John showed definite signs of improvement. He wasn't ready for school, but he grew calmer with each passing day. Until Friday morning that is, when Mr. Impulsive snuck into the refrigerator and ate an unauthorized toaster breakfast treat (raw), which contained two yellow dyes and two preservatives. This set the clock back to zero, with school just three days away. I was furious, frustrated, and overwhelmed. He certainly wouldn't be ready for school by Monday morning, and we had no way to treat his symptoms.
If you read the Feingold materials, or other books on the subject, you are often advised to create a 100% safe home. There should be nothing in the kitchen that contains dyes or preservatives, or whatever you are trying to avoid - nothing for your child to get into that would cause trouble. Once again that is the theory, but I live in the real world. My wife also suffers from a chronic health condition, irritable bowel syndrome, which can be completely managed by diet. It took me three years to figure out how to do it, but that's another story. She must eat certain foods on a regular basis, and they aren't all Feingold compliant. In addition, we have a border who is not excited about jumping on the bandwagon. Unless we evict her, her food will always be in the kitchen, and illicit snacking remains a constant threat.
As school resumed, John was entirely unmanageable, and his teachers and principal wanted him back on ritalin right away. I refused. Ritalin wasn't working in any case. "We are going to manage his symptoms with diet." I declared flatly. "If he's too much for you to handle, we'll keep him home until he is stabilized." They didn't want one of their students sitting at home, but they certainly didn't want John in the classroom either. They could not comprehend our reluctance to medicate our son into submission; apparently they never met parents like us before. Finally they agreed to our little experiment for three weeks, whence we would reconvene and evaluate the situation. Based on our progress during the first half of winter break I told them they would probably see significant improvements before our next meeting. In other words, I stuck my neck out - perhaps a bit too far.
After the meeting, John was calming down again, and I was sure we were on the right track. I was already rehearsing my "told you so" speech, but an hour after dinner, "All hell done broke loose now!" This was a Feingold-safe meal - yet it induced a violent reaction in my son. apparently other variables were in play.
Since the elimination experiments we ran in January were tainted with ritalin, there results were suspect, a waste of precious time. The yellow dyes exacerbated his symptoms, while the medication suppressed them. any patterns in his behavior were lost in the noise. Since he was now off ritalin, we were ready to run the experiment again.
With the sands of John's childhood slipping through the hour glass of time, I was determined to obtain positive results quickly. In January we eliminated one food at a time, because that's the easiest way to proceed, but it doesn't guarantee success. If your child reacts to both wheat and corn, withholding one of these two grains, usually by giving him more of the other, accomplishes nothing. With April at hand, we decided to eliminate all potential allergens at once, without really knowing what they were in advance. The rough criterion is: eliminate any food that your child eats more than once a week. We started serving scallops, artichokes, mangos, and other exotic items that are entirely foreign to a 6-year-old American. Fortunately John likes everything, so the novel foods were well received.
In five days John was functioning at school, learning his letters and numbers. He still required constant one-on-one attention from his special ed teacher, but we stopped getting those mid morning calls asking us to come pick up our unmanageable son. We were making progress.
Slowly, very slowly, we reintroduced certain foods, watching for adverse reactions. These challenges were usually administered on Friday afternoons, giving John the weekend to recover before school on Monday morning. Thus we could only test one item per week, a very long and tedious process. Unfortunately the first test was a grand failure. We gave him two bowls of pure oatmeal, a Feingold approved brand of course, and he was extremely hyperactive for the next four days. This was quite odd, since he had a bowl 36 hours earlier with no reaction. I couldn't explain this discrepancy, so I assumed he had a cumulative reaction to oats or gluten. John would remain gluten free for the next several months. We rushed to the healthfood store to purchase rice bread, rice cereal, and rice noodles.
A week later we tried tomato, which produced another reaction, though not as severe. I saw spaghetti, chili, shrimp creole, and sloppy joes fading into the sunset. Subsequent tests revealed sensitivities to corn and all corn products such as corn syrup, eggs, the gas grill (i.e. combustion products), and grasses (don't take him on a hay ride or ask him to mow the lawn). No wonder single elimination trials did not elucidate John's plethora of sensitivities.
NFF: Most of these conclusions, phantoms of a statistically insignificant data set, would evaporate under closer scrutiny. Humans are very good at creating patterns out of random noise. Even the multiple elimination diet described above could not squelch John's hyperactivity for long, we just got lucky during the first three weeks of its implementation.
Ironically, his food sensitivities don't exist at all, and they never did. He does not react to this food or that food per se. It's more complicated than that. He reacted to oatmeal in a big way because oats are high in carbs and oligosaccharides. These sugars feed a colony of pathogenic bacteria that live in his colon. The colony thrives, and their metabolic byproducts enter his blood stream, cross the blood brain barrier, and derail his neurotransmitters. Unfortunately it will take us another three years to figure this out.
With wheat and corn off limits, we had given John some form of rice every day - practically every meal. If you've read the literature on food sensitivities, you know this practice is discouraged. Patients should wait four days before eating the same food, and even skip a day before eating from the same food group. Perhaps John had developed a sensitivity to rice, where there was none before, and because we assumed rice was safe, we were implicating several other food items. This is like the game of Clue. Make one mistake and you have jumped the tracks; the rest of your deductions are entirely bogus. This represents an incredible waste of time and energy, ours and his.
We put John on a rotation diet. If he eats chicken on Monday, he doesn't get it again until Thursday or Friday. With rice off limits I decided to return to corn and wheat. To my surprise he had no trouble with either grain, in moderation and rotated. We cycled through: corn, no-grains, wheat, no-grains, repeat. We also exonerated several foods that were actually innocent, they just happened to be served with rice. We were back on track and getting good data again. Furthermore, we were unlikely to create any new sensitivities, thus guaranteeing a suite of safe meals.
NFF: In reality, we did not induce a rice sensitivity, although that was a reasonable hypothesis. Rice is the safest food on the planet. The most sensitive people on Earth eat rice with almost every meal, for life, and have no trouble. John was reacting to the fluffy white rice, with tons of carbs and no fiber. Brown rice is better, in moderation, and as part of a controlled diet. It's all about carbs, carbs, and carbs.
We don't follow a strict rotation diet any more, though I do make a modest effort to rotate starches and meats. If he has lots of rice one day, he may have potato the next. Diets can be so restricted, so difficult to implement; you should probably set rotation aside at the start, unless you find you are making no progress at all.
There is an important exception. If you know you are, or were, sensitive to a particular food in the past, you should eat it in moderation, and rotated. I had a terrible response to corn ten years ago, a racing heart and high blood pressure, so I only eat corn every four days or so. Sometimes I eat a lot of corn, and that's ok, as long as I take a break from corn thereafter.
The next several chapters involve various theories surrounding carbohydrates. It seemed like he always had trouble with high starch meals, so we began to count carbs, simple and complex. Perhaps he could not regulate his blood sugar properly, or perhaps he had a serious microbial infection. Read on as we pursue these theories.
In addition to yeast, a high carbohydrate diet allows naturally occurring yeast to multiply in the patient's intestines. Simple sugars, including fruit, can elicit the same symptoms as yeast. If John's ADHD was yeast connected, all prior elimination experiments and their resulting data were destined for the trash can.
If I hadn't already read several books on yeast-related illnesses, I never would have thought of this connection on my own, and the Feingold association has little to say on the subject. In fact, they declare "sugar is not an issue", and for many people it isn't. However, no one book has all the answers, and no single organization provides the magic bullet.
We put John on a yeast free diet and cut back on carbohydrates. We went back to the healthfood store to purchase several yeast free wheat products, including breads and pastas. John did not react to any of these, though we must serve them in moderation due to their high carbohydrate content. Apparently John does not react to wheat; it was the yeast embedded in most wheat products. We even brought rice back, although it has an extremely high carbohydrate count, so we have to be careful.
After a couple weeks on the yeast free diet a class of symptoms virtually disappeared. To summarize, we took the H out of his ADHD. John no longer raced around the house - he didn't even fidget. Nor did he wake up early, unable to get back to sleep. But what about his remaining ADD? He still couldn't focus on an academic task, and was easily frustrated at the slightest disappointment. He was certainly not ready for a full day of school, and first grade was just two months away.
Throughout July we tested a number of simple sugars: cane, beet, honey, maple, corn syrup, banana, apple, etc. Some children are sensitive to yeast and/or specific sugars, but do not actually have a candida infection. These lucky individuals can use a different form of sugar to sate their sweet tooth. Not so with John. The slightest dose of refined sugar, from any botanical source, sent him into overdrive, and even natural sugar was a problem. We must restrict him to one piece of fruit per day, and the fruit must be free of yeast/mold, which rules out grapes, raspberries, and cantaloupe. Also, fruits must be rotated, and served with or shortly after a meal.
We resigned ourselves to a life of planning, shopping, cooking, cleaning up, and analyzing. Every meal must be made from scratch, three times a day, plus an afternoon snack and dessert.
In late July we sent John to a summer day camp at a local school, and he did just fine, with no psychotropics in his blood stream. Granted, they didn't ask him to perform any challenging academic tasks, but the kids did watch movies and engage in arts and crafts, activities that were beyond his capabilities a few weeks earlier.
NFF: We now know that John suffers from a chronic microbial infection that drives most of his symptoms. He's always had it, and perhaps he always will. But I now think the organism is a bacterial colony, rather than a strain of candida. Evidence for this theory will be presented later on. This microbial colony waxes and wanes, depending on the quantity and mix of carbohydrates in his diet, and other factors. The formula is very complicated.
When you are counting carbohydrates, don't draw significant distinctions between real and artificial sugars. It's interesting that we have such a strong bias in favor of fruit, honey, maple, and other natural sources of sugar. Why should these be particularly safer than the sugar that comes from cane, and sits, granulated, in your sugar bowl? No reason really, but this is what we believe, and marketers have picked up on it. When I was young we ate Kelloggs Sugar Smacks. The same cereal is now called Honey Smacks, with just a trace of honey to justify the name change. Everywhere you look, honey and/or maple syrup is added to products and pasted into the name, to make you think it is more natural. But maple and sugar are both concentrated sucrose, and it doesn't really matter which you eat.
Fruit juice is another allegedly healthy form of sugar, but not for everyone. Whole fruit is usually ok, but juice is far too concentrated. You can easily drink the equivalent of 3 or 4 apples in one go, without the fiber and food bulk that promotes healthy digestion and regulates the flow of sugar into your blood stream. Yet we give our babies concentrated fruit juice within the first year of life. Following the trend set by honey and maple syrup, the food industry adds fruit juice to its products and declares them healthy. Yes, fresh cider from the mill is an annual autumnal treat, but not a healthy staple. Fruit juice can be almost as harmful as the equivalent amount of soda. Throw away the juicer; it's a bad idea.
The bathroom is another troublesome location, and over a period of several months I found that John's baths consistently aggravated his symptoms. Once again we consulted with the Feingold Association, which provides lists of safe hygiene products and cosmetics. We purchased hypo-allergenic soap and shampoo, but still the bath remained a problem. Finally I decided that environmental mold might be a factor. I removed the rugs, which act as ideal repositories for molds, dust mites, and volatile chemicals. I also kept the bathroom well ventilated and cut back on his play time - get washed and get out. These steps helped a great deal.
Many food-sensitive patients, and almost all candida patients, are sensitive to mold. John is no exception. Although the changes we made to his environment didn't produce an immediate or dramatic improvement, I believe they will prove their worth in the long run.
One night my Aunt took Mary out for dinner as a special treat and inadvertently performed an experiment for us. Mary ate grilled cheese and ice cream, a meal that contains yellow dyes in the cheese, preservatives and glutamates in the bread, artificial everything in the margarine, preservatives and gums in the ice cream, lactoes, caseinne, and sugar everywhere. The next morning Mary could not write the numbers 1 to 20. She reflected some of the digits like a dyslexic, and writing a two-digit number was out of the question. We spent five minutes working on the number 16. She wrote 61, or reflected the 6, but couldn't write 16 - as though her hand had a mind of its own. We sent her off to school, though I'm not sure why. The next morning we asked her to perform the same task, and she whipped off all 20 numbers in a nice clean row and wondered why we were asking her to do such a silly thing.
With this compelling evidence in hand, We decided to skip the various drug regimens, which didn't work for John, and placed her on the Feingold diet as well. At first she resisted, but she really wanted to do well in school, and she saw some improvement in John's behavior, so she told us she was willing to give it a go. As parents we could have forced it on her, but I really wanted her voluntary cooperation. Classmates and friends are going to offer her treats and snacks for the rest of her life; this young girl has to muster the courage to "Just say no." This is much harder than resisting illicit drugs. Consider the following: The cupcakes that your friend brought to school for her birthday don't hurt anybody else. They are perfectly legal, and delicious. Everybody's eating them, but not you. Even though you have your own special snack, you're sticking out like a sore thumb in a world where conformance is the gold standard. To add insult to injury, one of your classmates taunts you in a loud voice. "You can't eat this cupcake, because it's not on your diet. I can eat it - it's delicious. Too bad you can't have it."
Mary came home crying that day, and no doubt this scene will be repeated again and again. But she said NO, and brought the cupcake home for me to examine. I praised her for her courage, and gave her the best treat I could put together, consistent with her diet.
Although I like to think our positive reinforcements play a role, Mary is probably holding fast to her diet because she sees the difference in school. She has already Aced three tests in subjects that she was struggling with before. When she got 100% on a geography quiz, her teacher praised her in front of the class, and she came home positively beaming. She would do almost anything to retain this position of excellence.
After this visit, we took John to a holistic practitioner to get a second opinion. I contacted the International Health Foundation, which maintains a list of some 800 doctors, which sounds like a lot until you divide it by 50. That leaves an average of 16 doctors per state. In our case most were on the other side of the state, and others did not treat children. Unless we wanted to accrue frequent flyer miles, there were only two doctors to choose from. Take a wild guess - do you think they are part of my health plan?
We took John to one doctor and Mary to the other, and in both cases I was less than impressed. Then again, my expectations were probably unrealistic. My subconscious mind anticipated a set of definitive answers after a one hour visit: hidden food allergies unveiled, additives to avoid, and supplements to administer. Both doctors gave me an assortment of the latter, but they probably give the same pills to all their patients, generic vitamin/mineral supplements available at any healthfood store. So we really didn't get much out of these visits. "You're doing all the right things," he assured us, "just keep going." Apparently we had to keep chugging along, as we have done for the past year. Nobody is going to step in and provide a quick fix.
So what is teflon anyways? Teflon is a polymer whose base monomer is a rather nasty looking fluoro-carbon, just a couple steps away from freon. It's a wonder we don't all react to it.
Keep in mind, there are some ADHD children who react to aluminum ions, and they are better off using new teflon pans. If you want quick answers from this blog, you won't find them, because every child is unique. However, I can tell you to take your cookware into account, because it could be a contributing factor.
We now use enamel pans and glass baking dishes whenever possible. These are the safest vessels, introducing the fewest impurities into your food. At first we bought heavy expensive enamel cookware from Hudsons, for $100 a pan, only to find that the surfaces began to chip in just a couple months. We promptly returned these pans and ordered new light-weight durable pans for about $10 each. See the Miles Kimball catalog, 920-231-4886, item #465104. These have lasted for years.
NFF: John never had a problem with cookware. Once again we were pulling false, short-lived patterns out of random noise.
Since half the atoms in teflon are fluorine, we also looked at fluoride in general. We had been giving John bottled drinking water since he first arrived, but in August we began cooking with it as well, and we carried bottled water whenever we left the house. I also replaced his fluoride toothpaste with a homemade baking soda solution. Shortly after these changes I noticed a modest improvement, though we don't know whether fluoride is the culprit, or some other tap water impurity such as chlorine.
We have since exonerated fluoride and reissued his original toothpaste, and we're not afraid of tap water any more, though bottled water may taste better, depending on where you live.
For months I assumed he was just tired, at the end of a long day, which magnified his symptoms, but as he entered the first grade I began to think about it logically. He often got into trouble in bathrooms, even during the day. He deliberately stuffed wads of toilet paper into the toilets at home and at school. He spilled water, dabbled in hygiene products, washed the walls, got into cupboards, and so much more. As I told his teacher, "If he's singing in the bathroom, you're all right. But if he's quiet, something bad is happening." He isn't just tired; there is something about bathrooms. And no, it's not psychological. Don't go there.
I suspected an environmental agent such as mold or perfume or cleaners. But as the title of this chapter suggests, I was mistaken. It took nearly a year to figure it out, but it's obvious in retrospect. Mirrors magnify his hyperactivity. As he watches his reflection, a positive feedback loop ensues, and within seconds he loses all control. We covered the bathroom mirror with blank newsprint, and bedtime became much easier.
Now that I know what to look for, I'm amazed I didn't see it before. He is drawn to mirrors like a magnet. They don't usually drive him crazy, but he's always looking. If there isn't a mirror nearby, he'll look into a window, or even my wife's glasses - anything to catch his reflection. If there is any hyperactivity present, the visual feedback will magnify it ten fold. I asked his teacher to move him to a different desk at school, so he cannot see himself in the small mirror over the classroom sink. She thinks we're nuts, but hey, what else is new?
If you have an ADHD child, I recommend covering or removing any mirrors in the child's bathroom and bedroom. You might consider doing the same for the common rooms of your house. Don't forget to pull the shades at night, so he doesn't see himself in the windows. These steps might not help, but like a healthier diet, they won't do any harm.
I'm not sure if this qualifies as a particularly valuable insight, but it's interesting, and it explains why a 20th century classroom is the worst possible place for these children. John can't sit quietly and color a picture while 23 other kids color their pictures independently. Being ignored is, for him, a kind of pain that we cannot comprehend. There is no time to think about rules or consequences; the pain must end. Time to drum on the desk, or make a loud noise, or shout out something provocative, or run around the room, or flash the lights. Whatever it takes. There, that's better, now he's got everyone's attention. Some of the kids are even laughing at his antics, and that's the best. Uh-oh, here comes the teacher, and she's angry. He's in trouble again. Why does this always happen? There seems no way to avoid it.
Our neurological disorders are as interesting and as complex as the organ they afflict.
Q: How many ADHD kids does it take to change a light bulb?
A: Hey, let's go ride bikes!
We attended two parent-teacher conferences in the first week of March and came to the same conclusion about each child: "He/she hasn't behaved this badly in months." Because John is in special ed, we had a history of documentation to consult. "Precisely one year ago."I concluded. In March of 1999 we were taking him off meds and changing his diet, so there were too many variables involved. All we could do as parents and teachers was endure, with no explanation in sight. Fortunately he improved over the summer, and then in the fall he started doing a little better in school. Now it is March once again, and something is amiss. Mary has also jumped the tracks, and she is on a different diet. Is there something in the air?
Throughout March I documented a negative correlation between scholastic performance and nasal congestion in both children. In fact,if John wakes up with a stuffy nose, I don't send him to school at all. He'd just be in time-out all day, and what's the point of that? We know that spring pollen can induce sneezing and watery eyes; might it also exacerbate neurological conditions such as AD[H]D? I decided the answer was yes, though I was hard-pressed to imagine why.
NFF: Spring pollen was probably not a significant factor. Certain foods caused his nasal congestion and his bad behavior simultaneously. The two symptoms were correlated by an underlying food chemical, hence his congestion served, and still serves today, as a harbinger of rising hyperactivity, although the former does not cause the latter, just as your alarm clock does not cause the sun to rise.
I will spare you the details of the additional steps we took, e.g. air purifiers etc, to protect John from the spring pollen, which was suppose to be causing so much trouble. These measures accomplished nothing, and I abandoned the underlying premise after a while. Fortunately I didn't spend more than a couple hundred dollars on this venture, but more time was lost.
Of course some children do react to their environment, quite apart from foods, so I really shouldn't chastise myself. Mary in particular; 70% of her headaches are caused by allergies. So it was a reasonable hypothesis, it just didn't bring John down from the moon.
NFF: The failsafe diet is very high in carbohydrates, as it promotes rice, pasta, white potato, pears, and all the sugar you want. John could not handle all these carbohydrates. His micro-colony thrived, and dumped their toxins into his blood stream. This completely swamped the benefits, if any, of fewer amines and salicylates.
Much to his dismay, I put him back on a strict candida diet, as described in The Yeast Syndrome. His recovery was instantaneous and miraculous. The next day he was just fine, as though nothing had gone wrong. His teachers couldn't believe the difference, and neither could I. In the future we will have to be more careful about carbohydrates, especially simple sugars.
NFF: For two years John's microbial colony waxed and waned with no discernible pattern. No doubt the microbes were responding to the overall carbohydrate levels in his diet, and a dozen other variables that we were not tracking at the time.
A year ago this month I decided John had candida; now I claim he does not, and never did. I was always uneasy about this diagnosis, even though the candida diet helped. He never had any of the other candida symptoms. His immune system is strong, and he is healthy as a horse. He throws off colds and infections that send the rest of us running for antibiotics. It just didn't make sense. Were we on the wrong track?
John reacts to carbohydrates, both simple and complex. As I chugged down the candida track, with its low carb diet, I looked to my left and saw another track running parallel to ours. It is called fructose intolerance, wherein the patient, often for genetic reasons, cannot metabolize fructose (fruit sugar). No wonder he reacted so badly to fruit and fruit juices. And table sugar is half fructose, so that would explain a lot. I read everything I could on the subject, and reduced his fructose intake. If this was John's problem, it was very serious. The partial fructose metabolites can inflict permanent liver damage. We needed to confirm or deny this hypothesis quickly.
At the same time, the track to my right also beckoned. Perhaps John simply produced too much insulin in response to sugars. This would drive blood sugar below normal, forcing a state of hypoglycemia. This is known to produce hyperactivity in children. I tried to serve protein and carbohydrates together, in the correct ratio, as described in the book Enter The Zone. Yet the zone diet recommends fructose over glucose, since fructose enters the blood stream slowly and produces less of an insulin response. I couldn't accommodate all these theories simultaneously. Yet I had to do something; John was getting worse each week.
In fact his decline was frightening. Putting him on the strict candida diet bought us another two weeks of good behavior, but then that was not working. In an effort to keep blood sugar levels constant I started serving smaller meals more often, with fewer carbohydrates, and low fructose, and just the right balance of protein, and no synthetic additives, and no dairy. Try doing that eight times per day, cooking everything from scratch. It's exhausting. That bought us another week of good behavior, but then it wasn't enough either. Soon we were seeing reactions to small ten-carb meals, with protein, and without much fructose. Something was terribly wrong.
Soon another symptom appeared, adrenaline. Once or twice a day John had a racing heart after a mini-meal. He reported this to me, and I could feel it pounding through his chest. This was correlated with his bad behavior. In fact he was sometimes scared to death, curled up under a blanket, or consumed with rage, hitting and kicking everything and everyone in sight. This fight / flight response, and the racing heart, pointed to adrenaline. When the body is desperate for blood sugar it secretes adrenaline. This is only suppose to happen when the lion is chasing you. "We need blood sugar now, and lots of it, to run away or fight!" Nobody should have to endure a full-scale adrenal response two or three times a day. And of course John didn't know what to do with these feelings. I tried to tell him what was happening inside his body, and that there were no lions in the house, but his emotions trumped my logic.
The adrenaline finally sent us down another track. It wasn't candida, or fructose intolerance - it was an imbalance in his blood sugar regulation, and it was growing worse each week. Perhaps his pancreas was failing, or his liver. I scheduled an appointment with his pediatrician as soon as possible. As you recall, she was somewhat skeptical of the diet connection, but she was still an expert in other areas such as juvenile diabetes, and I needed her help. As it turns out she has a very open mind and will consider just about anything. As we talked on the phone she mentioned a couple possibilities. Like us, she thought fructose intolerance was unlikely. Either the liver was not functioning properly or the pancreas. A glucose tolerance test would confirm this. She also wanted to run a thyroid test, just to make sure. "If the thyroid isn't functioning properly, the patient can't metabolize sugars. We might be able to correct that with one little pill." Over the next couple days those tantalizing words rang in my head. Just imagine, one little pill, and John is all better.
The next night, as I was unable to sleep, I had another thought. Iodine. It's essential for proper thyroid function, and John has ingested almost none during the past year. We even served pure salt, because the iodized version contains corn starch, an additive that we weren't sure about. Besides, iodine was a variable that we'd never tracked before, so it was worth considering.
I started him on iodine supplements, and the next two days were much better. But by the third day the racing heart and the associated insanity returned with a vengeance, like something out of Edgar Allen Poe. Another blind alley, another week of precious time lost.
The Failsafe diet completely eliminated his adrenaline reactions. Or was it the reduction in carbohydrates? Hard to tell. John use to experience a racing heart with frightening behaviors three times a day, but these attacks disappeared under Failsafe, and have not returned since. He still suffers from ADHD, but at least the racing heart is gone.
In fact the first few days went so well, I let down my guard and gave him a boatload of carbs. Mary's birthday, with ice cream all around, induced a violent reaction, so I decided dairy was a problem. I eliminated this, and John improved, until several servings of wheat, whence I concluded gluten was also a problem. many Failsafe participants are either gluten free or dairy free or both, so I hadn't really jumped the tracks yet. But then he had several more bad days filled with lots of potatoes, so I thought potatoes were a problem. I removed these from his diet, and he was excellent, until he ate a heaping bowl of rice. Does he react to rice too? No - it must be the carbs.
I put him on 120 carbs per day, including rice and wheat and potatoes in moderation and in rotation, and he improved steadily over the next couple weeks. Before Failsafe, even 60 carbs per day was enough to induce antisocial behavior; now he could tolerate at least twice that level.
NFF: We were slowly beating back his microbial colony, while keeping him on a clean diet. Failsafe had nothing to do with it. However, I still don't understand his adrenalin reactions, what caused them, or why they went away. I'm writing this years later, with the benefit of hindsight, and I really don't have a clue.
Perhaps time was our enemy. The nearest Tyson plant is 1,000 miles from our home, and they ship their meats chilled, not frozen. It takes a few days to reach our local distributor, than a couple more days to reach our store, then another day or so on the shelf before we buy it, then a couple more days in the fridge before we cook it. Is that too long? Is John reacting to amines that build up in the meat? This was a new variable to consider; we never wrote down how long the meat sat in our fridge, or our local store, or the various distribution centers, or the trucks, or the slaughterhouse. Something else to explore.
Restaurants were another source of frustration. Why did John react to a restaurant meal one night and not another? It was exactly the same meal, prepared the same way, as far as we could tell. Yet it wasn't the same, because we never knew the age of the restaurant's inventory. Now we have a rule - don't take the kids out on a weekend. If he orders steak on Sunday night, it probably came in on Thursday or Friday. And how long did it take to get from point of origin to the restaurant? We'll never know, and the restaurant manager doesn't know either. Oddly enough a McDonalds burger is probably safer than a fine steak, because they move their inventory through faster, and the beef is always frozen in transit.
We began buying all our meat from a local butcher who promised us a maximum of 36 hours between slaughter and sale. This seemed to help both children. In particular, John had no trouble regulating his blood sugar. We served heaping bowls of rice, and other high starch foods, and he was fine. I wish I had a comparable quick-fix for restaurants, but I don't. I suppose we could order vegetarian dishes, but John would be hungry again in an hour, and Mary doesn't eat many vegetables. Maybe McDonalds, without the condiments, is our best bet after all.
Although our children were doing better on average, they still had very bad days, and we didn't know why. One day, after a series of absolutely safe meals, John suddenly became violent and unmanageable. What did we do wrong this time? The stakes were from the new butcher, but we cooked them on the grill; maybe that creates too many amines? I checked with the amine sensitive folks on the Failsafe network; most of them can eat lightly grilled meat, so that probably isn't it. Nothing was wrong, yet John was bouncing off the walls. If these attacks continued without pattern or adumbration we could not send him to school. I hadn't been this depressed in years.
"You know," recalled my wife, "that butcher could barely speak English. I wonder if he really knew what I was asking him, or how important it is." We went to this butcher because he is just a few blocks from home, but I'd certainly be willing to drive across town to keep my children healthy. We made several calls and talked to five more butchers, who all spoke excellent English.
"Our meat sits about ten days at fridge temperatures before we sell it." replied the first butcher on the list.
"I can't really tell you for sure - too many distributors and suppliers in the chain." answered another honestly.
"You can get frozen meat shipped to your door." suggested a third.
We had already played the frozen meat game. A large retail seller of frozen steaks, which shall remain nameless, deliberately leaves its meat at 55 degrees F for 6 days, then freezes it and ships it all over the country. "That's where the flavor comes in." bubbles their sales rep enthusiastically. "That's what makes it tender." Gee, thanks alot.
The more calls I made the more discouraged I became. Nobody within twenty miles could sell us fresh meat.
Somehow my wife always comes through when I am at my lowest, and I generally reciprocate. That's part of a good marriage, and it's the best thing we've got going. "You know," she mused, "I remember a poultry shop in Rochester that sells free range chicken. It might be fresh. I don't see them here in the phone book, but I remember driving by the place." We called information and tracked them down - the Peacock Poultry Farm. I called the shop and spoke to a representative for 20 minutes, probably to the dismay of in-store customers. She was a wealth of information. She documented every step from slaughter to sale, and if we came on the day of delivery, the meat would be less than 24 hours old. And their meats are additive/hormone free. I was practically jumping out of my chair with excitement. On a whim I asked if they also carried turkey. "Oh yes." she replied. "Turkey and duck and beef and lamb and bear and buffalo and gator and ostridge and more." It's a poultry shop, but they have everything we need, and it's additive and amine free. "If I weren't married I'd ask you out." I declared.
Since a delivery arrived that morning, processed the night before, we went straight over and bought a little of everything. We ate it for the next week and saw no reactions. If this store wasn't here, I don't know what we'd do.
He still has incidents, but they are rare. He had one during the second week of school, hitting and kicking his teacher. This took place after eating fish that had been in our freezer for a week. Remember, we don't live near the coast, so the freshest fish we can buy is already churning out amines when it hits our store. An extra week in the freezer is too much, I guess. You have to be so careful with fish.
The improvements at home are just as dramatic, though his frustration level still drops when he becomes tired near the end of the day. We took the newspapers down off the bathroom mirror, as he seems to have no trouble getting himself ready for bed. His sisters are thrilled; it's hard to get ready in the morning without a mirror. Throughout the day the kids do what we ask, and nobody yells any more. Ok, we have to raise our voice to break the zombie spell cast by the TV, but that's not shouting in anger, and the kids know the difference. Not too long ago I feared John would never sit still to watch TV, so that's something new.
NFF: Mary was truly on the mend, and has outgrown most of her food sensitivities. However, John's improvement was only temporary. Within a month he was as bad as ever, perhaps worse. I'm writing this several years later, and he's never been as good as he was that month. What was so great about that month? We still don't know.
NFF: Unfortunately the bad behaviors remained. What we smell on his breath is only part of the story.
I thought about the foods we had eaten over the past couple weeks, but nothing jumped out at me. As far as their diet was concerned, April looked just like March, which looked like February. I started to think about spring pollen, then deliberately pushed the thought from my mind. I reviewed the food journals again. Back in February I tested the kids on wheat, a little pasta every other day, and didn't see any reaction. I continued this through March and into April. Could this be a slow build-up? I'd read about this in books, but found it hard to believe. There was only one way to find out. I stopped serving wheat and saw no change for several days. But eventually Mary's asthma subsided, and was completely gone in ten days. John's behavior also improved over the same period. Perhaps it was a build-down, coming off the wheat. If your child is having a reaction, it may not be the last meal, or even what he ate yesterday. It might be the aggregate of foods that were eaten during the past week. And once you eliminate the troublesome foods, you might not see an improvement for another week or two. Wow! If a food challenge can take a month, then we can only test a few foods per year. Where does that leave us?
We had brought in many new foods over the summer, with no obvious effects. However, we don't ask him to do much here at home. He plays well with his sisters, and with his friends down the street. That's a far cry from sitting quietly in a classroom and working on math, which is "hard", and "boring". Perhaps we need to get back to basics.
We cut back on salicylates and amines, and also eliminated gluten and dairy. John still looked terrible, and I thought sugar was to blame, so I took that out too. Then he seemed to react to rice. Here we go down the carbohydrate path again. Finally I saw a connection to white potatoes. I removed these, and he improved over night.
Looking back through my records, we gave John some form of potato almost every day. And when he went gluten free, potato was in everything we baked, either from a gf mix or from scratch. I thought the baked grains produced amines, and then I blamed eggs, then sugar, then carbohydrates in general - but it could be potato. I can't believe how long it takes to figure this stuff out.
NFF: There's nothing wrong with potatoes, except that it is a high carb, low fiber food that feeds the pathogen.
After several controlled experiments, I decided that his pure, whole grain bread brings on a reaction, while a white refined bread, loaded with preservatives, calms him down. So gluten is not the issue. What does this mean? What does whole grain bread have that white bread does not? What is in wheat germ/bran that is not in wheat starch?
One significant difference is lectins, a set of biologically active proteins that are prevalent in the husks and skins of most plants. I read the lectin story, and put John on a lectin free diet. This helped for a while. Then again, it seems like every change helps for a while, or else we are desperately searching for improvement. Needless to say, it didn't last. Soon his behaviors were as bad as ever, so we gave up on the lectin theory in short order. It was a good try; something we never looked at before.
Here's something else we never tracked: whether he ate his salad first or last, whether he ate that apple on an empty stomach, whether he went to bed immediately after dinner, how much oil/fat was in the potato chips, etc. All these factors are important in the ibs diet. Yet why should the ibs diet help someone with adhd, someone who has no overt digestive disorders? I had no clue, but we had to give this diet a try.
Let me pause for a moment and describe Wendy's IBS, which began 20 years before I started writing this journal. It exploded during her pregnancy, and became so bad that she could not leave the house. Her quality of life wasnear zero. today we know it can be controlled with diet.
I'm going to describe two forms of IBS, A and B, with the understanding that Wendy does not fit completely into either camp. Type A is intrinsic. Your intestines have normal flora, but they react to things, oils mostly, and insoluble fiber, and seeds, and other things. See Eating For IBS for more details.
Type B is a bacterial imbalance. It can happen to anyone. It goes along with the high carb diet that we all eat here inthe the United States. When the bacteria get out of whack, they can cause any symptom in any person. My wife has explosive diarrhea, and my son goes insane. You never know what the mutated bugs are going to do.
So how does my wife fit into all this? I thought I understood Wendy's symptomology in 1995, shortly after her symptoms got so much worse, but I have since refined my theory just a bit. Yes, she has some of type A. Oils are very bad, but only vegetable oils. Dairy is ok. That's not typical, dairy is suppose to be bad for these folks. And insoluable fiber actually helps her, whereas it should cause trouble. So she's partly type A.
After a few years of really poor eating habits, lots of carbs, she developed type B as well. She would react to anything, any meal, didn't matter what. I couldn't see type A at all, because type B was in the way. She finally backed off on the carbs, and had 5 grams of fiber with each meal; and over a few months her bacteria returned to normal. Type B was cured. But she will always have to avoid vegetable oils and other fatty foods.
Ironically, starch is not as bad. Therefore it isn't a blood sugar regulation problem. White refined grains often have a higher glycemic index than fruit. In other words, grains dump sugar into the blood stream faster than an apple, and are more likely to cause an insulin spike. Yet he does better on rice and noodles. This became clear when we put him on the ibs diet, which promotes starch and restricts fruit. How can sugar be bad while starch is good? Especially since a starch molecule is merely a chain of sugar molecules strung together, and the first thing we do, in our intestines, is break that chain up into its sugar components. I don't get it.
Remember I was convinced John had candida, then I was sure he didn't. Well maybe he does after all. Parasitic yeast thrives on sugar, but does not do as well on starch. And remember that horrible breath, like fermented grain? That's a classic symptom of a candida infection.
Then again, all the yeast books tell you to avoid both sugar and starch. After all, starch turns into sugar in short order. One paragraph in the Crook-book says some patients tolerate starch, but other than that footnote, starch and sugar are both forbidden by the various candida diets. Yet John seems to tolerate starch in moderation. I don't get it.
If it's not candida, what is it? Well fungi aren't the only microbes out there. I began to suspect bacteria. Perhaps an unwelcome colony thrives on sugar, but doesn't metabolize starch as well. Remember, it's always a contest. I'm sure all forms of intestinal bacteria can make a living on starch, but if the good bacteria metabolize it more efficiently, they can out-compete the bad, and John's symptoms will abate. And what do the bad bacteria do? They probably dump toxins into the intestinal tract, and into the blood stream. I have no idea what kind of toxins are involved. Amines are a possibility. Some bacteria convert tyrosine into tyramine and histidine into histamine. I found an interesting paper that describes this process. Oddly enough, the researchers found a marked reduction in the presence of amines when starch was added to the mix. They don't speculate on why; they are merely reporting the outcome of their experiment. In their conclusion they state that amine synthesis by internal bacteria can be reduced by making simple changes in the diet, i.e. less protein and more starch.
We put John on a high starch low sugar low amine diet, and again, he is doing very well. We'll see how long this lasts.
Here is another important difference between starch and sugar. Starch is a polymer of glucose while sugar is a dimer of glucose+fructose. Maybe he is fructose intolerant after all. Remember I dismissed this theory a year ago, because it is usually a devastating illness that puts babies in the hospital the minute they drink their first glass of juice. Obviously John doesn't fit this profile. Still, it was hard to argue with the data. There may be new and undiscovered ways to react to fructose.
Here's another thought. Perhaps the fructose wasn't being absorbed through his intestines. He never had a chance to metabolize it, properly or improperly, because it never got into his blood stream. In that case, the fructose would feed the aforementioned microbes. I found an interesting page on candida, the first new idea regarding candida to come along in 25 years. It suggests that starch is often tolerated, and sometimes it helps the patient recover. Conversely, sugars are a problem because of their fructose content. This looks exactly like John, though I still think his unwelcome guests are bacteria, not fungi, for reasons that will be given later.
Mal-absorption and improper metabolism are two different things. Fructose intolerance is a metabolic, genetic disorder that probably would have made him deathly ill at a young age, as fructose intermediates built up in his liver. In contrast, fructose mal-absorption would simply pass sugar on to the colon, and lead to symptoms only when an opportunistic microbial colony took hold. This would depend on the nutrients eaten over the past few weeks, the type of colony, his reaction to their non-human byproducts, and the permeability of his intestinal walls to these molecules. The smell that was in his breath and on his skin was surely a cocktail of alcohols and aldehydes and ketones produced by the incomplete metabolism of sugar in an anaerobic environment. It was horrible, and so was his behavior. Methane and carbon dioxide are also produced, which is why John always had gas for no apparent reason. I use to think this was trivial, a rather petty thing for his teachers to worry about when compared to his serious problems, but now I think this symptom might be important. I check his stools, and sure enough, they are lose and mal-formed precisely when he is insane. On the good days his movements are perfect.
So why isn't fructose being absorbed into his blood stream? I haven't proven it, but I suspect it would be if it were free fructose. Free fructose is available at the healthfood store, but I haven't run this test yet. In all other settings, fructose is bound up with glucose to make sucrose, i.e. common table sugar. What if he lacks the enzyme needed to split this molecule in two? The enzyme is called sucrase, or invertase, and I'm sure he doesn't lack it completely, but he might not make enough of it, or it may be mal-formed, so that it doesn't cleave the molecule efficiently. Thus sucrose cannot be absorbed, at least not in large quantities, and it passes through to the colon where it feeds the bad microbes. This prompted me to do two things. I bought pure dextrose and started baking with that. (Dextrose is another name for glucose.) It doesn't matter whether he is fructose intolerant or invertase deficient, dextrose should be ok. He eats chains and chains of it in the form of starch, and he's fine. I also bought an enzyme supplement that contains invertase. I planned to serve this supplement, along with some pears, to see what happens. Pears are high in sucrose, and extremely low in salicylates and amines. It's a perfect test.
Returning to the world of scatology, most vegetables magnify his ADHD, especially the vegetables on the Failsafe diet, which are primarily cabbage and legumes. But those are the "gassy" vegetables, aren't they? They produce gas because they contain sugars that humans cannot digest. The sugars move on to the colon and are consumed by bacteria. This is slightly embarrassing for you and me, but it is devastating for John. If we give those microbes anything to eat, anything at all, the results are disastrous. (BTW, bacteria can digest these oligosaccharides, while yeast cannot; hence I suspect bacteria.) We needed another enzyme, alpha-galactosidase, capable of splitting these compounds. This enzyme is the main ingredient in the commercial product Beano. Unfortunately it is rarely found in a broad spectrum enzyme supplement. There are lots of other ases, probably some that we don't need, but it seems like this one is always missing. We may have to serve our invertase supplement with a sugar meal, and Beano with a vegetable meal. This is mostly speculation; we'll see where it leads.
We always wanted to test here at home, so he wouldn't get in trouble at school, but those tests are inconclusive. We have to test some items on a school night, despite the consequences, to see if he can function in school.
That's great news, because there are plenty of high-amine foods that are free of MSG, foods that are back on his safe list. He loves salmon, and that helps supply his omega fatty acids, which he may be missing. But the low MSG diet isn't a breeze either. We've been working diligently for almost four years, and we still can't find a safe bread or bun. We believe we have found a safe cereal, and a safe bagel, but we're not sure of that either. Something goes terribly wrong whenever baked goods are brought in.
The biggest problem with John and his diet is my inability to say no. He wants so much to go to restaurants, like everybody else, and that always gets us into trouble. The batter on the nuggets contains hydrolized protein and corn starch, soups and stews contain yeast or yeast extract, salad dressing contains vinegar, the steak is often seasoned with "spices", the bun on the burger contains malted flour, the pizza crust contains caseinate (Hungry Howies), the oil on the fries contains beef flavoring (McDonalds), the pad thai noodles have a fermented fish sauce, all chinese dishes contain soy sauce, the pancake batter contains buttermilk (Ihop), and on and on. I think we finally know how to cook for him at home, but when we're on the road there isn't much he can eat.
I can't believe these cookies are fermented the way bread is. There couldn't be any hidden amines or glutamates. In fact the most MSG-sensitive people on Earth can eat these cookies - I checked. Is there something else in these cookies, not listed on the package, or does wheat change chemically when it is baked?
In an effort to crack this conundrum we made our own oatmeal cookies using essentially the same ingredients. Pure as can be, plain and simple. The cookies baked for about 10 minutes. They didn't ferment; they didn't burn. I told him to eat plenty of cookies, and he happily obeyed. I wanted to know for sure whether baked wheat was a problem. Well I found out.
The next day I had to hold him down in his room for several hours, so he wouldn't trash the place or harm himself or others. He didn't threaten anything animate with the scissors, but I took them away just to be safe. This was probably the worst reaction I'd seen in four years.
"Is it big today?" I asked. For a brief moment he was able to step outside himself and answer my question. "Oh Daddy, it's huge!" Then he went back to crying and screaming.
If you've been following this story from the beginning you know that several years have elapsed. John is becoming a big strong boy. If we don't figure this out soon I won't be able to contain him.
All right, let's review. Gluten seems ok; he eats pasta and pancakes all the time. Dairy is ok; he eats some ice cream almost every day. Sugar is ok in moderation; homemade lemonade is his favorite drink. Either something happens to wheat when it exceeds the boiling point, or salt is a problem. We've known for a while that MSG is bad, but I always suspected the G, never the S.
At this point in the narrative you don't know John's race, because up to now I didn't think it was relevant. However, African Americans, as opposed to African Nationals, have trouble eliminating excess sodium. This is a lasting legacy of slavery, where unnatural selection favored black individuals who could retain salt despite great heat, dehydration, and deprivation. Now these survival genes find themselves at odds with our 20th century western diet, which is extremely high in salt. The black community is unusually susceptible to hypertension and stroke, and a low sodium diet is recommended for this segment of the population, and perhaps for the rest of us as well.
What if a small percentage of these African Americans have additional symptoms that result from an electrolyte imbalance? I've seen patients with improper sodium or potassium levels before; it isn't pretty. Symptoms can include rage, paranoia, hallucinations, depression, lethargy, you name it. So I wonder - is there a connection?
I did some math; the cookies that he ate contained about 1,300mg of sodium. That's a lot, but he usually does well on Aunt Jemima pancakes, which contain almost exactly the same ingredients with the same amount of sodium. We ran this test again, just to make sure. Six pancakes in the morning, containing over 1,000mg of sodium, and he's fine. Flour, oil, sugar, salt. What's the difference? It has to be the method of cooking. This is not unprecedented. Amine-sensitive individuals know very well that cooking methods can create amines. But I've talked to these folks; they can eat these cookies. Apparently baking produces some other chemical that drives my son insane. What could it be? There is no book I can read - no web site I can visit. This seems unknown to science.
Here is another data point. Baked sweet potatoes are fine, but if I slice them up and add a little oil, and bake them on a tray in the oven to make homemade fries, the demon returns. There's something about baked oils, something very bad. And all this is separate from his MSG sensitivity.
Unsaturated oils might oxidize under high heat, however, butter is highly saturated, and should stand up to baking. I don't know what went wrong with our cookies, but I guess we're going to keep him away from baked goods for a while.
Have you ever played the game Battleship? The homemade cookies were a hit, and there were only four ingredients: wheat/oats, sugar, butter, and salt. Four directions to guess: north south east and west. I'm sure you've gone all the way around your opponent's PT boat, splash splash splash, while he hammers away at your Carrier. Well it seems we've gone all the way around with his diet. We tried low salt, as described above; he only got worse. Then we tried no butter and low fat; no good. Next we tried gluten free, for the zillionth time; and he's even worse. The only thing left is sugar, and as if in confirmation, the strange breath is back. I haven't smelled that in a long time. Apparently candida, or something, has returned.
In retrospect, this is not surprising. We decided that fruit, by itself, was ok. In other words, natural salicylates are not an issue. So go ahead, Have all the fruit you want. It's healthy. It's good for you." Well it's even better for the opportunistic yeast.
Once the candida takes hold, you almost have to start back at square one. We put John on a low sugar diet, and I'm reading all those yeast books again.
What to do about starch? Some books claim carbs are carbs, and should be avoided altogether. Some books say starch is different, and doesn't really promote the growth of candida. A few articles say starch is good, and patients should eat some pasta in moderation. The idea is that the good bacteria utilize starch better, or faster, or more efficiently than the yeast, hence they out-compete the candida. Well that's the idea anyways. I don't know whom to believe, and I'm sure the answer depends on the particular strain of yeast, the remaining intestinal flora, the precise makeup of the diet, and the patient's immune system.
We're permitting a moderate amount of starch, simply because we have to. John would never tolerate the 100% meat and veggie diet that is the first line of defense against candida. He has to have his noodles and his chips. So on we go with low sugar, moderate starch, and low MSG.
Within a week or two I convinced myself that candida was not the problem; he's had too many good, high carb days. I mean there are days when he's had oatmeal and syrup, pasta, potatoes, sprite, ice cream, and so on, and he's been great. It just doesn't make sense. None of it makes any sense.
One thing's for sure, the homemade cookies were a disaster of unprecedented scope, and all those ingredients seem safe in other contexts. So once again I started looking at the chemistry of cooking.
The maillard reaction became my prime suspect. Protein and sugar combine, at high heat, to make an assortment of compounds not found in nature. John could be reacting to one or more of these compounds. To learn more, type "maillard reaction" into google and find hundreds of web sites. Here is a place to start.
Butter promotes the maillard reaction, and he's always had trouble with butter cookies. He also reacts to sliced sweet potatoes, but not baked sweet potatoes.
I added the previous chapter, on maillard reactions, to this blog, and within three days I received an interesting email from an objective reader who was able to weigh the evidence of my experiences without becoming emotionally involved. His letter is summarized below.
|Oh man, it's the sugar. You've gone around and around it for years. You've ruled out everything else. Seems like every three months you talk about carbohydrate reactions, and then you back away from it. You've read all the candida books, but you don't want to believe it. You've smelled the byproducts of candida on his breath and skin on three separate occasions spanning a period of two years. That's the smoking gun. Don't go off on yet another tangent looking at maillard compounds. You've been on enough tangents already.|
A candida patient can have a great day, a great week, even a great month on a high carb diet. Sometimes the yeast colony is held in check for reasons that we'll never know. And sometimes it explodes into a teeming infestation, whence even modest amounts of sugar can spell trouble. My evidence, good days here and there with lots of sugar, is circumstantial. Contrast this with the unequivocal fact of the fermentation products on his breath, so concentrated that even a human can smell them. My dog must think I'm an idiot. Case closed - court is adjourned. This does not mean candida is the one and only issue in John's past present and future, but with his headaches and asthma and nasal allergies cured by other dietary protocols, candida represents our last great battle, and it's as serious as any of his prior maladies.
Keep in mind, I've got advanced degrees in technical fields. I wrote, single-handedly, the Math Reference web site. I mean I'm very intelligent, and well grounded in the scientific method. So why do I have to have somebody else read my journal and render a diagnosis for me?
Apparently none of us are truly objective about ourselves or our children. We have too many desires, fears, and biases. Remember when I quoted Richard Feynman, saying science keeps us from fooling ourselves? Very true; but we all have to do it together, and watch each other, and correct each other's mistakes, and compensate for each other's biases.
So why am I so afraid of candida? Why do I run away from this conclusion every time? Why did I have to shoot all the way around the PT boat, saving sugar for last? Why can't I get past denial and bargaining, and jump straight to acceptance? The reason is probably obvious to you, the dispassionate reader, but I am just beginning to understand it. Only now has it been dragged from the dark recesses of my subconscious into the light of day. I'll do anything to avoid the candida diagnosis because I don't think John can follow the prescribed, ultra-low carb diet. I even said this much in the last chapter, did I not? Allow me to quote myself.
"We're permitting a moderate amount of starch, simply because we have to. John would never tolerate the 100% meat and veggie diet that is the first line of defense against candida. He has to have his noodles and his chips."
Well guess what. He can't. At least not for a while. The good news is, candida usually abates, and most people find they can eat more and more carbs, but only if they follow the low carb diet religiously for the first few months.
So now that I'm awake, and can smell the coffee, how can I keep John on 60 to 80 carbs per day? How?
There's something new in the 21st century, something that really pisses me off. It's the school system. They insist on serving snacks at mid morning, and snacks in mid afternoon. When I was a kid we ate lunch - that was it. After kindergarten we were done with naps and snacks, thank you very much. A diabetic girl in my class had scheduled snacks, and everyone else understood it was a medical thing. We didn't clamber and whine and complain, we just went through our school day. We ate lunch - lunch that we brought from home - that was it - that was enough. Well not any more.
In addition to these two scheduled school-day snacks, there are surprise treats when somebody has a birthday, and more treats for good behavior. If the class reads a certain number of books they all get a pizza party. If they do something else it's an ice cream social. What ever happened to stickers? This obsession with food makes my life, and John's life, ever more difficult. Follow along as I do some math.
Suppose John eats 80 carbs per day, amongst breakfast lunch and dinner, and perhaps a dessert. Well that's not too bad. Serve 20 carbs for breakfast, 20 for lunch, and 40 for dinner + dessert. If dinner is meat and vegetables, you might have room for some fruit, or maybe even a small pastry. Now let's solve the same problem with everybody grazing all day long. John has to eat 7 times a day: breakfast, morning snack, lunch, mid afternoon snack, home from school snack, dinner, and dessert. He can't skip any of these mini-meals because his classmates or his sisters are eating right next to him, and he's not strong enough to sit there and abstain. When others eat, he's hungry. I don't blame him - I'm the same way. So the breakdown is basically 10 carbs per event.
Lunch is almost manageable. He can take some meat and vegetables in his lunch box and heat them up in the microwave. But what kind of portable tasty snack can I give him that will compare favorably with the cupcakes and fruit and chips that everybody else is eating? I have to come up with two school snacks every day, and he doesn't particularly want the same snacks day after day.
As I write these words, I really can't think of a thing. Ok, I can think of one low-carb snack that he likes, fresh red pepper strips. And if I put a lid on the number of crackers, possibly crackers and cheese. Two snacks, that's it. That's all I can think of right now.
With all that said, I'm sure you understand why I would do anything, try anything, to avoid the candida diagnosis. It was all being done subconsciously, but it's plain as day if you read this blog from the beginning. I know what must be done, but I don't know if we can do it. We need a long list of tasty 10 carb meals and snacks, and right now I'm coming up with perhaps 7 meals and 2 snacks. Yes, I've read the menus in the various yeast books, but they're not very helpful. They assume you eat three meals a day and that's it. If only life were that easy. The only snack ideas in those pages are carrots and celery. Hello! John isn't going to eat celery sticks while his classmates eat cupcakes. Ain't gonna happen.
And what about the sodas? Sprite and 7-up are nearly failsafe, and very low in glutamates. Yet John reacts badly to these. I was blaming the sugar, and thinking about candida, but it could also be the phosphates. Soda contains phosphoric acid. Or it could be the benzoates??
In order to separate these two ideas, I deliberately tested the candida theory again. Two glasses of fresh-squeezed apple cider, baked beans, a peach, and a banana. What happened next day? He looked great, and he had a great day at school. Lots of carbs and another good day - I don't know.
Of course I'm not looking for a 100% psychotropic solution. He's got candida, and we've got to get rid of it. That has to be the number one priority. I wrote the following and gave it to the doctor, who was surprisingly open minded about the whole thing.
In the interest of fixing the problem, rather than treating it indefinitely,
we have observed the following correlations over the past two years.
This information may help us treat the symptoms more effectively now,
and ameliorate the symptoms in the future.
The following table presents symptoms as a function of carbohydrate intake,
either simple or complex.
The form of sugar doesn't seem to matter.
Even GFCF failsafe foods such as rice, potato, and pear produce the same symptoms.
The table begins with 120 carbs per day, because that's as low as John will go.
I wish we could explore 80 carbs per day,
but that seems impractical at this time.
120: Lack of focus, low frustration threshold, difficulty carrying out boring tasks such as household chores. A wonderful kid at home, plays well with friends down the street. Bright, interesting, engaging, imaginative.
160: Oppositional, especially at school when he is asked to do things that aren't precisely what he wants to do. Refuses to follow directions. Traditional ODD symptoms come in at this point. Still plays well with others, and is great with young children.
220: Extremely impulsive. Makes inappropriate noises and blurts out swear words, similar to Tourette's. Tries to clean the kitchen with an excess of soap and water; generally makes a mess. A touch of OCD. Absolutely no focus. Has to be the center of everyone's attention. At this point he is not functional, even in a home setting.
300: Violent fantasies, actively looks for things to break. Threatens people around him, though he doesn't act on these threats. Hyperactive, running about, can't sit still. Traditional ADHD symptoms come in. Has to be monitored at all times. Often has to be physically managed.
400: Self destructive behavior. Hits himself as hard as he can, and has to be restrained. He says simply, "I have to do it." This child, whom we never see unless we run the 400 experiment, would have to be institutionalized. We last ran this experiment on 08/18/2002, the oatmeal cookies.
120: No scent that I can detect.
160: A slight yeasty smell on his breath, if he breathes directly in my face.
220: I can smell the yeast and/or its metabolites if he is sitting next to me and talking towards me, or facing me.
300: The yeast is apparent, even one to two meters away. Someone else wouldn't recognize the smell, but they would know something was amiss. At this point some of the yeast products escape through his pores. I can smell it on his skin.
400: His entire bedroom is filled with the smell, like walking into a brewery.
The presence of gluten in the diet makes the smell, and the behaviors, somewhat worse. Symptoms normally associated with 300 carbs appear at 220, and so on.
Digestive disorders begin around 160 carbs, with excessive flatulence. This progresses to loose stools, and eventually diarrhea at 400 carbs. Nasal allergies kick in at 300 carbs.
The doctor prescribed an antifungal regimen to beat back the candida, and she recommended probiotics thereafter. She also talked to John about diet and moderation, especially when it comes to carbohydrates. In other words, "Your Dad isn't crazy, listen to him." Nice to have an authority figure back me up for a change.
She really hit the nail on the head when she said, simply, "He eats to much." We all eat too much, don't we? And if you eat too much food, you almost certainly eat too many carbohydrates. John has eaten adult portions since he was five, and maybe that's the problem. I'm afraid I don't set a good example. If the food tastes good I'm in line for seconds and thirds, whether I'm still hungry or not. Our ongoing diet has to be low carbs, and less food across the board.
We went on to discuss psychotropics. Two drugs seem promising. One is a reformulation of ritalin, and the other is wellbutrin, which is relatively new. We haven't started either of these yet, and I'm not sure which way to go. For now we're trying to evict the candida and see where that leaves us.
The day before new years John had a terrible reaction to a simple stir fry. This was a low carb meal, nothing but meat and vegetables. There were no sauces, and few spices. Granted, the dish had its share of salicylates and amines, but I think we've ruled those out. That's not the problem. So where does that leave us?
The vegetables, asparagus and broccoli and cabbage, are all high in oligosaccharides - sugars that no human can digest. I described these in an earlier chapter. These make their way to the colon and feed the microbe, in this case a bad microbe, which then dumps its toxins into the blood stream. Sure enough, the smell is back, resembling fermented grain. But this time he ate no grains, and not a lot of carbs. We have a portable ethanol meter, the kind used by drunk drivers, and it reads zero, no ethanol at all. But there's definitely something there; I can smell it from two meters away. I wish I had a mass spec.
I'm slowly starting to decipher the sugar connection. It doesn't matter how much sugar he eats; it only matters how much sugar reaches the colon. And oligosaccharides always reach the colon, every single gram. He shouldn't eat any of these, at least not yet. No wonder the failsafe diet was such a disaster. It is replete with wheat, oats, cabbage, brussel sprouts, rutabaga, and lots of legumes, a veritable cocktail of oligosaccharides. So I gave up on the failsafe diet and started counting carbs, but I was still serving lots of low-carb vegetables and legumes. These all contain non digestible oligosaccharides (NDOs), which pass straight to the colon and feed the bacteria.
I typed "oligosaccharides" into a search engine and found lots of articles, all promoting the health benefits of these compounds. NDO supplements are available everywhere, for humans and for livestock. These sugars usually promote the growth of good intestinal bacteria, which protect the host from various digestive disorders. I couldn't find a single article that suggested these sugars might feed an unwanted colony of bad bacteria. Nobody is talking about an NDO free diet.
While trolling through the Internet I stumbled upon a fascinating ndo symposium, and I wrote a quick email to the keynote speaker. To my surprise he replied right away, and was very interested in our story. I gave him a one-page summary, including a description of that strange smell. Here is his response. It is truly prophetic. You'll see, later on in this blog, that he is spot on.
|Candida doesn't usually smell like that. That's propionic or butyric acid. You're right, sugar is being mal-digested. His small intestine could be physically short, or he could be enzyme deficient. Any form of sugar that reaches the colon could spell trouble. I'm guessing the bacteria is Clostridium Defficile, or a close relative thereof. Don't try a GI antibiotic though; that could wipe out more friends than enemies and make things worse. Don't try a dairy probiotic either, such as yogert. If he is even a little bit lactose intolerant, which would not be unusual, the lactose sugar will pass to the colon and feed your unwanted guests. This will completely swamp the probiotic benefits of the yogert.|
Of course we had been giving him yogert all along.
We need to consider each sugar in turn. Pure glucose is probably ok. It is absorbed quickly and never gets to the colon. The same is probably true of fructose. If we ever return to baking we should use these simple sugars, available at healthfood stores, rather than table sugar.
Starch is broken down by amylase, and I don't think this is a big problem. Apparently he has enough amylase to go around. That's why he can eat rice and potatoes. But not wheat or oats; these are high in NDOs.
What about sucrose and lactose? These require invertase and lactase respectively, and he might be deficient in these. Too much sucrose, from natural fruit or from the sugar bowl, will exceed his digestive capacity, and the remainder moves on to the colon and feeds the bacteria. So we must continue to count carbs, at least the disaccharides.
As you can see, we are constructing a rather elaborate formula based upon the quantity and type of each carbohydrate. Other variables may also influence the rise and fall of his bacterial colony. No wonder it has taken us four years to get this far.
Within a day John was eating the same foods he ate before, and his stools were normal, but his behavior was off the scale. The simplest request would elicit an explosive tantrum. This continued for a week - maybe two. I don't believe his diet changed in any significant way after the flu, but something was amiss. He was reacting to everything. Dairy seemed to evoke nasal allergies, and we hadn't seen those symptoms in months.
I did some research and discovered that the flu, or any other form of intestinal distress, can strip away the enzymes that are needed for digestion. This is especially true of lactase, but it holds for all enzymes to varying degrees. It takes days, maybe weeks, to rebuild those enzymes. After the flu John was unable to digest his food completely, and the still unidentified pathogens thrived on the excess carbohydrates. In retrospect we should have cut back on carbs and avoided dairy for a couple weeks, giving him time to rebuild his store of enzymes. I didn't know any of this at the time. Of course he was eating cereal and milk almost every morning.
If nothing else, this episode demonstrates the undeniable colon-brain connection. If he isn't digesting his food properly, he's not the same boy.
Meds are written to a particular prescription, a fixed force that pushes back on the building. If the wind varies from day to day, the meds will be woefully inadequate on some days, allowing the building to lean left. On other days the meds will be too strong, pushing the building to the right. As long as his symptoms vary from day to day, medication is not going to help. I've seen this in my home, and I've tried to explain it to his teachers at school. "We're not even going to try meds again," I declared, "until his symptoms have stabilized."
Guess what? He's stable. When John is on the antibacterial diet, a somewhat modified version of the anticandida diet, the wind blows at 25kph every day. We're ready to try meds again.
When we picked John up from his group home four years ago, his caregivers warned, "Don't try ritalin. It's a disaster. None of the drugs work, and we've tried them all, but ritalin is the worst."
Well we did try ritalin, and some days it helped, but some days he became autistic. It was horrible. We've never seen these symptoms before or since. When the wind is blowing hard, ritalin deflects the building, so that it falls in a different direction. He becomes autistic instead of insane. I'm not sure which is worse.
Yet somehow I always felt ritalin would help. I thought it was the right drug. So we decided to try it again. His doctor prescribed a time-release 20mg tablet, which is a pretty low dose for someone who is almost as tall as me. I gave him the first pill on Sunday and didn't really see any change at all. So we gave him the second pill on Monday and sent him off to school. That afternoon we got a call from his long-suffering teacher.
"If I were younger I'd be doing cartwheels. In the past year and a half, I've never seen him look this good. He's doing work that I thought was simply beyond him." She continued to sing his praises for the rest of the week. This is clearly the best school week he's ever had. Maybe ritalin is a wonder drug after all.
"Wait a minute?" I hear you cry. "Aren't you dead set against ritalin?"
Well - I try not to think in terms of black and white. I try to keep an open mind. I saw Dr. Crook, the Dr. Crook, on TV the other day. He's 85 and sharp as a tack. The host asked him about ritalin, and he responded this way.
"If you need ritalin, or some other medication, then take it. But you don't want to take it, day after day, year after year, without searching for the underlying cause. I mean, suppose you got a headache every night. You wouldn't suffer in silence, you'd take something for it, right? But if it happens every night, you and your doctor would want to know why. I don't understand why doctors don't take the same attitude towards ADHD. But they don't. They just throw up their hands and prescribe ritalin year after year."
I believe we will cure John's disorder eventually, but in the meantime we have a drug that will help, with virtually no side-effects, and it would be irresponsible not to use it.
John remembers when he was on asthma medication. He knows he needed it to breathe, and he also knows he doesn't need it any more. The same is true of Mary. In addition, Mary use to get headaches three or four times a week. We gave her tyenol as needed, and there's nothing wrong with that, but she doesn't need it any more. I'm taking the same approach with ritalin. He needs it, and it helps, so we're going to use it. At the same time, I will continue to treat his disorder with diet, and probiotics, and anything else that makes sense, and perhaps someday the winds will cease, and he won't need this medication any more.
Even when she is well she isn't really well. She often wakes up with a stomach ache or head ache. She lies around in front of the tube, then wants McDonalds for lunch. Of course she's all better by 3:00, ready to go out and play. The psychologists would have a field day with this one.
"It may be subconscious - she's creating the problem herself. You see that don't you? She just wants to be with you, or maybe something is bothering her at school. Have you talked to her about this?"
Actually we haven't, because the problem is not in her head. She really does wake up ill, especially on Monday morning, and it can take most of the day for her to recover.
Her emotions are out of whack too. It's subtle, and you might not notice it from afar, but little things make her sad, or frustrated, or both. She wasn't like this before. She was always a happy girl, one of the happiest kids I know.
Here's another piece of the puzzle. Beth is clearing her throat a lot lately. She's done this before, a couple years ago, but then it went away. At the time I attributed it to MSG. She was eating frozen dinners with MSG almost every day, and when she got tired of them, and stopped eating them, her symptoms went away. Well - the clog is back, and it's very distracting to those around her, especially at school.
I know from experience that constant throat clearing is a classic reaction to food or food additives. Apparently Beth has joined the rest of us mere mortals. Welcome aboard; looks like we all react to something.
Beth would like to stay above the fray, eating anything she likes, but last Saturday made that impossible. Her reaction was so severe she could hardly breathe. We need to figure this out quicly.
John and Mary are almost gloating. For four years they've watched Beth eat pizza and candy and pop, while they ate boiled chicken and green beans and rice. For four years Beth has gone to friends' houses without a care in the world - no special food arrangements, no uncomfortable situations. For four years Beth has gone on field trips with her class and eaten, well, whatever. McDonalds, KFC, Taco Bell - whatever. This was a constant source of frustration for John and Mary. Don't get me wrong; these three are about as close as any siblings I've ever known. You'd swear they were raised together from birth. They play together, and help each other, and care about each other. But there is always going to be tension when one can do anything she likes while the others are severely restricted. Now it seems the shoe is on the other foot.
Trouble is, we don't know what Beth reacts to, at least not yet. We're starting from scratch. Fortunately I've learned a valuable lesson over the past four years: natural foods cause more allergies than manmade additives, on average. I'm not going to worry about red#40, and I'm not going to count carbohydrates, at least not yet. We're going to cut out wheat, corn, or dairy, and see what happens.
As I start work on Beth's diet I have another advantage; I know her genetic history. This puts us half way around the board. "Advance token to Illinois Ave." I react to corn, and she might too. She ate a truck load of corn last Saturday, and is still clearing her throat three days later, so let's go with that. Yes, she also ate wheat and dairy and soy, and lots of additives, but I still think it's the corn.
24 hours into her new diet, and Beth is frustrated to tears. She only likes a handful of foods, if you can call them foods, and they all contain pretty much everything. I told her that this was an easy diet, especially compared to the regimens that John and Mary have endured, but that didn't cut any ice. She wants her six comfort foods, over and over again, and she doesn't want to start reading ingredient lists. I don't blame her, but that doesn't change the hand she's been dealt. She needs to be on a diet, starting today, and there's very little room for compromise. I just hope corn is the answer. I don't want to take on another four-year project.
Well here we go again. After a few tests, corn seems to be ok, so let's eliminate soy. Unfortunately soy is in everything, and Beth is a very picky eater. She only likes three homemade meals and five restaurant meals. I'm not talking steak and potatoes; I'm talking chicken strips and fries, pizza, onion rings, etc, all swimming in soy oil. That's what she craves, and if she doesn't get it the tears flow. She just doesn't like anything else.
I'm not going to be able to prove or disprove this theory until summer. The school lunches have too many variables. Every lunch has some soy, either a little or a lot. There's no way to know. She won't eat anything cold, like a sandwich, and the prepared foods she might take and heat up in the school microwave all contain soy - sometimes a little, sometimes a lot. There's know way to know. So for now I'm letting her eat most of the school lunches, and I'm trying to keep her off of soy at home. She still clears her throat and coughs, but less than before. She wakes up well every morning and hasn't missed a day of school. No strep, no head aches, no stomach aches.
If soy is the culprit, and if her sensitivity gets any worse, she may not be able to eat the school lunches at all. This is ironic, since John and Mary have started eating the school lunches again. There are a few lunches with too many legumes or carbs, but most lunches can be squeezed into our carbohydrate budget, especially if John skips the cooky or breadstick or whatever. After four difficult years of packing lunches for John and Mary, we may wind up packing lunches for Beth. You never know where this story will lead.
These drugs were totally ineffective, or should I say inadequate, when John ate a typical western diet, so we're not surprised when he begins to escalate. We get a call from school one morning asking if we remembered his medication, as John bounces around the classroom. We reply in the affirmative, and his teacher is surprised. Fortunately John straightens himself up and has a good day, but this is the beginning of a downwardl spiral. By the end of the week he is in time-out, a place he hasn't been since December. His teacher calls again. He is quite concerned, as he should be. John has definitely not had a good week at school. The teacher also makes his recommendation. Now pause for a moment and try to predict - what did the teacher suggest?
"I think you need to increase his medication. You said he was on a low dose. I don't think it's working any more."
I wanted to tell him about John's diet, about the carbohydrate connection. I wanted to tell him we expected this, and that his recent bad behavior could perhaps be put back in the box. I wanted to explain it all, but I decided it was pointless, like telling him I was going to pray to Zeus. So I told him I'd call the doctor and see what we could do about increasing John's meds. But I think the dose is fine; we simply need to return to the diet that works, the diet we've spend four years sculpting by hand out of the hardest marble.
My wife Wendy is overweight, and it's been getting worse during the past 5 years. We've been so busy taking care of our kids, we forgot to take care of ourselves.
Wendy's aunt Sara died last year at a relatively young age. Sara was diabetic most of her adult life, yet she ate sugar with reckless abandon. "I just take more insulin to make up for it." she quipped. Ten years ago she developed diabetic neuropathy, a horrible, painful condition. Other complications soon followed, and we were almost relieved when Sara was finally at peace and pain free.
I mention this because Wendy has a quarter of Sara's genes. She also has half her mother's genes, another lifetime diabetic with burgeoning neuropathy. Her grandfather also suffered from neuropathy. If Wendy doesn't lose weight, her future is preordained, and it isn't pretty.
A nearby hospital has a weightloss program, and Wendy attends the introductory meeting. They recommend a liquid diet - no food at all. You just drink their shakes morning noon and night, and pay $500 a month, assuming our insurance won't cover any of it, and it probably won't. Well Wendy would give it a go, and I'd certainly spend the money, if it would work, and if it was the only way. But I've been studying diets for ten years, and I think there are other options. Three, to be precise.
A) The Zone diet. This has a high success rate, but requires careful planning and tracking. Restaurants are out of the question, and we all love to go out to eat. No - we need a diet that is compatible with at least some restaurants. We just don't have time to cook everything from scratch and count carbs, proteins, and fats.
B) Low carb - about 80 per day. Wendy likes this one because she gets an occasional piece of toast or chocolate, if it fits within her carb budget. But it still requires careful planning, and it's very easy to fall off the slippery slope, especially at a restaurant. "Well that looks like a cup of potatoes, I think. How many carbs are in a cup of potatoes? I don't remember. … Let me taste that dressing. That doesn't taste too sweet. I don't think it has much sugar in it. I'll just put a little on my salad." So much for plan B.
C) No starches, grains, or processed foods. Wendy eats meat, fish, fruit, and vegetables, in their original forms. There's no slippery slope here; the diet is well defined. And it is almost restaurant compatible.
D) The hospital-monitered liquid diet. Wendy doesn't think she can drink prescribed shakes morning noon and night while all around her are eating real food. And she has to go back to food eventually, so why not skip the middle step?
On May 1st, Wendy begins her new diet, which is a radical departure from her former eating habits. The kids hardly notice, because she doesn't whine and complain - but it is a very difficult regimen. It's certainly more restrictive than John's diet, and I'm going to mention this the next time he complains about his lot in life.
I hope diet (C) works for Wendy, because we really don't want to move on to (D).
Suppose the engine of your car is just a little bit off. It sputters and pops once in a while, but it mostly works. There are three things to keep in mind.
John's metabolism is the car engine, and food is his fuel. Something causes his engine to misfire. Translation of the above points:
I spent a summer in Africa, and I paid close attention to their diet. They ate lean meat (mostly goat and chicken), boiled grains (corn and sorghum), a few vegetables, and some fruit imported from South Africa as a treat. They drank water, tea, and not much else. The adults drank a homemade beer made from fermented grains, but only in small quantities, because it was somewhat labor intensive to produce. You'll notice there aren't any artificials, and I use to think this was key. Well I don't think so any more. You could add red#40 and BHT to their diet, and I'm sure a few kids would react, but not many. The salient difference between the African diet and the western diet is the concentration of the fuel. We pack more energy into a Hostess cupcake than an entire African lunch. And we don't eat our fruits any more, we drink them in the form of juice. It's easy to gulp down the equivalent of three or four apples in one glass of cider, and we feed it to our kids. Then we get older and we drink soda, more concentrated sugar. Have you ever tasted raw sugar cane right off the stalk? I have, when I was in Hawaii. Yuck! It's a long way from this fiberous stalk to the sugar bowl.
The 5000 year old Ice Man, discovered at the Italy Austria border, ate some wild grains, but this is a far cry from flour. Wheat, rice, corn - it doesn't matter the grain - they're all concentrated starches.
Fats are also concentrated. Everything is fried in oils, but where in nature do you find a bottle of oil - even a "healthy" unsaturated oil? You don't.
All our foods are concentrated, an we are not equipped to handle this. There may be thousands of kids in Africa with John's disorder, and they have no idea anything is amiss. These genetic variations were not particularly detrimental until we started concentrating our foods. Is this why 7 million Americans are now on ritalin? I wonder.
Perhaps most of us don't have colonies of foreign microbes in our guts, yet we all suffer the effects of macro-nutrient magnification. Sugars → diabetes/obesity, oils → cardio-vascular, wheat/dairy/corn/soy → various sensitivities and allergies, and even salt → hypertension. We'd better start eating real foods, in their original forms.
She spent two weeks doing some research, lining up a series of tests that she thought would shed some light on the subject. She prescribed them all in one go, so that the lab tech could draw blood just once. It's a good thing too - John was hysterical with fear. Wendy and the tech had to hold him down while she filled 11 vials with blood. Some of these tests had to be sent to the Mayo clinic, so we had to sit back and wait. Meantime I could run a few tests of my own.
One night John had the strange breath again, and he was aggressive and defiant and irrational and hyperactive, and all the behaviors that go along with. This time I was prepared. We bought some ketos test sticks from the local drugstore. We took out a fresh stick, exposed it to John's urine, and - nothing. No glucose, no acetoacetic acid. So that's not it. This is not a derailed Krebb's cycle, as I suspected earlier. No ketone body in the urine. And once again no ethanol, as per our portable meter. What could it be?
A week goes by, and John tells me it really hurts when he urinates. Now this is the proof I've been looking for. I mean, young boys don't usually get bladder infections. It has to be the bacteria inside, spilling out into his urine. Nobody believes my bacterial theory, but now I have proof. I capture the urine in a container and put it in the fridge. The next day we take it into the doctors. Well not quite - we have to make an appointment and take John too, even though he's been in thrice in the last month. Doctors have their idiotic protocol, and you just can't change it. So we sit in the waiting room and wait - then we see the doctor. She checks the urine that we obtained last night. PH is normal, and no bacteria. "No problem here." she declares with a smile.
Something is terribly wrong with my son, something that will eventually kill him if it isn't corrected, and there is no lab test that can confirm it or diagnose it. I go home more depressed than I've been in a long time.
I tell him I want to check his breath, and he pulls the blanket down, sits up, and gives me a perfect H, right in my face. Then he flops back down and covers up again. I ask him to put 3 fingers up and he does. This is no seizure. He's in there, but he's afraid, and he can't speak, although he seems to have all of his gross motor skills. I ask him what he wants to do next and he finds my dymo tape labeler. He turns the wheel to L and shows me the L. I acknowledge it, and he then moves it to U. Then N and C … he wants lunch. Breakfast was a long time ago; he's hungry. And he obviously found a way to communicate. Guess I'd better teach him the sign alphabet, in case this happens again.
I suggest a few things we might have for lunch, and suddenly he says, "Wow, I can talk again. I just broke through a red glass wall." His speech was back, as though it had never left. A part of me was, and is, fascinated. We talked about his experience for a while. He says he remembers the same thing four years ago, but I doubt it. I think he remembers me talking about it. In any case, it hasn't happened in the past four years, until today, and its never happened at school. That's what I really wanted to know. He's been on ritalin for most of the past 7 months, and this is the only occurrence in that time. The other three occurrences, four years ago, also involved ritalin, so ritalin is a necessary ingredient, but certainly not sufficient. I go over yesterday's menu, and he did eat something very unusual, a generous helping of barbecue potato chips. Normally we try to stay away from artificials, but lately I've almost given up. "Oh what the hell, nothing works, so go ahead, eat anything you like." The chips contain MSG, and autolyzed yeast (more glutamates), and smoke flavoring (whatever that is). I think there is a ritalin MSG interaction, at least in John's brain, which leads to fear and a complete loss of speech. This does not mean John is glutamate sensitive; it only suggests a drug/MSG interaction. I may test this theory, someday, but for the next few months I think we'd better stay away from glutamates, because you never know when he's going to need his ritalin.
As it happens, we ran another test a week later, somewhat by accident. He ate more glutamates, and the next day he said he saw the glass wall. "It wasn't as thick, so I could break through it." he reported. John had no ritalin that day. So it seems that glutamates are bad on their own, and should be avoided. When combined with ritalin, they are a disaster.
The blood tests haven't told us anything, although some are still pending. Meantime John is getting worse by the day. I can smell that mysterious chemical almost every night. I decide to change his diet once again. That compound can only be produced by a bacteria living in his digestive tract, so I insist on at least 5 grams of fiber with each meal. This is part of the protocol that really helped my wife's ibs. I know, this is a major departure from earlier theories, but what else can I do?
I keep going back to stale beer; that's the key. I return to google, and discover some articles on light struck beer, where the hops interaacts with light to produce mercaptans, chemicals which are also employed by our friend the skunk. These are short hydrocarbon chains with an SH, rather than an OH, at the end. Crotyl Mercaptan is definitely on the list.
So what causes mercaptans in a human? Lots of protein containing sulfur amino acids, and not enough water. It could be a harmless form of bad breath, but remember, I smelled the mercaptans on his skin. Not often, but I did once or twice. This is not the onion/garlic smell that sometimes ekes out of my pores, but the mercaptan of stale beer. It isn't oral bacteria, not simply bad breath; the chemical is in his blood stream, and probably in his brain. It's being made somewhere else, somewhere inside. There is a bacteria somewhere, and if we feed it cysteine and methionine, it produces mercaptans. If we feed it anything else, it still creates toxins that resemble or derail neurotransmitters, though the sulfurous smell might not accompany. Where does this bacteria live, and why can't we see it? Must we starve it into submission, or can we kill it with an antibiotic? I don't know. One thing's sure; only a bacteria can make that smell. A human, even a genetically flawed human, lacks the necessary enzymes. We are indeed chasing a microbe.
Ok, some of the tests are back, and the amino acids are off. Three of them are too high, and three are too low. This is trying to tell us something, but what?
There are three possible outcomes.
I was betting on #1, while the doctor was sure it was #2. In fact we playfully had a large pizza riding on the outcome. Well nobody has to pay up, because it was #3. He got much worse. We had to pick him up from school, kicking and screaming, two days in a row, and the smell was back, stronger than ever, although it was different, in a subtle way; purer, as though some components were missing. Our microbe is either a strain of yeast, or it is a bacteria that can evade or resist the antibiotic, and it is now multiplying freely, with all its competitors wiped away. I stopped the antibiotic halfway through the prescribed regimen. Yes, I can hear you crying out, especially you doctors, "Never stop an antibiotic after just four days." But hey, you don't have to live with the fallout.
During one of his terrible episodes we rushed him to the doctor. "What's that smell?" she asked. He didn't have to breathe in her face; it was apparent from across the room. This is what I wanted her to see. She wrote a script and we ran off to the hospital for a blood test. A few days later the results came back. The PH is low, and the smell is butyric acid. Not a ketone, not a mercaptan, but an organic acid. This is, as you will recall from an earlier chapter, exactly what a bacterial expert predicted from halfway around the world, based solely on my subjective descriptions. Course there may be other odoriferous, volatile compounds that they weren't screening for, but butyric acid is definitely one of them.
More searching brought me to the specific carbohydrate diet, abbreviated SCD, which admits simple sugars, but avoids starches completely. This diet has been in existence for 45 years, but only now is it growing in popularity. The autism community has discovered it, and in some cases it is more effective than their GF CF diet. I decided to give it a whirl. Sorry John, but we're changing your diet again. Actually, we can't change everything overnight, so we're simply taking the first step, a reduction, and eventual elimination, of sucrose. No cane sugar (and all its variants), no corn syrup, and no maple syrup. He had so much maple when we were trying to avoid cane, and it turns out that's no better; it's just another form of sucrose. Honey is the preferred sweetener on SCD, and we've never tried that before.
Well the reduction of sucrose seems to help a lot. This is about the tenth time I've proclaimed progress, only to recant three weeks later, so I'll bide my time and reserve judgment. I'll let you know in a couple months. For now, it looks like the reduction in sucrose is helping. I wish I could eliminate it completely, but he insists on eating most of the school lunches. Sigh.
Next child. "Beth is bright, but so sad and preoccupied. Is there something going on at home? She talks about John hitting and hurting her Mom. I think she needs to see a therapist to talk through all these issues."
And John, well, that's always the worst meeting of all. The conclusion is usually "No progress, no improvement. Although John is bright, he's falling further behind; years behind in almost every subject. And his anger will get him into serious trouble if we don't get a handle on it soon." What are they going to say today? More of the same?
John's special ed teacher opens with a question. "I was wondering if you changed his medication about a month ago? He's not been in time out for the past month, even once, and he use to be in the time out room every day. We've had no tantrums, no meltdowns. He's going to all his specials, gym art etc, and he can even be with the regular class for science and reading. Not every day, but maybe 50% of the time he can go to the general ed room for science. He's really very proud of that." The teacher looks through his logs. "It started about 5 weeks ago."
I explain about the blood test, and the butyric acid, and the yeast/bacteria that live in a protective biofilm in his intestines. These microbes are impervious to drugs; diet is our only recourse. Five weeks ago we eliminated sucrose. That was the first step.
They must think I'm nuts. They've thought so for the past five years. But now, finally, it's hard to argue with success. I tell them we will probably implement SCD 100% next semester, and we'll see what happens. We walk out of his school smiling, for the first time.
And it's not always John. Take Thanksgiving for example. We went to Wendy's brother's house for turkey dinner, and when we came home a $350 cell phone was missing. Each of my kids saw it in different places, and Beth says she saw John playing with it. Of course nobody actually touched it, or so they claim. Since they are all pathological liars, with an act that would impress Ronald Reagan, I don't know whom to believe. We learned later that Mary took the cell phone and hid it in her room, for reasons that still escape me. Unfortunately they bought a new cell phone in the interim, and now I have to reimburse them, even though I currently don't have a job. No paycheck, no income, and our savings are dropping fast. So glad all those tax cuts for the rich are stimulating the economy. Thanks a lot, George W. Bush. No worries though; my children will pay for these growing deficits with interest. Hey, who needs a balanced budget anyways? That's just so Clintonian. But I digress.
Yesterday John ate a restaurant lunch that we would not sanction on his new diet, but it was already prearranged. He earned lunch out for his good behavior. Honestly, that's how schools reward kids these days, with snacks and treats, and even trips to a restaurant. It's all about food food food. No wonder our kids are obese and diabetic. So yesterday he ate Thai noodles, a huge plate of starch and sugar. Now it's the day after, and we're ready for the fallout. Or are we?
The morning begins with John crying, because he found an "I hate you" note on his bed. Guess what? None of my kids wrote it. Liars every one! I have Beth write a quick letter of apology, because I'm pretty sure she's the one who did it, and we remind her that she's suppose to talk to us about her feelings, even her negative feelings, instead of sending hate mail to her brother. Finally everyone settles down, and we send them off to school.
We hope to spend some time with each other before the kids come home, and we're almost in the mood, when we get a call from school. Mary has stolen something, and is sequestered in the office. Wendy puts on her coat and heads out the door. What really happened, and what is an appropriate punishment? No, I don't think my angel daughter was framed. She's stolen before, e.g. the cell phone, and apparently she's stealing again. Christ, I thought we were past this.
Meantime John comes home and he looks terrible. "How was your day?" I ask, and he says it was "Gwate!", with his thumb in his mouth. Well this time he's not lying. He continues to have pretty good days at school now that he's off sucrose, but he has become a monster here at home. This reaches a crescendo at 10:00 at night, when Wendy asks him to pick his toys up off his bedroom floor. A simple thing, just pick up your trucks, but his ODD is off the scale tonight. He insults her in every way possible, and tells her that she should really go to jail for treating him so badly. Then he throws his possessions about. Once again Wendy is in her room crying. It's just a bad day.
There is one bright spot though. At the end of the day, John says, "I don't want to be crazy any more. I don't want to be mean any more. It's not fair." He is becoming self-aware, and has almost hit bottom. This may be what we've been waiting for. Perhaps now he will follow the SCD diet. Perhaps he will decide that his life is more important than eating what everybody else eats. It's really his choice you know, not mine. And at this moment in time, he says he'll give SCD a go.
The next morning we pack his lunch, a plain pork chop, squash noodles, and peas. Yeah, it doesn't sound terribly appetizing to me either, but that's all we have ready made that is consistent with SCD. So he picks up his lunch box and puts on his coat, but why is he going out through the garage? Wendy and I sit quietly and listen; he's getting into something. She opens the door just as he is dumping his lunch into the garbage can. Apparently he was going to buy lunch like usual, and come home with an empty lunch box. Well planned and well executed. Unfortunately this is the beginning of his carefully crafted lies, which will grow in scope and complexity throughout the years. We reel him in and the fight begins. We tell him he can't go to school if he's going to lie to us and eat the school lunches. Now he is kicking and screaming. We pull his shoes off in a hurry. Unfortunately his new winter coat gets ripped in the process, and I can't afford to buy him another one. He'll have to wear his old beat-up coat from last year, which really doesn't fit. finally he calms down as his ritalin kicks in, and we take him to school. We explain that he'll be bringing his lunch until further notice, so if he's standing in line to buy, something is terribly wrong.
I don't know where all this will lead. I have a blood test that points, unambiguously, to a chronic microbial infection, and I have a diet that might help. It's partial implementation has made a difference at school, so there is reason for optimism. But I don't know if he can stick to it, and I don't know when we can expect an improvement in behavior here at home. Soon I hope, but some autistic kids are on this diet for weeks or even months, 100%, no mistakes, before they turn the corner.
Just before Christmas we receive some happy news, my job has returned, with a steady paycheck. One less thing to worry about. Our relief is palpable. We have more patience with the kids, and more hope, and more joy. to top things off, Christmas day is a true delight. John looks good, really good, all day, with no meds. Just a good day, just lucky I guess, but I'm glad it landed on Christmas day.
It's obvious in retrospect, but the same thing happens with sound. He loves microphones and speakers; always has. He will turn up the volume until the house rattles. I use to attribute this to ego and self importance, and that may be part of it, but it is also another form of positive feedback. He hears his own voice and it gets him going.
The other day John was out on the driveway with a portable amplifier, talking to the neighborhood in general. He spotted one of our neighbors out on the porch for a smoke. With John's amplified voice circling back into his brain, his fascination with smoking, the police, and all things taboo took control. "Drop that cigarette and come out with your hands up." Now this is not going to win friends and influence people. Wendy jumped up from her work, ran outside, and reeled him back into the house.
John usually receives high praise from the neighbors. "He plays so well with our kids. … He's such a nice boy. … So smart, and not a bit shy. … So polite." Putting an adult under arrest for smoking hardly seems consistent with this behavior. When John calms down I talk to him about positive feedback, and mirrors, and microphones, and I ask if he would have said anything like that to an adult without a microphone in his hand. He thinks for a moment, and then says no. He knows I'm right. We need to avoid self-feedback in all its forms.
In early March John kicked a second hole in the wall of his bedroom, and we just couldn't see how he could function at camp, eating institutional food. Perhaps we could prepare all his meals ahead of time, a week's worth of three squares and snacks, but we didn't have the complete answer either. Camp was only two months away, and we didn't have a clue.
Back in January his pediatrician said, "If he can handle milk, it will help heal his intestines and rebuild the proper microbial colonies. You might want to give it a try."
during January and February we gave him a glass of milk from time to time, and the results were mixed. Sometimes there was no reaction, and sometimes he went crazy. I couldn't tell, so I decided to run the real test. Starting in mid March I told him to drink a carton of milk every day at lunch. Even if he brought his own lunch, he could still buy milk for a quarter. Within a couple weeks I could see a change. He wasn't cured, and he wasn't a whole lot better, but the wild variations were gone. It almost didn't matter what he ate. He still reacted to sugar, but starch seemed to be ok. He went back to eating rice, and potatoes, and even wheat in moderation, and he never went insane. He still had ADHD, and a pretty low frustration threshold, but he wasn't running around the house shouting "Bam! Bam! Bam!"
Sometimes on the weekends John would forget to drink milk, and by Sunday evening he was sliding back into his old self; something none of us wanted to see. So I offered cereal for breakfast, especially on the weekends, to keep his milk consumption up. Cereal is the last thing you should eat if you're trying to starve a carb-loving intestinal microbe into submission, but the benefits of milk seemed to outweigh the cost of the grain.
Week after week, at home and at school, John was reaching a stable equilibrium. He still had a plethora of symptoms, and he still needed his straterra, but each day was pretty much like another, and he could eat almost any meal he wanted to, and even an occasional sweet treat.
With new-found hope, we sent him off to camp. He ate spaghetti, pizza, lasagna, mashed potatoes, pancakes sans syrup, and just about everything else on the menu, and - pause for dramatic emphasis here - he was ok. Not great, but ok. You can't see it, but I'm sitting here shaking my head in disbelief. It was only a year ago that we tested spaghetti. The sauce was homemade - no sugar added. And the meat was pure ground turkey - no MSG or preservatives. So we were only testing wheat / starch. The next day was Mothersday, and it was one of the worst days we've ever had. John ran out of the house and all around the neighborhood. Nobody could catch him. He tore Wendy's flowers out of the front yard and stomped on them, then he tried to knock over the mailbox. Wendy spent most of that mothersday crying, and the girls were crying too. It was horrible. Now he eats institutional spaghetti, which probably has sugar in the sauce, and he's ok. What to make of this, and where to go from here?
I made another appointment with his doctor, but oops, my employer has changed insurance out from under me, and now his doctor, who has worked with us for the past five years, is not part of the plan. Isn't that sick!? The saddest aspect of the United States, domestically, is our Laissez-faire approach to healthcare. We need universal health insurance, and we need it today. At a minimum, health insurance should be disentangled from employment. My boss doesn't pay for my car insurance, or my home insurance; why should he be involved in my healthcare? Why should I lose coverage if I lose my job? It makes no sense. Instead, the government should provide healthcare for its citizenry, the way it provides a public education. Good health benefits society as a whole, just like education. That's fucking obvious, isn't it?
Besides being a good investment, it is a moral imperitive. A person shouldn't go blind just because she can't afford an operation. And yet, my beautiful wife will find herself in precisely this situation in just a few short years. That's coming up later in this blog, but for now we have coverage, and we are fortunate indeed.
Thanks to Medicaid, we can retain continuity in John's care. As part of the special needs adoption program, John receives Medicaid coverage until he is 18, and his doctor accepts Medicaid. So we can continue to work together to treat his medical conditions. The girls will have to change doctors though, and there's nothing I can do about that. Well - at least they get to see a doctor.
At the same time, my wife Wendy suffered from debilitating ibs for over a decade. She was so ill that she could not leave the house. It took me five years to come up with a treatment for her, based on fiber, carbs, and oils, and another five years after she was well to realize why this helped. We were finally feeding the good bacteria and starving the bad. Ten years later, we still have to watch her sugar and her oils.
Now, here are two people in my family who are genetically unrelated, and have no background in common. They lived in separate states for their entire lives, up to the point that they became ill. What are the odds that both of these people should suffer from a microbial imbalance?
That's probability; here is some statistics. Given that this has happened, how many people in the United States suffer from this problem and don't realize it? My family is of course too small a sample to answer that question, but it suggests a huge, undiagnosed epidemic.
Why has it gone unnoticed?
Because medicine tends to group people together by symptoms. We put all the people with a common set of symptoms in a room, look at all their data, and ask, "What do they have in common? why have they all jumped the tracks?" We don't group people with completely unrelated symptoms together. Nobody would put Wendy and John together and search for a common cause. And so, I believe we are entering the 21st century with a great deal of ill-health, caused by an agent that is not recognized by modern medicine, or even alternative medicine. Yes, much has been written about candida, but that's just the tip of the iceberg. Bacteria is the real problem, and there are millions of species to choose from, each producing its own unique blend of toxins. Combine this with the patient's unpredictable sensitivities and predispositions, and anything is possible. Allergies, arthritis, emotional imbalance, hives, infertility, I don't know, anything. And so we just can't seem to put the puzzle together. I hope, by writing this blog, I can make people more aware.
Why is bacteria a problem for so many Americans?
Because of our 20th century diet. In the 1700's our ancestors in England ate 7.5 pounds of sugar a year. Today in the United States we consume 20 times as much, 150 pounds a year. You don't need a Ph.D. in biology to know that evolution can't keep up. Mammals have spent the last 50 million years drinking milk, and so, the bacteria that thrive on milk and live in our intestines have become our friends, in a simbiotic relationship that benefits everyone. In contrast, the bacteria that feed on sucrose are strangers to us. They make us ill in a thousand different ways.
Why do we love sugar so?
Ultra-sweet substances taste good to us because the occasional stash of honey that we pillaged from a hive gave us a real boost, and that only happened a couple times a year, so no harm done. It tastes like fruit, only better. Evolution had no reason to throtttle our desires, because none of our ancestors was able to knock over a hive every day. Biology could not anticipate cans of soda at the ready. Now we eat 7 ounces of sucrose every day. Take your sugar bowl down from the shelf and measure it out. It's a lot.
The disorder wrought by our western diet is so subtle, and produces such a variety of symptoms, that we can't see it or understand it. Meantime teachers hand out candy as a reward, and pop machines line the hallways of our schools. What are the odds that the next generation is going to be very ill? Pretty good I'd say, unless something changes.
On Sunday I joined him in some ice cream, and both of our bowls were larger than prudence would dictate. Still, I love ice cream, and so does he. Maybe we'd get away with it. Well we didn't. Monday was horrible, and despite eating no sugar on that day, Tuesday was only a little better. By Wednesday John was almost back to normal.
Now fast forward a week. We are out running errands and the girls want to stop at Dario. Can John have a cone from Dario? I have reason to fear, but I authorize a small cone, and I pick one up for myself. "That's a lot of ice cream." I remark as I take my first bite. "Maybe we should have ordered the baby cone." But I stop and hold it in my hand. It's light. If I filled the same cone with Breyers, it would be heavy. All the books say to eat natural, and avoid artificials. If this is your prescription, Breyers is your best bet. It's unusual to see a Breyers container with more than five ingredients, and the stuff is darn good. But that's not John. He doesn't react to the artificials. Gums, oils, dyes, fillers; they don't bother him, at least not in moderation. Sugar is the problem, and perhaps starch, because it feeds the bad bacteria. Natural ice cream is dense, and has twice as much sugar by volume as soft serve.
I went home and did some math. The last bowl that put John over the top had 80 carbs. That's the equivalent of drinking three cans of coke. No wonder he was a wreck the next day. There are some things that milk and fiber just can't fix. I explained this to him, and not for the first time I had to recant an earlier position. When he eats ice cream, which would not be very often, it will be soft serve, with half the sugar.
We don't think much about John's disorder over the labor day weekend. We go to parties, visit friends, and have a good time. John avoids sugar of course, but he eats plenty of starch in the form of noodles and pizza and so forth.
Tuesday morning we get a call. "I guess he's excited about the events of the weekend; is there something you do to settle him down?" My heart drops through the floor, because there is nothing we can do, nothing anybody can do to settle him down. He has regressed. He is once again unmanageable, and cannot function in his special ed program, much less a general classroom. In the afternoon we get another call. They suggest we come pick him up from school. This scenario is repeated on Wednesday, Thursday, and Friday. Friday is the worst. He is singing songs about drugs, which sends the school into fits. John comes home and I can smell the chemicals on his breath. That hasn't happened in a long time.
Have you seen the voltage characteristics of a transister? Nonlinear - just like John's microbial colony. It remains small unless you give it just enough food, and then it explodes. And once it is big, you have to cut way back, way way back, to bring it down again.
I decide to try the SCD diet again, which we flirted with before. This is the one that avoids polysacharides. This time we're going to get serious. This time we're going to kill the microbes that are slowly killing my son. I decide to do the diet with him for solidarity.
Do you know how this diet begins? Plain meates, eggs, cheese, and grape juice. That's it. Within two days we move to the next stage, which brings in cooked fruits. Are we moving too quickly? Perhaps, but we can't live on protein and grape juice any longer. So a new week dawns, and we're slogging through a very restricted diet. John doesn't cheat, at least I don't think he does, who knows? In any case, he's not getting any better. This week is as bad as the last. By rights he should come to me and say, "Dad, you're full of shit. This diet doesn't work, and I'm going to eat anything I damn well please." He should, but he doesn't. He keeps trusting me, with the faith of a child. Meantime I'm opening the book and thinking, "This diet is full of shit." Course they have an answer for this. "It's die off … behaviors will get worse before they get better … some improve after two weeks on the diet; others take months." Isn't that convenient? Isn't that special? I'm suppose to keep John home from school and leave our family in tatters for months, because the diet just might take that long to perform a miracle. And if this isn't the right diet, well, what's another three months after he's already lost twelve years of his life? I'll figure it out eventually, and try something else.
No - this is lunacy! John changes by the day - sometimes by the hour. We've seen it. If this diet is any good, it should be working by now.
Suddenly it hits me; an epiphany. The book, and the members on the mailing list, keep stressing 100% compliance. Even the smallest trace of sucrose or starch can set you back. But fruit is ok. Is fruit devoid of sucrose? Is an apple 100% glucose and fructose, without the slightest trace of sucrose? I don't believe it. I call up google and find this website. An apple is 30% sucrose. What gives? I pose this question to the list and nobody knows the answer.
If a diet forbids even small amounts of most of the natural foods on Earth, then it is an extreme diet. A year ago our pediatrician said she didn't like extreme diets, because even if they were healthy, long term compliance was impossible. Setting this aside, there is a larger issue. Extreme diets are penny wise and pound foolish. You eschew hundreds of healthy foods, and cook the remaining foods in certain ways, to avoid this chemical or that, like someone with a serious case of OCD; meantime you are ingesting that very chemical in large quantities. The failsafe diet tries to avoid all salicylates, but if you eat any fruits or vegetables at all, you're going to get salicylates. And trying to avoid amines, while eating large cuts of steak, well I never did understand that one. Now I am swimming in yet another extreme diet. Don't let a trace of sugar cane enter your lips, because sucrose feeds the bad bacteria, but pay no attention to the 8 grams of sucrose in that apple. That's ok. Penny wise, pound foolish.
Extreme diets also make you paranoid. "Oh my God, he ate a potato chip, we'll have to go back and start all over again."
I can't put John through another extreme diet. I can't put myself through another extreme diet. I won't do it. Fool me once, shame on you; fool me twice, shame on me.
Meantime my son is still looking to me for answers. What are we going to do? The microbial infection is real. I can smell the volatiles on his breath, and we have the blood test to prove it. So what are we going to do? I think the best bet is the 50 year old advice from Dr. Truss. Eat approximately 80 carbs a day. That's the diet. That's it. It's not extreme. An extra potato chip won't matter. I don't have to worry about trace amounts of this or that, and I don't have to scrutinize labels like a member of CSI.
I make an appointment with a pediatric GI specialist. It's time to talk to someone who really understands this stuff. Remember the movie Lorenzo's Oil? The boy's father listened to everybody. Crackpot theories, established research, unproven hypotheses, everything. Then he was smart enough to figure it out for himself. Well I need to hear a couple more opinions, and then I better figure it out, because time is running out. If John isn't well by next month, I don't think he'll be looking to me for answers any more.
And what does the GI specialist have to say? Same old crap.
"I've seen many people use diet to affect behavior. It usually doesn't work. … All I'm really interested in is his digestive symptoms. … Well we all naturally have some yeast and bacteria in our intestines. It's hard to know what to do if we can't isolate a particular pathogen. … No - I have no idea where the butyric acid comes from, but I don't think it could cause all the behavioral symptoms you describe. Probably nothing to worry about. … I suppose you could try a probiotic."
Well that was helpful. NOT! Looks like I'm on my own.
We cut back on carbs, holding at about 80 per day, and after two weeks, two long weeks, John improved, and can function in school again. He's been staying in school ever since, but his disorder is not gone, not by a long shot. It's just a little easier to manage.
So it's a bacterial colony. That's bad news, because I can't buy an antibacterial supplement over the counter. I have to get a prescription, and all the doctors and specialists think I'm nuts. Well it's not clear that an antibiotic would help in any case, it didn't before. Other than cutting back on carbs, and perhaps nondigestible sugars, it's just not clear how to proceed.
My daughter developed an aggressive form of strep, and it's not unusual - not unprecedented - to treat all the siblings with an antibiotic. We select one that will kill strep, yes, but is also effective against intestinal bacteria. And this time we run the full seven days. Are you ready? Drumroll please. Nothing. Sure, it cleared up Beth's strep, but it had no effect, good or bad, on John. So the inconsistencies continue.
John's symptoms exhibit a huge variance - they respond to food in longterm patterns - there is no metabolic disorder - his blood contains nonhuman chemicals - the food carb correlation is undeniable - it has no response to antifungals or antibiotics. What does that leave? Here's another idea - worms.
If you live in Michigan you know Randy Tent. Even if you're not in Michigan you may have heard of him. He's the greatest naturopath in the world, and if you're not sure, just ask him. That's all right; why should doctors have a monopoly on ego? We take John to see him, and he diagnoses a calcium deficiency and worms. But he doesn't sit still long enough to explain what he means by worms. He hands me an expensive supplement and dashes out of the room. He dashes in later to evade some of my questions in a manner that would make a politician proud, then he dances out again. The man has serious ADHD, yet we're bringing John in for treatment for ADHD. Oh well, we're desperate. So what does he mean by worms? Surely any macroscopic parasite would have been seen in all the stool samples we've taken over the years.
I read the label on the box of pills that he sold me, and everything ends in ase. It's a broad spectrum enzyme supplement. It won't do any harm, but it won't kill any worms either. I discount his diagnosis and move on. But I wonder … are there patients who do not completely digest their food, whence the undigested nutrients feed an unwelcome microbial colony, which produces an array of unexplainable symptoms; then the patient takes Randy's supplement and starts to improve, having no idea why. I wonder if this happens, because a lot of people around here sing his praises. A lot of patients have gotten nowhere with modern medicine, and flock to him. Might he be right at times, quite by accident? I wonder. Enzyme underproduction, leading to undigested nutrients, leading to an opportunistic infection, is certainly a cascade we have considered before, and not implausible.
At the same time I receive email from one of my loyal readers, suggesting a protozoan. If it wasn't one of the well known strains like giardia it could go unnoticed, and would be resistant to all the treatments we've endured thus far. Have a look at this website, and this one. The latter suggests that protozoa actually eat, and thrive on, the good bacteria in probiotics, hence probiotics can make the patient worse. You need to grow your own good bacteria. You can't call for reenforcements. And the only way to grow your own good guys is fiber. I keep coming back to fiber. It saved my wife's life, and if I can get the formula right it could help my son as well.
Of course we've tried high fiber diets before. With my wife's history, fiber is one of the first things I tried. But there are subtle differences between individuals. My wife didn't mind the oligosaccharides that are present in most high fiber foods; but my son can't tolerate them. In other words, his pathogenic microbes thrive on the complex sugars present in legumes and leafy vegetables. Perhaps this was not the case with the bacteria that colonized my wife. Each microorganism is different, and the treatment varies accordingly. We need to look to whole grains for our fiber, setting most legumes and vegetables aside. I put John on a low sugar, low oligo, whole grain, high fiber diet. It seems to be helping, but I've said those words before, so time will tell.
Speaking of chairs, at this point I must pull out my chair and whip and beat back the psychologists in the crowd. "Back, back! It's not psychological. It's not all in her head. She likes school. don't you guys get it?"
Well they've got a hammer, and everything looks like a nail. I suppose I'm guilty of the same thing. I watch her slog through her illness, and then come out of it about noon, as though she had purged something from her system. She jumps back into school and salvages the second half of her day. Then she comes home happy as a clam and plays with her friend down the street. Now I'm ready to swing my hammer, and I hope I'm not pounding on a screw. "It's something she eats." I declare.
I've written about Beth before, her incessant throat clearing and her frequent ear infections. Have we crossed a threshold? Does the offending agent now cause dizziness and fainting? I don't know, but I think this is more plausible than the default diagnosis of vasovagal syncope, for which there is no clear evidence and no unambiguous test.
Oh the junk she ate on Friday - pizza and McDonalds and the like. And she was fine all weekend. What could she have eaten Sunday that would cause this reaction on Monday morning? I really don't know, so I'm guessing it's corn, because I reacted badly to corn, and she has half my genes, and she had no corn on Friday or Saturday, and a large helping of corn on Sunday. That's not a great rationale, but it will have to do for now. I decide to keep her off corn for a while, and see where it leads.
We go to Florida for our annual vacation, and Beth is fine. She's not dizzy even once, despite the coasters and spinners at Cyprus Gardens. I took corn away and she's fine. It looks like I was right on the mark.
NFF: Her fainting was caused by an infection that lingered for several weeks. Once the infection was gone, she ate corn again and nothing happened. I really do swing my diet hammer at everything. Most of Beth's problems are chronic low level infections that never go away, and most of Mary's problems are induced, or aggravated, by outdoor allergins. And yet food may still play a supporting role. A healthier diet would probably reduce the frequency and severity of their infections and allergies, and all the concomitant symptoms that go along with.
Read the aforementioned article, and you'll see that iron plays a pivotal role. This is something else the SCD folks have understood for decades. Perhaps this is why John reacts to his low sugar, high fiber cereal; it is fortified with iron. I decide to go searching, once again, for the perfect cereal. It has to be low sugar, high fiber, whole grain, no added iron, not too many artificials, and it has to taste good. "Is that all Captain, we have five days you know." [Miri]
I believe the bug that infests my son is a genetic mutant of the natural bacteria that live in your colon and mine. They look the same, and under a microscope a lab tech might say, "Those are the normal bacteria that help you digest your food; you can ignore them." But if you could read their dna you'd find they are not normal. Something is different about them.
See the March 19 2005 issue of Science News. Intestinal bacteria can coat themselves with sugar to evade the immune system. This is normally a good thing. A simbiotic organism, which has been helping us for tens of millions of years, has surely found a way to hide from our immune system. But when that organism mutates in a high sugar environment, and becomes our enemy, we have no way to fight it. You may wonder about antibiotics, and we've tried that twice, but remember that an antibiotic never kills the entire pathogen. It attrits their numbers, and your immune system is suppose to mop up the rest. Taking enough antibiotic to kill every last bug isn't practical. So the mutated gut bacteria simply rebounds after the course is over, along with its cohort in crime, candida. Combine this with the ability to hide in a biofilm, and there seems to be no answer to this problem.
A friend of mine, in a similar situation, is considering a flora transplant, like rebooting Windows after it has gone astray. I need to do some more research on this. It sounds a little extreme, but it may be the only way.
Put your evolutionary hat on and think for a moment. If bacteria are immersed in a high carb environment, created by a western diet, some may develop the ability to harm the intestines in a way that prevents us from digesting starch and complex sugars. The undigested sugars feed the bacteria, and the cycle continues. The bugs have found a way to open the refigerator door. I believe this is the underlying scenario, and once the bacteria mutate and grow, it's hard to starve them out. It makes evolutionary sense, but is it right? I don't know.
The barrier is not a physical structure. I mean, the brain isn't wrapped up in a plastic bag. Instead, the barrier is implemented in the walls of the blood vessels that traverse the brain. They are functionally different from the arteries and veins that nourish the rest of the body. It's an imperfect analogy, but the holes are smaller. The brain is a fragile organ, and it must be protected. Even the lowly fruitfly has a blood brain barrier, though it is structurally different from ours.
Jack Samuels, an expert in glutamate sensitivity, offers a compelling theory. Perhaps John's blood brain barrier is just a bit leaky. It still blocks the macro molecules that would kill a person outright if they entered the brain, but it allows some of the smaller molecules through. These include glutamates, and other impurities found in 20th century food. This genetic variation would have been harmless just a century ago. There has been no evolutionary pressure to oppose it. So we should not be surprised to find that some of our children react, behaviorally, emotionally, or mentally to these novel compounds.
Finally, Jack offers a ray of hope. In some cases children outgrow some of their sensitivities as they enter puberty. Perhaps the blood brain barrier completes its development as we reach adulthood. Continuing our imperfect analogy, perhaps the holes tighten up. I dare not count on this, but it would be wonderful if true! John can look me straight in the nose as he approaches his teenage years. Manhood is just around the corner. We will continue to watch his diet; but someday, if we're lucky, we can lift some of these restrictions.
On his worst days, when the chemicals are finally leaving his system, and he reflects upon his actions and their consequences, he sometimes talks about suicide. He has done so almost since he came to our house at age 6. But the next day he has a positive attitude, and is ready to play with friends or enjoy a family outing. I have never seen a child with more resilience. Naturally we watch him closely while he has his dark thoughts. My brother committed suicide when I was a teenager, so I am aware of the issues and the ramifications, but I also know John's feelings are a natural response to a truly rotten day in a long line of rotten days, and if we can string a few good days together he'll feel better again. An antidepressant may be necessary in the short run, but he also needs me to solve his underlying problem, and soon.
One day, after a bad episode at school and another one at home, John offered his analysis of death.
"Death is peaceful, like closing your eyes, like when you go to sleep. There aren't any angels, or devils. There is no God. It's all a myth. It's just peaceful."
I have been careful to hide my atheism from my children, because I don't think young kids can handle mortality, any more than you would tell a 2-year-old there is no Santa Clause. So he didn't get these thoughts from me. In fact, he and his sisters go to church on Sunday morning, and group on Sunday evening, when John's condition permits. I have allowed others to tell him all about God, and angels, and heaven, without revealing my feelings on the subject. Yet somehow he has figured it out.
NFF: John will become deeply religious around age 21, and thank God, for that is often the only force strong enough to pull someone away from drugs.
John did something at school that was not terribly dangerous, but is nonetheless a suspendable offense. Since you can be suspended now adays for bringing cough drops to school, or having a nail file in your purse, or complimenting your classmate on her pretty hair, this isn't saying a whole lot. And the specifics aren't important in any case. The point is, I knew he was staying home the next day, so why not run an experiment? I gave him some prepackaged potatoes with a few additives, and we basted the chicken in a thin barbecue sauce. I had confidence in the menu. The barbecue sauce only contributes 2 or 3 grams of sucrose. Everything should be fine - but the next morning disaster struck.
By mid morning I had to restrain him, physically. He has already thrown his metal die-cast car against the wall, shattering it into pieces. Wendy takes the laptop and all other valuables out of his room, then retreats into her bedroom to cry. This scene is all to familiar in our house. I would cry too, but I don't have time. I have to keep my wits about me, to control a boy who is almost as big as I am, and I must do it without the benefit of sight. This is not for the faint of heart.
When John settles down on his bed exhausted I review our little experiment and its tragic outcome. Was I wrong? I spent at least 4 of the past 7 years proving his diet is not microscopic. A bite of this or that doesn't matter. Trace amounts of additives don't matter. Even the problem compounds such as sucrose are tolerated in small amounts. He does not have to be on an extreme diet. Now the foundation of my theory is crumbling beneath me. To make matters worse, I can smell the butyric acid on his breath. I haven't smelled that in over a year, since we cut back on sugar/carbs. Where do we go from here?
John says he has to go to the bathroom, so I carefully escort him out of his room and across the hall. After he is done he goes over to the sink to wash his hands, and the mirror sends him into overdrive. He grabs the liquid soap and is about to spread it all over the room. I snatch it away from him just in time, and drag him out of the bathroom and back into his bedroom. Now he is frantic. With escalating OCD, he insists on washing his hands. "I'm diwty!" he declares, without the r. I tell him that he cannot go back into the bathroom with that giant mirror, nor can I leave him alone long enough to cover it. "Now if you had a blindfold," I suggest, "like the ostriches." He knows exactly what I am talking about. Last week we watched an episode of Dirty Jobs, where Mike was loading ostriges into a truck for transport. You must first blindfold these birds, or they will panic, and you'll be kicked by a frightened, 400 pound beast. This is a common theme throughout the animal kingdom. If they can't see what's happening, they are much calmer. He pulls a shirt off the floor and wraps it around his eyes. This quiets his emotions almost immediately. Now why didn't I think of this years ago? We go back across the hall and he washes his hands without incident. Then we go back to the bedroom, with John still blindfolded and in a much quieter state of mind. Suddenly he confides in me.
"I snuck something last night, something big."
"Thank God!" I almost blurt it out loud, in pure jubilation. My theory is intact. Seven years of hard work have not been flushed down the drain.
After some investigation we determine that John ate approximately 60 grams of sucrose while nobody was watching, just before he went to bed. This was a hold-over from Halloween. I didn't even know it was in the house. I thought we through out all the candy, but John found it in the back of the kitchen cupboard. This underscores the importance of never punishing a child for sneaking. I needed this information. His honesty is critical in our ongoing investigation. Without good information, we're lost. In fact, most of the inconsistencies throughout the past five years are probably due to his covert noncompliance. I write everything down, and look for patterns, and even attempt to run controlled experiments, year after year; but I'm missing half the data. I've probably been hitting my head against a brick wall, over and over again, and taking my wife along for the ride, all for naught.
There is a program nearby that is called Max. This is an acronym; I don't remember for what. I did some research, and Max has indeed helped many kids in middle school and high school. It concentrates on behavior modification and anger management, while providing traditional academics. John's teachers want to transfer him to Max. If you're still awake after all these pages, then you should be able to predict our response. We declined, politely, but emphatically. We can implement behavior mod as well as anybody, and it doesn't work. A stricter variant will not work either, and it could do harm. For example, they have a time-out room at Max. Ok - they had a time-out room in his elementary school too. When John was placed in the room he banged against the walls and the door, and ripped his shirt, and broke his glasses. Obviously he did not calm down. That did not help anybody. I'll say it again for the hundredth time; his disorder is biochemical, not emotional. Every day he does the best he can. If he's not behaving, he can't behave, and no amount of redirection or counseling is going to change that. End of story.
His teachers and staff think I'm nuts. They think John is acting out, and he can surely be redirected by a professional staff. I am merely mollycoddling a troubled youth. They see him every day, they see his darting eyes, they hear his distorted speech, and they just don't get it.
Although his teachers are clueless, they are kind and caring, and they have done a hundred favors for us, and for John. So we decide to give them something in return. We take John to Dr. Ferguson for an independent evaluation. This is not someone we picked out of the phone book - we went to Dr. Ferguson on the school's recommendation. that's fine; I think he'll be impartial. After three visits, here is his diagnosis, somewhat paraphrased.
|John's disorder is primarily biochemical. He is not emotionally impaired in the traditional sense. Obviously he is sad and frustrated, because his life isn't going well, but if the biochemistry were fixed, there would be fewer emotional issues to deal with. You can bring him back to see me if you want an expensive baby sitter.|
I am stunned. This is a bit like an honest auto mechanic. This man could have taken me and my insurance company for a ride, for session after session, but he didn't. Needless to say, I'm impressed. As we left his office for the last time I asked him about the best course of action, given the unpredictability of John's behavior and emotions. How should we handle school, when some days, or hours, are better than others? Here is his response.
|A program like Max, as you describe it, would not help John, and it could do serious, irreparable harm. I wouldn't go there. However, home schooling might be a great option, if you are able to do that.|
Again, this was prior to the K-12 program, so home-schoolers received very little support from qualified teachers. Nor did they receive text books, materials, or lesson plans. We had tried home schooling nonetheless, and it was a disaster. We are his parents, not his teachers, and he no more wants to learn from us than the man in the moon. No amount of reenforcement, positive or negative, would get him through a 20 minute lesson, and it usually culminated in John throwing things, and Wendy back in her bedroom crying. But Dr. Ferguson was on the mark, this probably was our best bet, even if the academic exercise was simply "Get on wikipedia and read an article about something you are interested in, then go out and play." If that's all we could do, it still would have been better than school as it was to unfold over the next 5 years.
Dr. Ferguson, an expert in neuro-psychology, saw in three visits what most people could not see after years of observations. When John isn't in control, he really isn't in control, and when he is in control, he's fine. Sure, you want to fix the underlying biochemistry, but in the meantime, don't put him in a social situation where he's bound to fail.
I took his recommendations back to school, and the teachers are not impressed. This is ironic, since they promoted Dr. Ferguson with high praise. Suddenly they don't like him any more, and they even toss a few disparaging remarks in his direction. It reminds me of Bush firing Lawrence Lindsey, who told him the Iraq war would cost north of 200 billion dollars. That's not what he wanted to hear, so bring in the next advisor. The war actually costs more like a trillion, but what the hell.
Dr. Ferguson's report notwithstanding, John's teachers still want him to go to Max. It's the only tool in their arsenal. Again, these people have done so many favors for us, and made so many accommodations for John, that we agree to visit the Max school. We talk to the principal, and the program is exactly as we expected it to be. I'm sure it helps children with true emotional disorders, or kids who come from difficult homes or troubled backgrounds, but John does not belong here. We leave, 100% sure of our decision, as opposed to 90% going in. And we can tell everyone we gathered all the information before taking the next step. Fair enough.
While we are deciding what to do, John reconfirms the carb hypothesis through yet another experiment in noncompliance. We told the girls many times that they need to hide any candy that they might acquire, from school, from anywhere, in their rooms. Well John is resourceful, and one night he found, and ate, some 60 carbs worth of cookies just before bed. The next day I had to hold him down to keep him from climbing out onto the roof. And when I held him he became so frightened and paranoid that he fought with me as though his life was in danger. I hope he doesn't get much stronger. After it was over it still wasn't over. He kept threatening to call the police and report child abuse. I have no idea what they would do if he actually made the call. This was interspersed with talk of hurting himself. By the next day he was almost back to normal. Until the causal connection is cemented in his mind, compliance will always be an issue. Perhaps the reality of his school telling him, "You're not succeeding here." will help in this regard. So I do indeed appreciate their honesty, because it's the truth, and John needs to hear it. He just can't eat this stuff, and I have a feeling he's been getting it more often than we know. Even if it is not in the house, he rides his bike to the party store, buys treats with his own money, and eats them there. We find the receipts in his pockets. He's smart enough to execute a plan, but not smart enough to ditch the evidence.
So - what's the next step? I bring up home schooling, as suggested by Dr. Ferguson, and John's teachers are appalled. They think they have failed, or they think we couldn't possibly do it well - like an untrained home-owner trying to fix his leaky pipes. There is some truth here; we're not particularly good teachers. But we're smart enough to know when he can and can't work, and when he can't, we send him out for a bike ride. We can offer more flexibility in his schedule and curriculum. Maybe we should try again. John really doesn't like the idea though; he really wants to be social, even though he can't. I don't know what to do.
A few days ago John came to me and said, "I love you more than the sky can tell." My "normal" teenage daughters haven't said I love you in years. When John's brain is well, his love fills the heavens. That's why we do it. However, we still have to keep ourselves safe, and that is becoming a concern, as you will see below.
The fact that John is high as a kite from last night's candy doesn't help. He runs at us, trying to push us out of his room, and I can smell the chemicals on his breath. He is filling the air with short chain metabolites. For the next five hours we clean his room, and toss food into the waste basket, and fight with him, while Beth cries and Mary hides in her room. John has no capacity for rational thought. There is nothing in his head except emotions: fear, paranoia, rage, and depression.
There is a silver lining to this huge black cloud. My formula is right; it has been right all along. Years of work have not been in vein. I didn't feed him the wrong foods yesterday, and I haven't fed him the wrong foods for months. I will stop doubting myself and my approach. He can be cured, if he is willing. John needs to sign on to my program, and reclaim his life.
I have two close friends who attend AA meetings regularly; I'm wondering if John can tag along. After 13 years of near constant exposure, his brain may be addicted to the chemicals that the bacteria produce, as surely as someone is addicted to ethanol. I don't know how AA would feel about it, but I think there are many similarities.
Unfortunately this addiction foreshadows his future dependence on heroin and cocaine. He has already learned, at a young age, how to hide, and sneak, and lie, and steal, to keep his addiction going. This tunnel is going to get much darker before it gets brighter.
We could never see this pattern before, because he always snuck sugary treats late at night. He was going to have a bad day no matter what we did. We cleared his bedroom of all sugary treats, as described above, and that put his illicit snacking on hiatus, at least for a few weeks, until he puts a new stash together, as he surely will. Meantime, I think I see a pattern: Ten or twenty carbs at 9:30 is bad, and 30 carbs at 8:00 is bad, and 50 carbs at 6:00 is bad. He really shouldn't have any carbs after 7 - that is the new protocol. But 7 isn't an absolute cut-off either. One day he had almost 90 carbs at 5, and the next day was bad. I am gradually constructing a carbs verses time graph that is continuous, but nonlinear, with an inflection point at 6 o'clock.
This makes sense if you think about it. Digestion comes to a virtual standstill when we sleep, but the bacteria never sleep. The carbs just sit there and ferment until morning. Then, after breakfast, the byproducts pass through his colon and into his blood stream, and out of his lungs, where we can smell them, and into his brain, where they create insanity. I should have thought of this before - but hey, nobody else did either. Atkins, South Beach, Anticandida, SCD, Failsafe, Zone, Macrobiotic - I've read all the books, and nobody suggests a temporal correlation of this magnitude. Yes, the Zone talks about evenly spaced meals in time, but they would be shocked at my prescription - a complete lack of carbs and all the protein you want from 7PM to 8AM. Other diets don't address the issue of time or the diurnal cycle at all. So this is new. If you are battling a microbial parasite that thrives on carbs, you might try this approach: eat about 100 carbs throughout the day, but none in the evening, and absolutely none before bed, which is when most of us crave sweet desserts. It's a different kind of experiment. Whatever you do, include the time of day in your food diaries.
Since it has been a couple months, I can look back and laugh at an incident that was frightening at the time, and a bit revealing. We had battled, physically, for two hours, and John was still cursing at us, using his newfound adult vocabulary. "You f**king b**ches, you're just n*gg*r-hating racist pigs. I'm going to call the police and report you for abuse. I'd rather live anywhere than here with you fat smelly ugly fags." And on and on. In need of a break, Wendy went upstairs. Surprised by this reaction, John shouted after her, "Hey, where are you going? Don't you know that I love you?" It was so incongruous, Wendy had to laugh through her tears. "No - I didn't know. I must have missed the memo." But he does love us, desperately, and that's the incredible thing. For a moment he was able to step outside of his chemicals long enough to tell us so.
On another bad day, Wendy got in the car and left. I gave her the nod - she needed to get away, and I could handle John for a while. She was just going to drive around for an hour, to nowhere in particular. While she was gone, John ran out into the garage and found a can of spray paint. I could hear him shaking up the can with its marble inside. I thought he was planning some new and interesting form of vandalism, perhaps "F**k you!" across our brand new, $5,000 aluminum siding. If that is his intention, I won't be able to stop him. But no, the demons are in retreat, and he has something else in mind. "Dad, I'm going to paint Sorry Mom in big white letters on the front lawn. When she comes home, the first thing she'll see is Sorry Mom. I think that will make her feel better." I try to explain to him that painting the grass is probably not a good idea. It's not ecologically sound. Maybe we can think of something else. John finds a flat of flowers, and decides to plant them around the mailbox. This is more than a simple apology. He is trying to set something right - something that has been bothering him for the past three years. He's remembering Mother's Day of 2003, when he tore the flowers out of this very location. Now he's putting them back. "Sorry Mom - don't you know that I love you?"
How did our unintentional experiment turn out? During the month of June, he turned into a monster. It took me a while to put it all together, because the transformation was gradual, and there are still 100 other variables that vie for my attention. Were we giving him too many carbs at the wrong time? Was he sneaking again?
Finally I realized that a class of symptoms was gone. I never smelled anything on his breath, and he didn't act drunk, or afraid, or paranoid. He was just angry, terribly angry, at every little thing. How could five symptoms improve, while two grew worse with each passing day? The increase in nutrasweet was the only thing I could think of. The carb schedule was weakening the infection, and reducing the associated symptoms, but John was having a specific neurological reaction to nutrasweet. I took him off all fake sugars, and he improved over a couple of weeks. I asked him if he felt any better.
"It feels the same. I don't think it makes any difference. Can I have a diet soda now?" But two days later he came to me with a revised assessment. "I think the nutrasweet was really messing me up. I feel much better now. I promise not to eat nutrasweet again."
Of course the cabinet does not keep John away from his fix; it just makes it a little harder for him to score. He still walks down to the party store and buys cookies and candy. If he has no ready cash, he collects returnable cans and bottles along the way. It doesn't take much to buy a chocolate bar. An addict always finds a way. Since he is almost as strong as an adult, we can't really keep him locked in the house, so he will do what he chooses to do. But at least we aren't leaving the illicit items sitting out on the counter any more. We have done our part, and now he will have to do his.
NFF: After several years, I have decided to describe, in this blog, the events that led up to the acquisition of the two drawer filing cabinet. The day before was a Sunday, and Sundays are always horrible, I don't know why. We have learned to dread Sundays. That puts the kibosh on Mothers Day, Fathers Day, Easter, or even a nice Sunday afternoon in the park. Well even by Sunday standards it was a bad day. John fought with us, verbally and physically, for most of the morning and into the afternoon. Exhausted, Wendy went up to her room to recover, and perhaps to cry, which would not be unusual. Showing great maturity, Beth wanted to help. Typically she would run down the street to play with her friend Rachel, and I don't blame her, not one little bit. She didn't adopt these kids; it's not her job to manage them. Beth needs to hold on to some semblance of a normal, healthy childhood. But today she saw her mother in distress and she wanted to help. So she decided to cook spaghetti dinner, something we all love. I cut up tomatoes and peppers and onions for the sauce, as I always do, and Beth started cooking the sausage. I put all the vegetables in a pot and placed it on the stove next to the sausage, and John ran into the kitchen, shouting obscenities about something. Beth asked him to tone it down, trying to build a peaceful atmosphere for the evening meal. John waved his arms at her and made some kind of threat. I stood between them, something I have done all too often, though I am usually protecting Wendy, not Beth. John usually leaves his sisters alone. Beth wisely backed away and went into the diningroom to set the table. She is looking for nice dishes and candles; she wants to make everything right for her Mom. At this point I am not touching John, but I have my arms outstretched, trying to keep him in the kitchen and away from Beth. Suddenly he grabs the knife off the counter, the one I was using to cut vegetables, and holds it up against my neck. How did the hijackers kill the flight crew on 9/11, using blades that were only one centimeter long? By cutting the carotid artery. You're unconscious in just a few seconds, and dead in less than a minute. John knows nothing of this, he has no understanding of anatomy, and yet by sheer luck he has found the sweet spot. I could be dead on the floor in a widening pool of blood in a moment. Beth is in the diningroom with her back turned, and doesn't see any of this. Wendy is still upstairs. I've never put John on the ground before, never harmed him physically, but now is the time. My life depends on it, and I'm still strong enough to do it. I prepare for a lightning strike; I'll knock the knife out of his hand and disable him in one quick movement, then call 911 before he can recover. Suddenly he pulls the knife away. I think he is in shock at what almost happened. He can hardly believe it himself, and he doesn't know what to do. In a flash his mind creates a new scenario out of thin air. It didn't happen this way, it happened that way. He's very good at this form of mental redirection, frighteningly so. In his mind he wasn't trying to harm me, or even threaten me. It never happened. He picked up the knife to chop up an empty egg cartonthat is sitting on the counter. As if in confirmation, he whips around and chops the carton into little pieces with several loud whacks. Beth hears the sounds and comes running back into the kitchen, quite concerned. "It's just an old egg carton." I declare, trying to reassure her. After a moment she decides everything is ok, and goes back into the diningroom to finish setting the table. John leaves the kitchen and stays in the livingroom until dinner is ready. An hour later we are all eating together, with candles on the table, as though nothing had happened. It is quite surreal.
There is no denying it any more. We are all in danger, all of us, and John has to go. Wendy would certainly agree, if she knew what had happened. And it's not a terrible idea in any case. Later on in this blog I will write about the second home, wherein some of these kids do better in their second adoptive placement. A disruption is not the end of the world. But I didn't know anything about this at the time. I was still in the straighjacket of "This is your forever family." So I came up with an alternative, one last chance for John, one last chance to keep us together. The locked two drawer filing cabinet would hold all things carb. Was this the right path? Would things have gone better if we had put John back into the system? We'll never know.
There is something else that I did not realize for almost a year. After a couple of months John figured out how to break into the cabinet using a pair of scissors. Once again he was sneaking treats in the middle of the night. An addict always finds a way. I knew something was amiss when I found the cabinet unlocked in the morning, and I had the only key. He forgot to lock it back up, or perhaps he couldn't do that with his scissors. He finally showed me how he did it several years later, and we gave the cabinet to a friend. It wasn't serving any useful purpose in our house.
As you can see, there are things that happen in our home that I just don't write about, horrible things, things that are just too painful for words. If I described every episode, every fight, every altercation, every abbreviated school day, every discouraging parent teacher conference, it would just be too much to bear.
"Perhaps we can eat natural carbs, like fruit."
The microbe doesn't care if the sugar molecule came from an orange or a candy bar.
"Perhaps we can eat simple carbs, i.e. the simple carbohydrate diet."
Starch is quickly converted into simple sugars, so it's hard to see how this could help.
"Perhaps we can eat failsafe carbs: rice and potatoes and maple syrup."
These are probably the worst.
"Perhaps she has a specific sensitivity to cane sugar, or wheat, or gluten. We can stil eat homemade gluten free cupcakes sweetened with apple sauce."
Possible, but not likely.
"Perhaps we can eat carbs free of fructose."
Fructose intolerance is very rare, and usually makes the child deathly ill as an infant. Other metabolic disorders are unlikely for the same reason.
If you've been chasing your tail for years, and you feel your child's symptoms are food related, there is probably a microbe involved. The three most important factors in winning this war are: the quantity of carbs consumed, the time of day the carbs are consumed, and the quantity of carbs consumed. When the microbe goes into remission, (I don't know if it ever really goes away), you might find there are no other contributing factors. Aside from the carbs, my son might react to MSG, or maybe nothing at all. And you know how many variables we have looked at.
If you fit any of the patterns described in this journal, please save yourself years of heart-ache and start counting carbs now. This is the first piece of the puzzle. When the random fluctuations of the microbial colony are gone, other sensitivities, if any, are easily determined. Experiments become repeatable, and science is on your side. You just have to accept the reality of meat and vegetable stir fries for dinner, without potatoes, without rice, without a dinner roll, and without a sweet dessert. If you're looking for numbers, we try to keep dinner + dessert to 50 carbs, but your mileage may vary. Breakfast and lunch are comparable, though there is more wiggle room here.
"Wait a minute." I hear you cry. "We ran stool samples, and many other tests, and there is no sign of a pathogen. There are no digestive symptoms, and no strange smells. I don't think we need to spend time chasing the carb/pathogen theory. I can't afford another year of work leading to a dead end."
I understand. Remember, my son had no supporting lab tests either, until we found the organic acids in his blood, and that was several years into our investigations. I suggest you run a three day test. That's all - you'll have your answer in three days, maybe less. Again, and as always, please consult your doctor first. This blog is for educational purposes only.
Buy a bunch of sweet potatoes or yams, whichever your store provides. Both stand alone in their food groups. They are not related to the white potato, sugar, wheat, corn, soy, or anything else. They are also natural, without additives or preservatives. Your child is unlikely to react to this specific food, which happens to be high in carbohydrates. (If you're trying to be failsafe, use maple syrup; if you're trying to be scd, use grapejuice.) Have your child eat a bunch of yams for dinner, maybe two or three nights in a row, and see what happens. I'll bet most of her symptoms get worse, maybe a lot worse. You might even smell byproducts on her breath, perhaps for the first time. If not, carbs are not an issue. If yes, you have a microbial imbalance, no matter what medical tests might indicate. Do your best to keep a lid on carbs, although compliance is always an issue, and I have no answer for that one.
Unfortunately his OCD disrupts the entire family dynamic. He is virtually unable to do his chores for fear of contamination. Since he initially offered no explanation, we assumed it was an expression of defiance, or perhaps laziness. Now we know it is not that simple.
I have my own biases, as do we all, so I naturally assumed his OCD was food related. However, an accidental discovery has all but ruled that out. John and I occasionally spend time at a friend's house, and in that setting his OCD disappears. It reappears as soon as we return home. This suggested a simple experiment. I handed John the tv remote and he said he was afraid to touch the buttons as usual. "If I do, I'll have to wash my hands afterwards." I then took him and the remote outside, and within a matter of minutes he was pressing the buttons with ease. We went back inside and once again he could not touch the remote. I repeated this experiment several times. The yard is safe, the garage is safe, the car, with its new-car volatiles is safe; but the house is not. The transformation is so fast, his pediatrician believes it is entirely psychological. "An air-born agent wouldn't pass through the blood brain barrier that quickly, nor would it dissipate that quickly when leaving the house. He is having a psychological reaction to your home." I am forced to agree; sometimes the psychologist is right. He is literally afraid in his own home. I don't know what to say or what to do.
Wendy picks John up from school and brings him home as usual. John asks if he could go to Gerry's house. Wendy says that is a possibility, after he finishes his homework. John brings his books and papers into the office and Wendy looks at the assignment sheet. She starts to go over the work that was assigned, but John pulls the books and papers away. "No, I don't have to do all that. Listen, here's what I have to do." Wendy asks to see the papers again. Based on past history, she trusts the teacher's report more than John's verbal account. That's what an assignment log is for. They wrestle over the papers for a minute, then John hits Wendy in the back with a book, runs out of the office, and slams the door so hard that the molding comes off the wall. He then stomps upstairs, swearing at us all the while. "You can kiss my ass. You're just a bitch. You're always beating on me." This is a recurring theme. He and Mary both threatne to call protective services regularly, because we are such horrible abusive parents. He comes back down and stomps around the house. Mary says something from the family room, which I cannot hear, but it probably has something to do with Gerry, whom Mary really doesn't like. This puts John over the edge. He runs into the family room and screams at Mary. "I've put up with your crap for 17 days, and I'm sick of it. You insult me all the time, and you're just a piece of shit." This is the first time he has directed his rage at Mary, and being only 15 and untrained, she doesn't know how to respond. So she simply insults him back. They trade insults until John's insults escalate to threats. I have to stand between them and move John physically out of the family room. Mary, nursing a broken toe, makes no advances toward John. She stays seated in the family room. The verbal exchanges continue while they are in ear shot of each other. Wendy tells John that he cannot go to Gerry's today, because of the way he treated his sister, and because he is out of control. Now John is even more upset. "You have ruined my weekend. You are totally unfair. Mary insults me, and is nasty to me, and I have to lose my weekend." He kicks over chairs and tables and waste baskets. He kicks the front door with hard cowboy boots. Fortunately the door holds. He then turns to a nearby box - a fragile package that arrived that morning. He kicks several holes in the box, without knowing or caring about the contents. He runs back to the kitchen and kicks a hole in the wall, approximately a foot in diameter. This will cost several hundred dollars to repair. He is about to run back into the family room and confront Mary again, but Wendy stands in the way. He hits Wendy several times, striking her arms as she holds them up to defend herself. Over the next couple days these blows develop into large bruises. He runs outside, grabbing a photograph on his way and tearing it up. Then he runs around to the garage. He is cussing and screaming at us. We were afraid he would damage our car, as he had done a week earlier with the rental. Wendy goes out to the garage and tells him to leave the car alone. He kicks the garbage can and recycle bin, and moves toward the car. Then he runs towards Wendy with something in his hand, perhaps a shovel. She does not have time to identify the object, but given his mental state, she fears for her safety. She kicks his leg, hoping he will back off, and he does. He comes forward again but stops short of Wendy's kicking distance. He backs off again when I hold the phone in my hand and threatened to call the police. John leaves the garage and comes back in through the front door. He goes into the living room and sits on the couch, stomping his feet on the floor as hard as he can. This causes glass objects on the end table across the room to bounce and rattle. He swears and insults us for another fifteen minutes. Eventually he quiets down, and the episode is over. Once again he is paranoid and delusional. He believes, to this day, that Wendy hit him first, then kicked him, and if he ever hit her it was later, in self defense. And he believes Mary caused all the trouble between him and her, and that he was robbed of a fun weekend at Gerry's because of her. This is what he would tell the police if we had called. Of course the police would have dragged him off to jail or an institution.
John wakes up an absolute monster - worse than he's been in months. He probably snuck sugar last night, but won't admit it. I have to be with Wendy throughout the entire tirade. I can't break away even for a moment. John is on the edge of violence for three hours. The slightest misstep on our part could push him over the edge, which would push us over the edge - and somebody would wind up in jail. He calls Wendy a whore, who works her prostitutional magic on the nearby streetcorner, and an ungly fat bitch, and a racist nigger, and so on, for hours. We dare not respond, else his words will explode into something much bigger. All Wendy can do is cry, which evokes yet more venom from our demon-possessed child. "Wah wah. You gonna cry now? Are you some kind of baby? Do I need to change your diapers?" There's nothing we can do except get through this as safely as we can. Don't say anything, whatever you say will cause an escalation, so don't say anything. To misquote Harlan Ellison, "I have a mouth, and I must not scream."
As April turned into May, John grew worse each week. We had to pick him up from school once a week, then twice a week, then almost every day. The recurring nightmare had returned. His principal was ready to send him back to the Max program, but she literally ran out of time as the school year came to an end. For want of paperwork, John narrowly escaped a return to Alcatraz. But this is merely a reprieve, isn't it? This child, who can't make it through a day of middle school, is scheduled to attend high school, with fewer support services and zero tolerance for bad behavior. Are we having fun yet?
To our surprise, the principal suggests an aid, something we have requested since elementary school. He finds the money in the budget somewhere, bless his heart, and John has an aid who can redirect his behavior, and help him academically. They also have the option of working in the library, if the classroom is too distracting for John, or if John's nonstop rambling is too distracting for the class. Thank God for an understanding principal. But it's probably for naught. John still gets in late at least twice a week, and comes home early almost every day.
Around mid October, I was stupid enough to fall into the same trap. I found yet another book that distinguishes between good carbs and bad carbs, and yes, you can eat all the good carbs you want, if you avoid the bad carbs. No kidding - I stepped into it again. Sometimes I'm as dumb as a stump. Fool me once, shame on you; fool me 167 times, shame on me. That messed him up, through no fault of his own, and he effectively missed several weeks of school. Sometimes he was there, but he still didn't get anything done. When I finally put that book on the shelf, and return to the basics of counting carbs, things should have improved, but they didn't, mostly due to his noncompliance. He eats fries and breads at lunch, and cookies from other kids, and more carbs at night after we are asleep. We still lock up the sugary treats, but we can't lock up every source of starch. Last night he took oatmeal out of the pantry and cooked a bowl for himself - an extra 45 carbs at the end of the day. Then there's toast, and leftover macaroni that the girls didn't finish, and so on.
I started doing something I should have done years ago. I post, on the fridge, everything he eats and their carb counts. It's not abstract any more. He can see his subtotals, and how much he has left for the day, and, I hope, he will be able to see that high carb counts lead to bad days, and low carb counts lead to good days. Of course it isn't that simple. Sometimes you need five low carb days in a row to recover. And there is noise in the system - other reasons why he might have a bad day. So I'm asking him to see the correlation, and that may be asking a lot of a 15-year-old whose mental faculties are already compromised by the illness we are trying to treat.
His juvinile arthritis has gotten much worse, and that might be a good thing. When he is mentally ill, he doesn't know he is sick. In contrast, when Mary has a headache, and is in bed under the blankets all day, she knows very well that she is sick. She can't live in denial. She can't claim she is stuck in bed because somebody else has a character flaw. If John has a similar symptom that is 100% physical, aggravated by his microbial imbalance, we may finally be able to push him out of denial. But it's harder than you think. "My back hurts because I fell down on the way to the bathroom." Then, three days later, "My back hurts because I fell off my bike." Never underestimate the ability of an addict to justify things. If you have ever been around an alcoholic, you know what I mean. Have you read the study wherein rats prefer sugar to cocaine - even if they were addicted to cocaine at the start of the experiment? No wonder John keeps sneaking, and no wonder I keep looking for another answer. But there is no other answer, and we're going to have to beat this thing the hard way.
We have started doing something else we should have done years ago. We are taking the advice of The Explosive Child to heart. We don't force him to do anything any more. Homework, housework, chores, cleaning up after himself, whatever. We ask once, and if he doesn't do it, we just leave it at that. I can't keep getting into fights, sometimes verbal and sometimes physical, over this crap; and I can't keep exposing my daughters to this chaos. They never want to have a friend over in case there is a blow-up, and I don't blame them. That's no way to Live. John may reach adulthood without knowing how to do laundry or load a dishwasher, but I'll still have my sanity. He can learn these skills on his own when he's 18.
For an outsider's perspective, let's see what school has to say. "He is doing much better." reports the social worker. "He's still failing 4 out of 6 classes, but he doesn't refer to his teachers as stupid whores, and he's not calling his aid a f**king bitch any more." It sounds like a little thing, but it's huge. Here at home, he will do about a third of the things we ask, if we don't push it. He use to do nothing we asked. So really, we've made progress since last I wrote.
What have we changed? The only thing I can think of is my strict adherence to water. "Drink nothing but water." I insisted. "Maybe some unsweetened tea, and carbonated water with lemon, but that's it. If it tastes sweet, don't drink it." This happens to be my number 1 recommendation in the introduction, and I finally decided to take my own advice.
It's interesting to review all the diets we have tried. Everyone of them allows some kind of special drink. Feingold = Coke, SCD = grape juice, failsafe = pear juice, low carb = diet Coke, and on and on. John drank whatever was permitted, and he drank it by the liter. This makes no evolutionary sense. We've been drinking water, exclusively, for the past million years. Even if you are "normal", drinking your calories, as much as 25% of your calories, is not a good idea. Your stomach does not recognize it as food, and does not register it in the budget. Food makes you full, but you can drink sugar all day long. And what do your intestines do with these drinks? Who knows? Since it is such a novel substance, and since the gut flora is so delicately balanced, the ramifications are hard to predict, and will certainly vary from one individual to the next. In any case, my #1 recommendation to anyone, anywhere, is to drink water. If you need more fruits and vegetables in your diet, eat fruits and vegetables. Don't buy one of those juicers and drink your veggies. The salesman will tell you it's better than having no vegetables in your diet at all, and he might be right, but for some folks he might be terribly wrong. John is on water and tea only, and he is finally improving.
Beyond this, I'm not watching his carbs like I use to. I still keep sugary treats locked away in the cabinet, but if he goes for a second bowl of spaghetti, I don't worry about it too much, and it doesn't seem to affect him the next day. His improved behavior, plus our relaxed attitude towards his diet, plus our lowered expectations, plus Wendy's antidepressants, combine to make our home a much more pleasant place. The girls can see it, and they are having friends over more often.
One might wonder why we aren't dancing in the streets. So long we have waited, and so much we have endured, and it looks like some light at the end of the tunnel. We aren't dancing because we have seen this light before, and it has sometimes been the oncoming train. We've been fooled before, and now we are cautious. Beyond this, Mary has thrown us a curve, high and way outside. This has kept us far to busy to worry about John. "What's up with Mary?" you might ask. It's not dietary, and it's not life threatening, but it is life changing. If I think it is relevant, and I get her permission, I'll write about it. Meantime, on we go.
As you can see, we haven't had a lot of time to worry about John and his disorder. He managed to pass two classes this semester, one with a D-. But the teachers were pretty up-beat at our last IEP. "I know he's struggling academically, but he doesn't call us f**king bitches any more. He really has come a long way." Ok, I guess that's something. We mostly stay out of his way, and don't ask him to do anything, because we can't manage John's oppositional defiance and Mary's issues simultaneously. As our therapist says, "Sometimes you have to pick your battles."
NFF: The key here is that we let Mary drive; in fact we encouraged her to drive. We paid for drivers ed, and a license, and insurance, and partial use of our car; and she went off somewhere and got pregnant with someone she hardly knew. And she's going to get pregnant again, and again, and again, all before age 21. Then she's going to share an apartment that she can't afford, with a somewhat abusive man whose entire income goes towards his legal expenses. All because she left the nest at age 16, with the emotions of a 12-year-old. The previous pages of this blog were primarily devoted to biochemical disorders, but much of what follows will be a consequence of immature children out on their own, trying to make adult decisions that are beyond their capacity. If your child isn't on the honor roll in school, or hasn't proven his maturity in some other way, don't let him drive.
Indeed, we all go through two weeks of hell as Mary steers her ship toward that very island. She thrashes about like a fish out of water, desperately trying to find a way to raise this child, and never mind about Martha and Jan. Mary is in such pain, such longing, that she will do anything to ease her depression. The weekly visits help for a while, but then when Karen leaves the pain is worse. Mary says she can go to school from 7 to 3, and work from 3 to 9 to pay for Karen's expenses, and do homework from 9 to 11, and somehow get enough sleep, with a newborn baby in her room, to get up the next day and start all over again. Her friends' parents will watch Karen from 7 AM to 9 PM, 5 days a week, for free. "I can make this work. I can raise my baby. All you have to do is pay my expenses, which you're already doing." Anyone reading this can see how ridiculous this plan is. The free babysitting services will evaporate within a few weeks, if they exist at all, and Mary can barely get up for school as it is, without 6 hours of minimum wage work in the evening and a crying baby at night. And she's not an honor roll student; she would never pass her classes under this schedule. The plan is so absurd, I really have to bite my tongue and tread carefully. fortunately, something brings Mary back around to reality, and she decides once again to proceed with the adoption and return to her station in life as a high school student, which is where she needs to be right now. We all heave a sigh of relief, especially Martha and Jan, who have already bonded with this beautiful baby.
Most of us rarely get to see a selfless act in person. On October 10, in a small court room, I watched my daughter take an oath, and sign a form, thus giving her baby away, permanently, to someone else. A million years of evolution was pushed aside by intelligence. It was amazing, and a bit inspiring. Needless to say we are very proud.
And yet, there is something surreal about the whole experience. She still leaves dishes in the family room, and she still thinks her high school friend, who just got out of juvie, knows much more about life than we do. She acts like a quantum particle without a definite state. Sometimes she is a wise adult, and sometimes she returns to, in the words of the Who, "teenage wasteland".
She visits Karen and the adoptive parents on Saturday, the day after the hearing, and I think that helps her a lot. Martha and Jan are willing, even eager, to include her in their new family, even after she signed the form, even after they have no compelling reason to do so. They said they would, and they will. They wrote in their profile, before they ever met Mary, that they wanted the birth mom to be a part of the child's life, and a part of their lives. They wanted regular visits and a close relationship. Perhaps another couple would have tolerated such openness, grudgingly, for a short time, before going back to pictures once a year, but this couple really wants their baby to have a third mom. I told Mary, back in March, that she could find people like this on the east coast, or the west coast, but it would be difficult to find a couple with this mindset here in Michigan. Well here they are, and I don't know if Mary would have been willing to place her baby with anyone else.
I want to reward Mary for her courage, so I take her to Olive Garden. It's been a week since her gall bladder surgery, and she is just about back to normal. "Cheese!" she declares, as she orders chicken alfredo. "Real cheese - not that low fat stuff." She is in heaven. I want to share in her joy, but my thoughts are consumed with worry, the most insidious of all emotions. I really can't afford to take my family out to a nice restaurant, with my paychecks coming to an end, and my IRA down by 50%, and my house down by 30%. I'm so glad the "fundamentals of our economy are sound." God help us if we are stupid enough to vote republican for a third term, especially when we have such an intelligent and inspiring candidate on the other side of the ballot. But you never know how uninformed Americans, who get their information from TV sound bites, are going to vote. Sarah Palin, a heartbeat away from nuclear weapons - that should frighten any sane man.
Where is John in all this? Not well. He started out strong, going to school every day, and actually doing the work in at least some of his classes. But he's lost interest, and like last year, he only goes to school when he feels like it. That is not a recipe for success. At home he seems bolder than ever. He swears all day long, and is utterly disrespectful and defiant. I don't think this is a food reaction, I think he is worried about Mary and all she is going through, and he's tired of school, and of life, which seems to offer him nothing. I think he should quit school and work for a while. This coming from someone who has two masters degrees. He needs to succeed at something, even if it is a minimum wage job. He needs to earn his own money, and buy some of the things he wants through his own hand. Will he return to high school, or get is GED? Probably. He's smart. But he won't do any of these things if he doesn't succeed at something soon.
A part of me wonders if it was all a bad dream. Maybe he never had a biochemical disorder at all. Maybe his brain was badly miswired, and he simply grew out of it. That does happen with some ADHD kids. But then I pull out his medical records and look at the blood tests with the abnormal organic acids, acids that can only be made by bacteria. And I remember the smells, and all that we went through. No - he really did have a horrible disorder that brought on violent insanity. Now it is in retreat, but is that because he simply grew out of it, or was our dietary intervention an integral part of his recovery? I don't know, but it's hard to see how he could have improved on a typical western diet.
School is going well for two reasons. His insanity is reduced, as described above, and he has a wonderful full time aid who helps him deal with his emotional issues. I can't say enough about her; she may have saved his life. And don't forget the principal who authorized this expenditure, while a long line of prior schools said they couldn't afford such a thing. How can I ever repay these two wonderful people?
Of course I am speaking in relative terms. John isn't on the honor roll. In fact he's never going to get his high school diploma. He simply can't meet the requirements. But he will get a certificate of completion. Do you know about this program? I didn't, until the principal explained it to me. It means you came, and you did your best, and you definitely learned something. You walk across the stage just like every other graduate, and you can get into most community colleges. This is what John needs to succeed, now and in the future. Thank God for an understanding school. And it's a public school by the way. Sorry all you libertarians out there, but there is no private school that would accept John. There's just no profit in it. Mary would probably have no place to go either. It's easy to be politically stupid and foist your extreme views on the rest of us when you have a Brady Bunch life.
Meantime we have five police cases open. Three of them are crimes committed against my kids, and the other two are misunderstandings that are related to these crimes. In the interest of privacy, I will not go into details. It looks like they are all drawing to a close, thankfully, and one of the perpetrators is going to jail for a year, plus two years probation. That's something I guess. But it's really been a horrible 2008, and 2009 isn't looking much better. All this casts a dark shadow over the joy we should be feeling as our children grow and mature.
If you plot insanity verses time, it's a typical bell curve, and that usually means a food reaction. So I'm back reading labels again, something I haven't done in a while. Indeed, there is something John started eating on Friday, something he has never eaten before in his entire life. We inadvertently purchased ultra-pasturized milk. Was this the culprit? I don't know, but I'm not going to give him any more any time soon.
this experience is unsettling to say the least. We thought we were done with this. We thought the majority of the nightmare was over. If it returns, then John will have to go somewhere, I don't know where. He's just too big and too strong. Let's hope it was an anomaly.
Last May it happened again, on the right side. The infection was centered beneath #30, but it spread through all three molars below and started to climb the ear canal. I delayed, yes delayed, for a week or so. Why? Because my wife had gone through tmj a few months earlier, and that was the most recent thing in my head. I wasn't thinking four years earlier. So I babied that side of my mouth like it was tmj, but it didn't get any better. Finally I stood up and said, "I need an antibiotic." I went to the dentist, and she took an xray, and saw nothing. I'll say it again; she saw nothing, just like four years ago. Based solely on my descriptions and symptomology, she agreed that an antibiotic was a reasonable course of action, especially since I do not overuse them. My last course was 36 years ago. So I started an antibiotic, and in 4 days I could eat again. I was no longer in agony, and all the teeth were back in place accept for #30, which was still a millimeter high and a bit loose and spongy to the touch. I finished the ten days, and things felt much better, but not completely well. A month later #30 started to ache again, so we took another xray, and this time she saw a tiny infection between the two roots. Another course of antibiotics cleared this up, and I felt pretty good for several months.
In December, #30 was really aching again, so I decided to try one more course. After ten days, now into January, #30 felt better than it had in a year. I could chew steak with it, no problem. I went in for another xray and the infection was massive. It had moved down to the base of the roots, rather than up between the roots. Sure enough, if I pushed on it from the side, I could feel the infection. It didn't really hurt, it just felt swollen and soft. Two dentists and an entodontist said a root canal was my only hope, and even that was 50/50. Being unemployed, I couldn't come up with a thousand dollars for a 50/50 outcome, so I had the tooth out. And it looked perfect. No cracks, no fractures, rock solid. "There's probably a crack at the microscopic level." explained my dentist. Perhaps - or perhaps she's trying to justify what we just did.
In December, when #30 was flaring up for the last time, my wife got some kind of jaw infection. She described it to me. "It's mostly one tooth, but the teeth around it ache too. They are raised up, out of place, and they feel a bit loose, or soft. They also hurt like hell, especially if I put any pressure on them." I stood up and gave her my own advice. "You need an antibiotic." But this time we didn't dawdle. This time we weren't too late. These soft tissue infections are very deep, and one course did not irradicate the bacteria completely. A patch placed directly on the gum would probably work better. She took a second course, and that did the trick. Her teeth are back to normal and she didn't lose any, the way I did. She has learned from my mistakes.
The timing is interesting, isn't it? She's never had anything like this in her 48 year history, and now she contracts a jaw infection just as mine is raging. Obviously I have passed it over to her. Not surprising, since we are intimate, but even with all this contact it isn't easily transmitted. She didn't catch it four years ago, when I had the infection on the left side, and it took her 7 months to catch it this time around. I have no idea how it is transmitted, or how I got it in the first place. But once you get it, you're likely to get it again on the other side. I did, and Wendy did too, as you will see below.
None of the doctors or dentists I have talked to are familiar with these infections. They all think I am grinding my teeth, then the fracture, then the infection, because that is the scenario they know. But I know the infection comes first, and in the case of my second tooth, there was no fracture. Obviously Wendy's tooth was not fractured either, since 20 days on an antibiotic set things right. So there is some kind of jaw infection going around, and it could explain at least some of the 25 million root canals performed annually; along with an untold number of extractions for those who do not want the ordeal or the expense of a root canal. Even if these jaw infections are extremely rare, they could still account for millions of needless extractions and root canals every year.
It is now the end of February, and Wendy has a new jaw infection on the other side. The symptoms are the same, just in a new location. It is concentrated beneath one of her molars, but it's affecting the others as well. Did she fracture that molar too? Of course not. "You need an antibiotic." I declare. A few days later her tooth is better. That's another tooth she would have lost if we did not take prompt action.
If you have symptoms similar to these, run to your dentist, get xrays taken, and listen to what she has to say. But you might also run to your doctor, and explain the situation to him. If you don't have to do anything immediately, try an antibiotic. But be aware; you have to start treatment right away, or the infection will triumph, and you'll lose the tooth eventually, probably within a year. also give warning to your partner, since it can be transmitted through close contact.
Wendy and I can't be the only two people on the planet with these recurring infections. Somehow we need to get the word out, and develop a new mode of treatment.
"You won't even let me try. How do you know if I can succeed or not if you won't let me try. You're ruining my life - crushing my dreams. Beth's taking drivers ed. You love her more than me. In fact you always treat your white birth daughter better than your black adopted kids. You're a terrible parent."
And then it goes down hill from there. I'll spare you the details. So I spend the $250, mostly to avoid the above, but also grasping at that unlikely chance that he might actually pass the test, and he could finally succeed at something. I've written before how important it is for him to realize some measure of success. Maybe this is it.
Well we ran into one problem right away. He couldn't sit still through the classes, and when the teacher redirected him, he became defiant. So there I was, on the phone again, negotiating. The teacher wanted to kick him out of the program, and he can do that. It's a private company, a private class. I'd be out the money, but oh well. I was going to try to convince him otherwise, as I had done so many, many, many times before, but then I thought better of it. "You do what you have to do. I realize I won't get my money back, but that's ok. Some day he has to learn to submit to authority. Maybe that is today. Better now than in a work setting."
Mr. M. paused, and then replied. "But I hate to do that. On the road, he's the best driver in my class. I'd like to give him one more chance."
Well here we go again. John was verbally defiant and disrespectful, and darned if he wasn't given a second chance. Something about his charm, which he can bring to the fore when he needs to. It's amazing.
But to no avail. He couldn't pass the written test. Missed it by one question, and that was with a reader. To be fair, it's a hard test. Michigan has recently cranked this up quite a bit; you can't just sluff it off. Beth, our honor roll daughter, only passed it by two points. But John didn't make the cut, and he walked around all summer in a blue funk. Once again, and for the zillionth time, he did not succeed.
Here we are, almost a year later, and he's trying again. Different class, different teacher, and this time his aid is helping him. His schoolwork is suffering, as he spends all his time on drivers ed, but I think that's a fair tradeoff. School was never a resounding success even on a good day. So he studies, and takes all the practice tests - and sails through the written test with points to spare. He also does well on the road test, as he did last year. And this time around, no behavioral problems whatsoever. So now, finally, he has his permit. It's a real achievement, and nobody handed it to him. He earned it by his own hand.
Some, including members of my extended family, say he is not emotionally mature enough to drive. Too much responsibility. And they might be right. This is a game where we never have enough information to make a good decision.
NFF: Guess what, they were right, and I was wrong. I didn't understand what an awesome responsibility driving is, and how the consequences can ruin your entire life, probably because I've never done it. I can't imagine the freedom of going wherever you want, whenever you want, and doing whatever you want. It is beyond my comprehension. But my friends and relatives, they knew. I made some mistakes with diet and meds and school and the like, all no big deal, but the real mistake that I deeply regret is letting these two kids drive.
She comes home from school on her birthday and has several events planned. Lunch with a friend, and then a celebration with her new boyfriend Chad. I don't know him well, but he's got to be better than her last boyfriend, who beat her up in a fit of peak. Anyways, none of these events came to pass, and Mary is terribly depressed. "I want my hotel room tonight." she demands. She's lost so many credits, I hate to jeopardize summer school. Miss three days and you're out. And her class runs 8 to 12. Besides, we can't really put this together at the last minute. Remember Wendy's favorite saying: "A failure to plan on your part does not constitute an emergency on my part." So I refuse, and Mary is furious. She storms out of the house and does not return that night, or the next, or the next. Nor does she communicate in any way, except a short text message saying she is ok. This behavior is unacceptable, to say the least. She's 18, so I can't make her do anything, but I can decide whether she is allowed back into my house.
We are all angry with her, even John, who usually defends her no matter what. "She's being a real bitch." he declares. And then, in the next breath, "Can I have her room?" It is larger and more comfortable, with carpeting. We agree, and I help him move the furniture. If Mary does come back home, she's in for a surprise.
All this takes a rather unlikely turn when we finally talk to her a week later. I want to slam the door in her face. I want to tell her to go figure out life on her own, since she really thinks she's all grown up and doesn't need us any more. But darned if she didn't go off and do something noble. An older woman named Shelly lives in an apartment near Chad, and Mary has been staying there, sleeping on a hide-a-bed in the livingroom. I meet Shelly for the first time, and survey the small apartment. Indeed it is quiet. Shelly watches movies all day, and that's about it. No internet, no kids, no dogs, and especially, no arguments. After 18 years of chaos, Mary has finally found some peace. But beyond this, she is helping Shelly, who is disabled after a recent operation. Mary walks to the nearest grocery store, rain or shine, and buys food for herself and Shelly. She also cooks the meals and cleans the house. It's a great learning experience for Mary, and it helps shelly, who is in a difficult situation right now. How can I say no to that?
Of course summer school has been abandoned, and that's a shame. But it won't matter in the long run. Mary failed economics this spring, so she can't possibly graduate on time, with or without the summer credits. She's in for an extra semester either way, so what's the diff?
|If a man has a stubborn and rebellious son who will not obey the voice of his father or the voice of his mother, and, though they discipline him, will not listen to them, then his father and his mother shall take hold of him and bring him out to the elders of his city at the gate of the place where he lives, and they shall say to the elders of his city, "This our son is stubborn and rebellious; he will not obey our voice; he is a glutton and a drunkard." Then all the men of the city shall stone him to death with stones. So you shall purge the evil from your midst, and all Israel shall hear, and fear.|
Just 30 years ago, Dan Fogelberg wrote about his father's "thundering velvet hand". Everyone my age and older knows what that means. Jeff Foxworhty recalls, with just a slight exaggeration, "A time-out? My father would take a time-out from his busy day to beat us." We all laugh nervously, because we know it's true. Bill Cosby has devoted hours of stand-up to this topic as well. "The belt will wail tonight!" It's funny because everything has changed. We are now enlightened. We know that harsh punishments are counterproductive. Well at least we think we know … don't we? But sometimes we wonder.
If a child can't control his actions, and operant conditioning is applied, even a gentle version thereof, then the child quickly falls into learned helplessness. He fails, again and again, and is punished, again and again, for things beyond his control. He gets depressed, angry, antisocial, and even psychotic. Hence the belt has been replaced with a time-out. We have adjusted our parenting style, and I suppose we must. but it dodges the underlying question. What is wrong with the brains of our generation? Why are 7 million kids on ritalin, with plenty more who should be? Why are policemen stationed in the halls of our local high school in an affluent suburb, while my high school, 30 years ago, never saw a policeman even once? Something has changed, something that evolution could not anticipate.
I've heard a lot of theories. I've entertained a lot of theories, as you know. Some have even implicated Sesame Street. Not that show specifically, but fast paced tv viewed before the age of 2. Look it up - you'll see the articles. And video games, and synthetics and artificials like red#40, and both parents working or the single parent working, and not breastfeeding, and the hygiene hypothesis, and on and on. Yes, much has changed, and that only confounds the problem. too many variables.
My personal favorite has always been the diet, and it still is. Well whatever the reason, the kids are different, and that has forced a change in parenting styles across the country and around the world. We don't even realize that it is happening. We see that our inflexible and harsh punishments damage the children, and we publish articles in psychology journals and parenting magazines, and the dogma shifts. We assume the parenting style is to blame, and was always at fault, just as slavery was always wrong. But maybe the parents of old were right for their time. Maybe parenting was honed by evolution over a thousand generations to be what it is, and now we are forced to change it in one generation, because the children have changed out from under us. I can tell you that friends and relatives, almost without exception, see my son's behavior and quickly drag out the time-tested techniques. "You don't have to put up with that. You're way to permissive. Lay down the law. Give him consequences and make them stick; he'll shape up." The reaction is almost instinctive, as though it were hard-wired in our parental brains. I have the same reaction, and I still have to fight it, even after ten years. This approach may have been correct in the past, but now it's wrong, and it will probably be wrong forever more.
I'm just speculating of course. I don't know; nobody really knows. Maybe corporal punishment was always wrong - always harmful. But it seems to be part of us, as though evolution had put it there, as though that was the best way to raise kids 10,000 years ago, or even 100 years ago. All I know for sure is that it is failing us now - that it destroys the kids who are emotionally impaired, and that's a lot of kids, a larger percentage than we would care to admit. We are, all of us, being moved in this direction by an invisible force - by a generation of children who cannot behave, even if they want to. By a generation of children who could never sit still ong enough to watch Mr. Rogers. Our new approach to parenting, along with ritalin and IEPs, is just another bandage, just another desperate attempt to treat the symptoms, because we do not really understand what is going on beneath the surface.
And she's working; the only one in our family to have a nearly fulltime job. It's only minimum wage, but her expenses are very low, as she is living with friends rent free, so it doesn't take much to keep her head above water. compare this with my $1,500 mortgage payment, $240 car payment, $600 utility bills, $330 insurance, and on and on. Life is much easier if you can avoid long term financial commitments.
But as I think about Mary, and I do miss her, it's not all smiles and joy. She didn't leave on the best of terms, and that makes us sad. She's at that age where she thinks we're horrible people, and horrible parents. I hope she gets past this, and soon. In addition, she is in danger of falling into the trap that we all step into at one time or another - thinking you are in love with someone, and perhaps committing to that person, simply because he is there. He's not a great match, but he isn't abusive, and sex is wonderful, so on we go. I did it too; I lived with a woman for two years who wasn't an ideal match, but she was nice, and she was there. If you didn't fall into this trap, I'm sure you know others who have. It's all too common. I just hope Mary doesn't invest heavily in her new, nextdoor boyfriend, because he's just a kid emotionally, and he's not a good match for her. I can see that - anybody can see that - except perhaps for Mary, who is in the midst of it.
The 2009-2010 school year didn't start out well. John would have a couple good weeks, then blow up at something, then another good week, then another suspension, and so on. Sometimes he simply refused to go down to the office; he wouldn't even leave the classroom. In a follow-up meeting, he staunchly defended his position.
"Well if Nancy had asked me to go to the office, I would have gone. She asks nicely. But when Mario comes up like that and gives me attitude, he can shove it, I'm not doing anything for him."
The principal was stunned, and understandably so. It took him several minutes to formulate a response.
"Do you mean to tell me that you will decide who you are going to listen to and when? Do you mean to tell me that you simply aren't going to follow directions if you don't want to? What if all 2,000 of my students did that?"
This sort of logic is beyond John. He has no comprehension of authority. Everybody is equal in his eyes, including us. If we, as parents, haven't been nice to him lately, in his opinion, then he really doesn't have to do anything we say, and we can go to hell. His world-view is sick and twisted, but it is consistent and predictable. I can tell, from the previous few hours, how John is going to react. Unfortunately Wendy cannot, and that is one of the reasons they don't get along. She can't anticipate his reactions and prepare for them, and in some cases avert a disaster the way I can.
Anyways, the principal is now involved, and he wants John out. He considers John to be a risk to himself and others, and he's not far off the mark. At times the school policeman has been called to the scene, with tazer in hand, before John would go where he was told. So the principal placed John on indefinite suspension pending a hearing. After some research, the school social worker recommended a school that is similar to Max, though not as extreme. We went to see it, and no, John wouldn't last a day there. We called to cancel the bus, which was already scheduled for him, and the dispatcher asked us, "Does he really have a choice? Most of our students are court ordered to come here." 'Nuff said.
We brought in an advocate, Marega, from the ACMH, and she could read John like a book. This only served to make him angry, and push him further back into denial. "I'm not like that, it's all their fault. They're racist; they kicked me out of school because I'm black. Those teachers are horrible; I'm just fine." And so on. But she handled him like a pro, like someone who has done this a hundred times. She went to the hearing with us, and in the end we decided to give John one more chance. He did pretty well for a month or so, and then had another blow-up near the end of school. They immediately tried to kick him out again, but this time we had a written behavior plan that charted another course. He was removed from that particular class, but was allowed to continue in the other classes where he was successful. "Don't throw the baby out with the bath water." is the essence of our latest IEP. Marega helped us write this behavior plan, and she convinced everyone to sign it. So as I write this, he is still enrolled in the public high school. I have no idea what his schedule will be in the fall, or even if he will go. He is extremely depressed about the whole situation right now. If he does start school in the fall, he almost certainly won't make it through the year. He doesn't have enough control to suck it up each day, day after day, for a year, and he's pretty bored with the whole experience. He believes it has little to offer, and he's probably right. We're shooting for a certificate, not a diploma, and that is of limited value. And after three years of auto shop they don't have much more to teach him. So I have no idea where he will be a year from now.
I was unemployed for most of last year, and I am still underemployed, barely making ends meet, and yet we have spent $46,000 on cars. I'm not even sure where the money came from. A good chunk of it is financed of course, but the rest came from our savings account, which is now sadly depleted. This was suppose to be my buffer against further unemployment. If I don't find a good job soon, we are all at risk. How did this happen?
It started back in January. Remember my premise - John must succeed at something, and soon, or he could travel down a very bad path. After 11 years of sleepless nights and tears and indescribable sacrifice, I can still picture John in jail, or in an institution, or under the ground. I am of course tragically underestimating his resilience and his intelligence, which I have written about before. He doesn't have to succeed this year or next; he'll bounce back. But that's not the way it seems when you're in the midst of it. After all, my brother committed suicide at age 16, and he didn't have nearly as many issues as John. So this is the backdrop that sets the stage.
Other than his autoshop class, school has little to offer. And after three years, autoshop has pretty well run its course. So school is an ongoing source of frustration for him and for us, with little to be gained. This will never be his venue for success. So that leaves work.
In January he came home all excited about a job offer, and how much money he was going to make, and how great it would be, but he needs a car. "Don't worry, I'll make the car payments as soon as I get my job rolling." I must admit, his excitement was contagious. We bought a used Cadillac for $5,400. That's really all we could afford. Unfortunately we had to sink another $2,000 into it within the first three weeks to keep it running. After that it was in good shape, and we were on our way, right? Wrong.
I don't know if I should even admit to the Mickey Shorr's fiasco. Like everything else, it begins and ends with John's frantic optimism. "I have to have a gps for my job. I'm going to be driving people all over town, and I can't afford to get lost." I pointed out that a portable gps unit is only $100, but that wasn't good enough. "It has to be a luxury car. They won't hire me unless the car qualifies as safe and luxurious. It's sort of like a limo service. So I have to have an in-dash navigation system with radio and cd and dvd etc. Don't worry though. I'll be making $35 an hour, and I can pay you back in no time." I was a bit stunned by the prospect. Thanks to the Michigan recession, I'm not making that much money per hour, even with two masters degrees. Could my disfunctional son possibly make more than me, without so much as a high school diploma? I hope so. But remember, if something sounds too good to be true, it is. We get sucked in again, and pretty soon we have spent $1,700 on after market equipment. But wait, there's more. Somehow they damaged the air-bag system when they installed the radio, and naturally they won't admit to that, so we had to spend another $600 to get that fixed. "They won't hire me if the car has an air-bag light on." Now, finally, the car runs beautifully, and it has everything John needs for his job. We should be good to go, right? Wrong.
john is never happy with anything for very long. The grass is always greener, always lush and beautiful and pastoral, on the other side of the dealership. By the end of February he wants to trade his car in for something else, and his quick subconscious came up with a million desperate reasons why we just had to do it. "My Cadillac gets crap gas mileage. And it requires premium fuel. I'm going to be driving all over town for my job, we really need a more economical car." Well that makes sense, I suppose, except, "Why didn't you think of that before we bought the damn thing? Why didn't you think of that before we spent $2,000 on after market crap?" He has already formulated an answer to the second question. "They're giving us credit for that equipment, a great deal on a trade-in. We'll be getting all that money back." Bull shit! I often refer to this kind of thinking as "sunshine". Like blowing sunshine up your skirt, or wherever you may choose to put it. The dealer is probably giving us an extra $300 for that equipment, certainly not $2,000. Whoop the frickin do. But John believes the sunshine - he believes anything that will further his goals. He talks about this trade-in day and night, and wears us down like sand paper. Finally we say yes, thus giving a couple grand to the dealer for the privilege of the exchange, plus another grand to the state in taxes and fees. This is thrashing, and my party's just beginning.
We got, in exchange, a Chrysler 300M, and it lasted about three hours before the transmission blew. fluid pooling on the road, smoke in the air, and a tow truck on its way. A complete melt down. The dealer fixed it, whereupon it lasted about five hours before it blew again in exactly the same fashion. Lordy! To his credit, Ken, at Cars For You, made every effort to rectify the situation. He gave us a Saturn Vue, which is one of the nicest used cars you'll ever see. However, we went down a tortuous path to arrive at that conclusion. Having experienced a complete transmission failure, John was now paranoid. "The transmission doesn't feel right. It skips. There's something wrong with it." Again, he talked about this day and night in a near panic. "I'm not going to drive it. I just don't feel safe. I guess I can't take that job. But you don't seem to care, do you?" We took the car to a local mechanic, and he put it on his machine, and yes, the transmission seemed to jump and skip. There was something wrong with it. Needless to say this put all of us in a bad mood. We went back to Ken and demanded our money back, and he wisely refused. "We drove that car for a month; it's fine." In the heat of the moment we threatened to sue, and I am completely embarrassed about this in retrospect. We finally did what we should have done in the first place - we took the car to a transmission shop. They summarized the situation as follows. "It's a Saturn, their transmission is like no other. It looks like it is malfunctioning if you put it on a standard diagnostic machine, but it's fine." they could have charged us, through our warranty company, $3,000 to put in a new transmission, and I wouldn't have known the difference. Instead they charged us nothing and sent us on our way. Yes, there are honest mechanics out there. And honest used car dealers - thank you Ken for this car. So the Saturn is fully functional, and John is good to go. But wait a minute - what happened to the luxury requirement? A Saturn is surely not a luxury car. Well John has given up on that job, and has moved on to another one. He is going to be a porter for a dealership, and he doesn't need a luxury car for that. "This job pays $25 an hour, and that's still pretty good." Damn good, I'd say. So we're ready to go, right? Wrong.
Within a couple weeks he is not happy with the Saturn. I don't even remember why now - that was so many cars ago. We relented, only because Beth was in love with the car. "It's a great car, I'd love to drive it." Do you have a seriously disabled child along side other children who don't require a lot of attention? Do you know what it's like to virtually ignore your daughter, simply because she is no trouble at all? She does what she is told, and she is on the honor roll at school. "Nice job." as I give her a quick kiss. "Carry on. I have to go spend all of my time and money on John." This girl, who asks almost nothing of us, has quietly wished for a car of her own for over a year. I decided that enough is enough. If anyone deserves a car, it's Beth. We buy a 10 year old Aurora for John, and give Beth the Saturn.
Beth is thrilled, and drives all around town, happily ignoring the minor imperfections in the car that would drive John crazy. Indeed, I am watching her blossom socially and emotionally. And the friends she brings home are just the nicest people. This almost makes the entire car saga worthwhile. Almost - let's hold off on that judgment until you hear the whole story.
The Aurora has problems from day one. Spark plugs and fluids, just like the Cadillac, plus a persistent oil leak which is estimated to cost $1,500 to fix. Here we go again. "I don't feel safe driving that car. I guess I can't take that job. But you don't seem to care, do you?" I decided to dump this car and buy a newer vehicle, provided I can finance it 100%, with no money down. You just can't save money buying an older car. It just doesn't work. So we buy a two year old trailblazer, and give the Aurora to Mary. It's a nice car. But you guessed it, within a couple weeks John is not happy with it. "The transmission skips. Don't you feel it?" Wendy drives it, and I sit in the passenger seat, and no, we don't feel a thing. It doesn't matter though, because the prince has ruled.
We go back to the dealership and trade it in for an older, but much less expensive Cadillac. More thrashing, more money down the drain. Now we have a nice car with no problems, at least for a week. Then there are $2,000 worth of problems to fix. We fix these, and another $2,000 worth of problems crop up. We report these to the dealer, and he takes it back, giving us almost what we paid, if we are willing to take another car in exchange.
The seventh car is a Pontiac Grand Prix, and it is only 4 years old. It's been a week, and so far there is nothing wrong with the car. We've changed some fluids, and one tire; that's it. So we're ready to go, right? Wrong.
Suddenly John needs a luxury car again, and then he's going to make big money. He has his eye on a Lincoln Town Car, and you guessed it, we make the switch, thrashing once again. But this is the nicest car we have purchased to date. It looks good, and it runs well, requiring almost no repairs after the fact. If you have to buy a used car, this is it; It's a sweet car.
By November John is once again dissatisfied. The Lincoln gets bad gas mileage, and he wants a new Malibu. Some kind of great deal, some kind of end-of-the-year special. And here's the real sunshine - he knows somebody who will pay 20 grand for the Lincoln, giving us nearly 10 grand in profit. I lick my lips at the prospect. But let's be practical; we should sell the Lincoln first, and realize the profit, then buy the Malibu. The bank probably won't let me finance the Malibu in any case, unless I divest myself of the Lincoln first. My credit isn't that good, and my income certainly isn't that good. I explain all this to John, logically, but noooooooo, the great deal on the Malibu is this week only. We can't wait around for the Lincoln to sell; we have to act fast. So says my spoiled brat son in a near panic.
The 20 grand buyer, waiting in the wings, is a lie, the beginning of a tangled web that will grow, like the Chicken Heart, until it covers the entire state. He just wants a new car, that's all, and when he wants something he'll make up stories so compeling and so convincing that you just get swept away. Not whoppers like Mr. Frisby, but carefully crafted fairy tales that you really want to come true. "Give me this one thing, or help me out of this situation, and if you do then something wonderful is going to happen to our family." This is a recurring theme that will be magnified ten fold when it is used to support his addiction. The Chicken Heart is only a few meters wide today, but it will grow, and grow.
I am understandably skeptical about the upcoming sale of the Lincoln, but I relent, and purchase the Malibu on my good credit. Why? Because the Aurora has fallen apart, and Mary will need another car. When the Lincoln does not sell, for some mysterious reason that John will make up later, I can give it to Mary. Living in Michigan without a car is like living on the moon without your spacesuit. Before John and Mary came into our lives, we spent five years living in the Chicago area, with buses and trains and the El. You could function there without a car, without a license, even without sight. It's a magical place, alive with universities, and a bustling economy, and music, and theater, and so much more. And the food - the food is heaven! I don't waste my time eating pizza any more, not after chicago. But I digress.
I finance yet another car, with the Lincoln and Buick still weighing us down. A third car payment that we can't afford, plus car insurance and maintenance and gas and the whole nine yards. Wendy is furious, and she has a right to be. This is the beginning of the erosion of our marriage. Thus far we have been a team through thick and thin, at home and at school, year after year. We have worked together, side by side, to get through this twelve year nightmare. Now we are at odds. I am going one direction and she is going another, and the difference is not trivial. It's not a matter of which cereal he eats in the morning, these are decisions that cost tens of thousands of dollars at a pop, while my income is sub-par and our future is uncertain. These are decisions we should be making together, and we're not. Unfortunately things will get worse before they get better. My marriage to Wendy is the most beautiful thing I've ever experienced, like Beethoven's seventh symphony, and I don't think I can ever forgive John for playing his rap-crap on top of our symphony. Perhaps its more my fault than his, and in that sense, I don't think I can ever forgive myself for jeopardizing our marriage, a treasure beyond words. At times Wendy will threaten to leave me, and even pack her bags in preparation - but we hang on through some very dark times, and by 2014 we have put our marriage back together again. It's almost as good as new, better in some ways, and stronger, but with a few cracks that have been crazy-glued together. I am reminded of the lyrics by Dolly Parton, "Gonna tie our love in a double knot - 'Cause these days love gets strained a lot." So this is a warning, dear gentle reader; dark times are ahead, but Wendy and I are still together, and we will always be together. We just love each other too much.
Throughout 2010 John has made no money that I can see. If he made any money at all, I don't know where it went. No success for him, and no financial help for us. It was all a lie, or optimistic sunshine, I'm not sure which. His optimism has kept him alive all these years, through abuse and disruptions and an unending string of failures, but it is so far away from reality that it can send him, and us, careening down an irrational path. We may as well mortgage our house and spend $50,000 on lotto tickets; we're sure to win.
After my second helping of brats and fresh corn and salad, we meet a gentleman who has, by coincidence, adopted three older, abused children. The oldest boy was, in his first few years of life, splashed with boiling water, peppered with cigarette burns, and sexually molested. The other boy and girl were treated almost as badly. So what's the story 18 years later? The older boy is in prison, and the younger boy has court cases pending. The girl is about to enter the army, and she just might turn out to be a success. All three hated their adoptive parents, and weren't afraid to say so, in words and in deed. The girl ran away from home, like Mary, and both boys were violent. The older boy had to be removed from the house for a time to keep everyone safe. Sound familiar?
An hour later we spoke to a 73 year old woman who had, by coincidence, adopted five troubled children over a span of 20 years. Two of them were not turning out well. One was headed for jail, and the other had attacked her just a week ago. Picture a strong 16-year-old boy/man punching holes in his wall, and then going after this frail, elderly woman, who has been his provider, guardian, and mother for the past ten years.
"After the incident," she recounts, "he started to cry and just couldn't stop. He knew what he had done, and couldn't come to terms with it. That's what makes it so hard. That's why I don't just get rid of him, even though he is a danger to me."
The pattern is clear. Sometimes these damaged children cannot be fixed, at least not with present day methods. Of course my kids weren't treated this badly, at least I don't think they were, so I haven't given up yet. And it's good to hear we're not alone. There are thousands of families like ours that suffer in silence, believing their stories are somehow unique. They are not.
The June 28, 2010 issue of Time magazine has an article titled When the Adopted Can't Adapt. Everyone should read this article. Here is the link to the story online. If this link doesn't work, find a print copy of the issue and read the article. You'd think it was written about us; you'd think the author had lived in my home for the past ten years.
I'll try to summarize the key points in one or two paragraphs. Children adopted from Russia are often older than those adopted from Korea, China, Mexico, or Central America, and their first few years were not pleasant. Neglect is typical, and abuse is not unheard of. Serious medical conditions go undiagnosed, or undisclosed. You just don't know what you're getting. These kids come to America and try to adjust, and sometimes the outcome is tragic. Rebellion and violence are common, as the adoptive parents try to hang on.
Why don't we just give up? Why don't we just put them back into the system? Because we have been brainwashed into thinking that this is their last chance. We are their "forever family". How many times have you heard that one? If we give up on them, we are branded as failures, and these rejected children will surely wind up in jail, or worse. We hear this over and over again, and nobody stops to question it. Nobody stops to ask whether it is really true.
Step back a moment and take a look. The two families that we talked to both have kids in jail, and John is on his way (we just don't know it yet). What we're doing isn't working. The outcome that we fear is already taking place, despite our best efforts. Something is terribly wrong. It's time to try something else. Is there an alternative? The article says their is. Admit that you cannot raise these children. Set pride aside and admit that they would do better somewhere else. If your kids are a danger to you, or making no progress at all, perhaps they need a second home. The article says some of these kids use the first home as their scapegoat. They have to blame someone for their bad behavior and their sad lot in life. They can't blame themselves; that is simply too much to bear. Even adults rarely take responsibility for their own actions. And they don't remember their first few years, when the train first jumped the tracks, so they can't blame their past either. That leaves their new home and their adoptive parents. When these kids move to a second home, they often do better. Realize that the second home is no better than the first. In other words, it's not your fault. The two households are just as loving, just as patient, and just as well trained. But the kids can blame the first home for all their troubles, and grow and flourish in the second. It's a revolutionary idea, and I think it's right.
If I had read this article 5 years ago, I don't know if John and Mary would be with us today. John was violent, and dangerous, as illustrated by our spaghetti dinner, and many other incidents that I have not put up for public display. And both kids wanted to leave, and told us so regularly, just as the article describes. We should have said, "Fine, off you go.", and put the wheels in motion. But I don't think there were any viable options at that time. We could have put them back into the system, but DCFS wouldn't have known what to do with them. Organizations like Mending Hearts didn't exist, or they were not well known. Today, it is possible to move your troubled children to a second home, instead of kicking them to the curb and locking the door in blind terror. There are alternatives.
To be Fair, John isn't violent any more. He has come a long way in the past couple years. He annoys us from time to time, but we don't fear for our safety. It didn't have to turn out this way though. He could have stayed the course, or things could have gotten worse. We got lucky. Not so for others.
I think the aforementioned article in Time Magazine points to a revolution in the adoption industry. When a child has been abused or neglected, we should plan on two homes, the first and the second. This could be the path to healing.
According to the New York Times, at least half of our prisoners are mentally ill. They weren't all neglected as children of course, but for those who were, can't we do better? I think of the two families we talked to, with two kids in jail and two more headed in that direction. The cost to society is enormous, and I don't even know how to describe the heartache for the families involved. We've seen it, we've lived it, we know. If there is a better approach, we owe it to ourselves and our children to implement it as soon as possible.
Returning to the graduation party, it occurs to me that there are those who understand, and those who don't have a clue, with a vast gulf between the two. This tired, 73 year old woman understands; we give her a big hug just before we head home. "May God bless you, and reward you for all your hard work." The others at the table, listening in on our conversation, just can't imagine what life is like with these kids. You love them as you would any child, but some days you wish they would disappear, never to be seen again. Even a peaceful meal at the dinner table, or at a restaurant, can explode into violence at a moment's notice. You can never let your guard down, and your entire life is spent walking on egg shells. Nobody should live like that. The normal parents, sitting nearby, are worried about a C on their son's report card, or their daughter coming home 20 minutes late from a friend's house. That's it. It's truly a Brady Bunch world, and when they start to get a glimpse of my world, they are appalled. "My God, why don't you get rid of those kids and get your life back?" Oddly enough, for the first time in 10 years, I am starting to think there is a kernel of truth beneath their ill-informed advice. Once we had diagnosed John's carbohydrate induced microbial imbalance, with a blood test to prove we weren't just waving magnets around, and once we understood Mary's reactions to red#40 and MSG and cats and lavender, we could have passed all this information on to the second home, where the kids could have started fresh. The author of the Time article spoke to a second Mom, who acknowledged, referring to the first family, "I'm just reaping the benefits of all their hard work."
Hard work is right. I can tell you from personal experience, it's exhausting. What parent can do this for more than five years and not become damaged themselves?
Rarely do we actually see a true revolution. And yet I think, I hope, a revolution is brewing in the adoption industry. Perhaps, ten years from now, the two-home approach will become the accepted standard of care for abused children who remain stubbornly antisocial in their first placement. When all else fails, the parents, and the children, just need to move on.
Taking a step back from the extreme, what about the millions of children who have enough to eat, and a safe home, but not much more? for whatever reason, nobody is playing with the child. Interactions with loving caregivers are few and far between. The child grows up, and functions in society, but does he lack empathy? A controversial new theory suggests kids could lose some of these positive traits if they are not reenforced during early childhood. The idea is fairly intuitive - if hideous abuse damages a person for life, perhaps substandard care has a small yet measurable effect. We may be raising a generation of uncaring, unfeeling people. That would certainly explain the Tea Party. That's a rather alarmist view, but read the article in Scientific American and decide for yourself.
Trent is born on September 21. Thus begins a new life for Mary, a hard life without a lot of options. No college, no career, just part-time minimum wage jobs wherever she can find them, and taking care of Trent, or convincing Chad or his relatives to do so when she is at work. Lord knows they can't afford daycare, they can't even afford diapers. For good or for ill, they are joined together, Mary and Chad, as co-parents of this little boy - whether they get married or not, whether they live together or not, whether they love each other or not. That's the choice she has made, a choice that is two awesome in its implications for her to comprehend.
We are grandparents again, but moreso this time, because our daughter is responsible for this grandchild, and when she falls short, as she surely will, (at least financially), then we become responsible. This is the choice she has made. If it were up to me, I would put him up for adoption in a heartbeat. I would give him the same wonderful life that Karen has, maybe even with the same family. But it's not my call, so Trent is now Mary's responsibility, and ours, at a time when we are barely getting by. Ah well, another blessing.
It's late, almost 11:00. Wendy and I are at home, waiting for John to return. Instead he calls in a crying panic. He is on his cell phone, and I can hear the Onstar agent in the background. John has endured so much in his life that he just doesn't cry any more. He is almost beyond tears, but he's crying now, so something is terribly wrong.
"Chad hit Mary."
That's all he can say, over and over again. The Onstar agent is trying to get more information out of him, but he is not coherent. The police are on their way, but everybody leaves the scene before they arrive.
John and Mary are not answering their phones, so we wait, and wait. After midnight John comes home and tells us that Chad did not like a number that was on Mary's cell phone, a man that he was not familiar with and had not approved, so he punched her in the face. That's how Chad operates, and that's how a lot of men operate. Violence against women is an unrecognized epidemic in this country. We see it in braod daylight with crowds cheering in far off lands, and we chuckle to ourselves and say "It doesn't happen here," but it does. My boss lost his sister to domestic violence, and he started the Every Great Reason foundation to raise awareness, and combat this scourge upon our land.
We put John in our car and drive back to Mary's apartment, but nobody is there. Twenty minutes later John gets a call from an unknown female, saying Mary and Trent are safe. He calls back, but there is no answer. This is the only information we get, as we drive back home and go to bed. There's nothing else we can do tonight.
The next day we go back to her apartment and she is there, with Chad of course, and they deny everything. We look at her face and there is no evidence of the crime, but black people don't bruise easily. The policeman tells us what we already know; there is nothing we can do. Like a typical battered woman, she is hopelessly devoted to her man.
The Lincoln is in the driveway, and it is in Wendy's name, so we take it back home with us. We need to sell it, for break-even if necessary, because the payments and insurance are just too much. And perhaps the lack of transportation will encourage Mary to leave her abuser and come backhome with us. I've already written about the challenges of functioning in Michigan without a car. But she doesn't come back home to us, ever.
The police started pulling him over when he was 14, on his bike, riding down the sidewalk. They would ask him all sorts of questions, and some threatened to give him a ticket for biking too fast. No kidding! If you don't think the police are racist pigs, then pass it around, because I want some of what you are smoking. My brother in-law, with a perfect driving record, gets pulled over all the time. He gave John some real-world advice about driving, and the police, and DWB.
|Keep your hands in sight all the time. Keep your license and registration in the overhead visor. Reach up, pull them out, hand them to the policeman, then put your hands back on the wheel. Don't risk putting your hands in the glove compartment, or in your pockets. He might misinterpret. If he shoots you, he'll just say he thought he saw a gun, he thought he saw you pull something metal out of the glove compartment, and he'll win in court. The judge, who needs the endorsement of the police department for his next election cycle, will rule in favor of the police every time, and even a jury, mostly white, will sympathize with the poor policeman, who puts his life on the line every day to keep us safe. "It's a regretable, but understandable mistake." the jury will say. Never mind that you shouldn't have been pulled over in the first place, you just looked "suspicious". You'll be dead in the ground, and the policeman will receive a reprimand in his permanent file. That's how it works.|
There are online tutorials teaching these survival strategies to minorities. If you think overt racism ended in the 1960's with the Civil Rights movement, then I say again, pass it around.
Against this backdrop, you can see why I would take John's side, at least at the outset. You can see why I would believe him when he said he was being hunted, and unfairly targeted by the police. It is, sadly, all too plausible. But it's not true, he really was driving like an asshole. I hired a lawyer, and we pulled the videos. It's hard to contest what we saw on the screen.
"I would call it reckless driving." recounts our lawyer in confidence. "You're lucky they just gave him a traffic ticket."
Not one ticket, but several. John received five or six tickets in the span of four months. With the help of our lawyer, we bargained the tickets down to a manageable mumber of points and a one-time fine. So that situation is resolved. Maybe John will drive a little safer now.
This was my cue to yank the car; this was my cue to yank his driving privileges. I say again, don't let these kids drive! But I let him drive anyways, hoping he would land a job, hoping he would succeed in something - and instead he winds up in jail with multiple felonies. Maybe that would have happened anyways, but I doubt it.
Things went along pretty well until April of 2011, when John called us from jail. They arrested him for reckless driving. If you don't live in the midst of this insanity, I'll bring you up to date. Traffic tickets are civil infractions, not a big deal - but reckless driving is a misdemeanor, punishable by up to 93 days in jail. The police report said he was racing across the grass towards a group of people. However, none of these people filed a police report. I would, if a car was hurtling towards me, wouldn't you? And there were no tire marks in the grass, and no skid marks on the road. We asked for the video, and it was blank. It only showed them arresting him, nothing before. This is a case we could have won, and I wish we had taken it to trial. Instead, he pled No Contest in exchange for the dismissal of another, unrelated charge. So we ate this one, not knowing it was the first in a long line of misdemeanors to come.
At the dawn of 2011 our mortgage went up by almost $500 a month. Something about insufficient escrow for several years and now they have to make up for lost ground. Like that's my fault. Combine this with my woefully inadequate salary and the ends simply did not meet. Thank God for President Obama's short sale program. He has done so much to help people in need; I hope you voted for him, twice. And thank God for Wendy's brother Jack, who is in real-estate, and specializes in short sales. We started the paperwork, but remember, a short sale is still a sale, so we still had to show the house. It has to be presentable and attractive, a place you'd want to call home. There's some clutter here and some clutter there, we can take care of that, but John's room should be condemned. It looks like something you'd see on Horders. Papers, discs, dirty clothes, dishes, food, old auto parts, everything but the dead cats. It's a foot deep everywhere, with no floor in sight. Lord knows we can't ask him to clean it up, that is simply beyond him. And even if it was spick and span, he would trash the place in a week. He has the emotions of a 5-year-old, with the possessions and the eating habits of a teenager. He has to be somewhere else for 3 months while we show the house. There is just no other way.
As luck would have it, John has a brilliant idea - go down to Florida and start a new life. The timing is perfect. We send him down, at my expense of course, with two friends Dave and Maggie. We soon learn that Dave is somewhat immature, and Maggie is an absolute leach. John works hard every day cleaning houses for slightly more than minimum wage. Dave Joins him in this effort, sometimes, while Maggie sits at home and racks up an enormous cable bill watching movies on demand. In August John realizes that he will never make ends meet, and he returns to Michigan. In the interim we clean up the house and sell it for some $20,000 less than what we owe, with Obama making up the difference. Mission accomplished. But John's new life in Florida was not meant to be.
John sits on the couch in the house that he grew up in, the only house he has ever known, a house that we must vacate in six weeks, and laments, "You know Mom I almost made it. I could have made it if I didn't take those two along. A cheaper one bedroom apartment with just me, and I might have made it."
Well maybe so, and that might have averted the nightmare that is yet to come. He might be self-sufficient in Florida by now, well on his way to a great life. Or maybe he would fall into drugs in Florida, just as he did here in Michigan. Addiction is a trap that knows no geographical boundaries. Then he'd be in a Florida jail, 1,000 miles away, where we could not help him at all. There's really no way to know, is there? The road not taken is just that, the road not taken. We can only move forward from here.
Ok, forward - where exactly is that? We have made arrangements to stay with friends, but our children are not invited. They already have two girls of their own, two dogs, three cats, one rabbit, and a border (Tory) in the basement. Tory is a mutual friend from college, and he is welcome, as are we, but the house is only so big. We're taking over their guest room, and bringing our two dogs with us, that's imposition enough.
Beth is starting Central Michigan University, so she has a place to stay - and Mary is sharing an apartment with Chad, calling for money on a regular basis to keep herself afloat. Where does that leave John? I can't afford to put him up in an apartment, and he can't move in with Mary; he and Chad hate each other. They didn't really like eachother from the get-go, but when John saw Chad hit Mary in the face last december, well, there was no forgiveness after that. With this in mind, John would rather be homeless in the streets than stay with his sister and her dominating boyfriend. Our only option is the Hanson family, who has known us for many years through church. They are willing, but he's too shy even to ask. For two months John lives in his car, but winter is approaching, and this lifestyle is becoming untenable. I finally convince him to stay with the Hansons, and accept their generosity. There is no guest room, so John lies on an air bed along one wall of the livingroom with his meager possessions in the corner. Well, he has hot and cold running water, so I guess he's rich.
Wendy's parents bought a home in Florida almost 20 years ago. Snowbirds, we call them - they went down to Florida in the winter and came back to Michigan in the summer. But over the past couple years they became too ill to travel, so the home was largely unused, except for some renters in the winter months to help meet expenses. We sent John, Dave, and Maggie down in June, because we knew they had a place to stay. We didn't have to spring for an apartment on day one. The house was a launching platform for them.
Wendy's parents knew about this plan, but were understandably concerned. True, they didn't use the house any more, but it was still a valuable assett, still in their name, and still their responsibility. Beyond this, the home is part of a senior complex, and everybody is suppose to be 55 or older. A tall black teenager is going to stick out like a sore thumb. If there is any trouble at all, or even a nosey neighbor who doesn't like living nextdoor to three kids, then we are going to have to justify it, somehow, from a thousand miles away. I'm not looking forward to that.
Wendy's parents, and especially her brother Jack, would have nixed the plan entirely if they had seen John's bedroom. Do we have any reason to believe John and his friends won't trash the Florida home, in a comparable fashion, from top to bottom? And what if this goes beyond an Oscar Madison nightmare - what if there is property damage? The carpetting in John's bedroom was utterly destroyed, with enormous stains that would not come out. We strategically arranged the furniture in his room to cover as many stains as possible, and hoped potential buyers would not notice. His bed use to be in the corner, now it is in the middle of the room hiding a huge pink stain of unknown origin. Yes, Jack would have nixed the plan entirely, if he knew.
This seems crazy in retrospect, and perhaps it seems crazy to you, dear reader, but remember, we had to send John somewhere in order to show and sell the house. It seems like we are always forced into these terrible situations by circumstance.
From the first week, the Florida trip cost more than I expected. John was always asking for more money, and more, and more. He didn't get paid til the end of the month, he didn't get as much as expected, things cost more than expected, his Malibu, barely 6 months old, broke down, and of course the warranty didn't cover that particular form of damage, and on and on. If he was rude about it I could have said no, but he was usually pathetic instead. "All I ate today was some chocolate. I get headaches because I don't eat enough, but I have to keep working, I have to get ahead." I'm a thousand miles away; what am I suppose to do? Let my son go hungry? No - I transfer more money to his account, and more, and more. Of course I'm not just feeding him, I'm supporting Dave and Maggie too. And then I'm supporting Mary and Chad. Read on and you'll see how they enter into the picture. I don't know what the entire Florida excursion costs, but I'm lucky if it's under 5 digits.
In the middle of July John says he is ready to move into an apartment. He doesn't have much money yet but his work is rolling, and he doesn't want to stay in Papa's house any longer. None of us are thrilled about having him in that house either, and we are getting anxious calls from the manager of the complex. After two weeks he has the right to evict any visitors, relatives or not, who are under 55, and he is ready to do just that. So it's time for John to go. The security deposit for his new apartment is $1,500. Based on the description of his bedroom here in Michigan, make a prediction - do you think we will get that deposit back?
Now the house is vacant, but what does it look like? Is there a tuna fish sandwich under the couch, rotting in the 98 degree heat? Somebody has to go down and find out, and Mary volunteers. She's been watching John from a distance, and she really wants to give Florida a try. Chad's relatives are willing to watch Trent until she is established in an apartment of her own. (Hey, if you thought the seniors looked askance at a teenager, try a crying baby at 3 in the morning.) I tell her she can go down, just her, without Chad, if she is willing to clean up whatever mess John has left behind - and she agrees. But she knows it's a lie even as it leaves her lips. Don't get me wrong, she can't spin a web of disinformation like John, he is the master, but she can still look you straight in the eye and tell you what you want to hear. It was her plan to take Chad all along, and she finally breaks the news to us when they are in Georgia. I don't even remember the lie she came up with, but it was ridiculous. He had to fly to Atlanta for something, and he wanted to see her, and since they were together and he was already there, couldn't he go the rest of the way with her, because if they were both working they would be more likely to afford an apartment and start a new life, and blah blah blah. So what do I do - tell them to turn around and come home? That doesn't get the house cleand up. Tell her to put Chad back on a plane back home? Not unless I'm willing to pay for it. Naturally they're out of money. Tell her that Chad is not allowed in our florida home? I can't enforce that from a thousand miles away. And what is the basis for that decree - since I let John's friends in the house, and they probably aren't much better than Chad. So on they go, Mary and Chad, the next wave of teenagers headed into the Florida senior complex. I tell the manager we hired them to clean things up and make repairs for the renters, which is plausible, as long as they don't stay too long. The manager, who probably doesn't believe a word of my story, quips, "Tell them to paint the outside while they're at it, and mow the lawn; the place looks terrible." He's such a jolly fellow.
Mary arrives at the Florida home and calls in a panic. "The place is stripped! No dishes, no pans, no toilet paper; there aren't even any beds." No beds? This is one of those moments in life when I am stunned. I expected a mountain of trash in every room, but I didn't expect the place to be gutted. Did John and his friends take all that stuff for their apartment? Are they really that self-centered? They know Mary is coming down, and renters in November. I call John, and he denies it all. "We moved the furniture into the porch room so we could vacuum before we left. It's all there, unless Mary sold it at the flea market down the street for money. I have no idea." At this point we should probably go down ourselves, survey the damage, and send everybody back to Michigan; the party's over; but again we are stuck here showing the house to strangers and packing for the upcoming move, so what can we do? I send down a couple hundred dollars for a queen sized air bed, so they at least have something to sleep on, plus more money for supplies. A month later Mary finds a deal on beds, two singles and a queen for only $300, to replace the furniture that mysteriously disappeared. Well I can hardly say no to that. It's August, and the renters are coming in November, and they're going to expect furniture. So more money flows out of our pockets, while we keep all this on the QT, hoping Wendy's parents, and especially Jack, never find out what is going on down south.
But wait, there's more. John and Mary want to see each other, because they are brother and sister after all, but friends always tag along, and fights ensue. Physical fights, with the police involved. "Chad hit Dave square in the face." John reports in a panic, and given Chad's history, I'm inclined to believ him. But he sends us a picture of Dave's face and he looks just fine, so I don't know. More calls roll in, more accusations, more horror stories. Both children are going to wind up in a Florida jail if we don't do something. I put Wendy on a plane and send her down. She stays with Mary and Chad in the refurnished house, and tries to make it look like it did before, with similar blankets etc, since Jack will be down in October. We can only hope he doesn't remember what the place looked like; he hasn't been here in years. She also cleans up Chad's cigarette butts, which are everywhere, and trash in the porch room etc. These two are making a substantial mess all by themselves, almost as bad as the mess they went down to clean up. To make a long story short, Wendy tells the kids to leave each other alone. They live 20 minutes apart; it's best if they just don't see each other at all. Then she jumps back on a plane and returns to Michigan to show our house, which is receiving a good amount of traffic, but still hasn't sold.
In early August I review my credit card bill and see a charge for $1,500 from Bowling Green Ohio. I call, and it is a bond, paid by Mary, for Chad's release. The charges are driving without a license, speeding, marijuana, and drug paraphernalia. They paid the bond, left the state, and never looked back. The court date has come and gone, so you can kiss that bond money goodbye. Aside from the financial loss, Mary's lie is now brought out into the light of day. Chad didn't fly to Atlanta to meet her, they drove down together, and Chad was speeding through Ohio, with a Michigan plate - big mistake! I promptly call Mary and tell them to pack their shit and come home; I have had quite enough. They already restored the beds and dishes, so I don't really need them down there any more. Meantime John continues to regail me with stories that may or may not be true. "Mary keeps trying to sell us drugs. I think they are running a drug house out of Papa's home. I just thought you should know." I would have dismissed this out of hand, but after the Bowling Green incident I'm not so sure. Do you recall in the 1980's, new drug laws were passed at the federal level, that allow your home to be seized and sold at auction if tenants are using or selling drugs in your property? This is one of those idiotic ideas that comes out of republican think-tanks, and of course Reagan signed it into law as soon as the bill hit his desk. The real-world effect of this legislation is a decrease in rental property across the country, because fewer people are willing to take the chance, and the rest raise their rates to compensate for the risk. This doesn't cut back on drugs or crime, any more than Nancy's idiotic "Just say no" campaign; it just punishes landlords for things they have no control over, and often have no knowledge of. These conservative economists are clueless when it comes to the real world. Still, by the mid 80's the laws are on the books, and I am well aware of the consequences. If John does drugs in his apartment it's no skin off my nose, but if Chad is dealing, how would I explain the seizure and forfeiture of the Florida home to Wendy's parents and to Jack? All this is not very likely, but it's possible. We need to get Mary and Chad out of there right away. It's time to light a fire under their butts. I call Mary and tell her she needs to leave today, right now, because tomorrow I'm calling the Bowling Green police. This is a bluff of course. Ohio isn't going to bring someone back from Florida to face a marijuana charge. Ain't gonna happen. But they don't know that, so they gather up their possessions and head home. At the same time, Wendy drives down to florida to perform some vital reconnaissance. We don't need Jack, or the renters, to find anything illegal in that house. Fortunately there is nothing but cigarette butts, so she straightens up the house one last time, and gets it ready for the renters. It looks almost as good as it did before. Then, on a whim, she goes over to John's apartment, which he has recently vacated. "Do you really want to see it?" asks the landlord. "Honestly I think there is more damage than the deposit will cover." The entire place looks almost as bad as his bedroom here in Michigan, and that's after the landlord has picked up a few things. Red paint stains the carpet in several rooms, and much of the carpet will have to be replaced. "Yeah," explains the landlord, "it looks like they tried to paint the place, and it didn't go well. Why they used red paint, I'll never know. I'll tell you what, if you give me another hundred dollars I won't start a law suit." Wendy whips out her checkbook in a flash. After $1,500, what's another hundred? She gathers a few vital possessions that John left behind, then drives back home.
By late August our house is sold, though the closing isn't until October, and everybody is back in Michigan where they belong. The hideous Florida experiment is over. It's actually worse than I have described. I wish I could forget it, but I can't.
I have two advanced degrees, yet John convinced me to throw away my entire life savings, a little at a time, day after day, because his check, i.e. the Great Pumpkin, was soon to appear. In this chapter, and several to follow, I will try to explain to you, and to myself, how I could have been swept away with this madness.
At its inception, the check was only $2,000, a carefully crafted number that I would find attractive but still believable. "It's the last paycheck from my summer job in Florida, plus a little from my job here in Michigan, plus a check from Maggie's dad for us supporting her these past two months." he explained. "Maggie's dad is a nice guy and feels bad that she cost us so much money and didn't really help." Ok - that would be nice. Let's get the check, put it in the bank, and pay for a few things. But the check never came, and as the years rolled by this mythical check would grow to a staggering $38,000 before it finally evaporated into thin air. Read on and watch it grow, and watch me sit up, night after night, waiting for it to appear.
From 2011 to 2013, everyone around me, including my wife, thought I was nuts - and since my life savings is also her life savings, the damage to our marriage was considerable. John is to blame for this ongoing, methodical deception, but I am to blame as well, because I always knew better. I always knew the check was never coming. And yet, at the time, I saw no viable alternative. Even now, years later, I'm not sure what I should have done differently. "Kick him out on the street." was the unanimous advice I received from everyone I asked, and from everyone I didn't ask as well. Wendy's recommendation was a little softer, "Just don't give him any more money." But that would have put him in the hospital at the hands of his unpaid drug dealers, or in prison for ten years, since he would have to steal to feed his unrelenting habit. I realized this at a subconscious level, and maybe that's why I always gave in. Maybe that's why I always said yes. Or maybe I actually believed the check was really coming. I don't know any more. In any case, we find ourselves, at the dawn of 2014, with no job, and no income, and nothing in the bank, and 40 years of life remaining.
As I say, the check was small in the fall of 2011, but still sufficient to turn my head. John called almost every day and needed money for something; but he was always bringing the check to me, always ready to help us get through the hard times. The story would go something like this.
"Oh Dad I'm so sorry. The check from Florida got lost in the mail and they had to issue another one. Could you please give me $50 for them to send a new check? It's a reprocessing fee. And the check from my current job is held up in HR, so I still haven't been paid here at all. Could I have just a little for food; I haven't eaten in two days. And I need gas money to get to work; I don't want to lose my job. About $200 and I'll be straight. It's just for a while, and I'll bring you the check as soon as I can. I love you so much."
If this happened once you wouldn't think much about it, but it happened almost every day. There was always something. And sometimes it wasn't the carrot; sometimes it was the stick.
"Oh my God, I'm here with the police and they say I haven't paid anything on my traffic tickets or my reckless driving charge. If I don't give them $340 then I'm going to jail, maybe for a long time. They say I have to make the first payment right now."
With a hard-knocks education in the legal system, I now realize this story is both plausible and implausible at the same time. Yes, people do go to jail, sometimes for months or even years, because they don't have enough money. Chad, for example, had to spend 6 months in jail because he didn't have a thousand dollars. His crime was driving without a license; that's it. In contrast, a white rich teenager in Texas received only probation after killing four people in a drunk driving accident. How can we tolerate a system like that? The rich go free, while the poor sit in jail for months or years. The more you know about the criminal justice system, the angrier you become. The reason it continues on its merry way, trampling the poor underfoot, is because most people don't know how it works. It is something far away, like Iraq, and it doesn't concern us day to day. But the cost to society is enormous. Chad, for instance, lost 6 months of income, perhaps more, because his employer couldn't hold his job for that long, and now he has to find a new job somewhere else. Meantime Mary lost child support for those 6 months, along with Chad's logistical support babysitting Trent. Finally, the state housed him for 6 months, at a cost of approximately $20,000. Society, in aggragate, may have lost $40,000, because Chad didn't have $1,000, and a judge thought that made perfect sense. I say again, the closer you get too the criminal justice system, the angrier you become. If I wasn't in dire straits, I probably would have given him the thousand dollars myself. Think about that for a moment. Here's a man that might have assaulted my daughter, perhaps more than once, and yet I would consider giving him money to get him out of jail, because the system is just that bad!
So John's story was plausible, and yet it wasn't. You can't buy your way out of jail at 1 in the morning. The police would have taken him to jail, and he would have seen a judge the next morning. The judge would have ordered fines and costs be paid, and we could have maid our decision at that point. The legal system is a horrific juggernaut that crushes the poor and the minorities, but it is a process nonetheless. It moves step by step, and when John calls in the middle of the night and says the police will reduce a charge from a felony down to a misdemeanor if he gives them $280, well that's just not how it works. In reality he wants the money for a good time with his friends, including alcohol, and eventually drugs - and the best way to get it is to tell me it will hasten the arrival of his check or keep him out of jail. It's all a lie, evolving into a cascade of lies, and it all could have been prevented if I hadn't given him a license and access to a car. I keep coming back to that fundamental mistake; don't let them drive!
Along with money, I am losing sleep, night after night after night. He emails or calls at just about any hour asking for money, and then he sleeps during the day while I have to work. This is the beginning of my sleep deprivation period that lasts for almost two years. My blood pressure is typically 160 over 100, primarily due to irregular or inadequate sleep. Of course I have no health insurance, and can't see a doctor, but that is healthcare in the Land of the Free and the Home of the brave. Setting the physical effects to one side, my mind is constantly in a fog, which is another reason I tend to give him money at 4 AM, after he has kept me awake for three hours. "Fine, you can have $70, just let me sleep." As Paul Simon said, "It's a wonder I can think at all."
"Really?" I asked, "Even though the police video is blank, and they have no evidence whatsoever?"
"In a rich white suburb like this," he explains, "the police don't need evidence. A jury will believe two white policemen over a black teenager any day of the week."
And so the stark reality dawns; the legal system tramples the poor and the minorities because we, as citizens and as jurors, grant it the power to do so. We elevate the police to an almost god-like status, just as we do with soldiers; they can do no wrong. That black teen, who had a joint in his car and can barely speak English - well he probably could use some time in jail! Jim Crow lives on, but in a formso subtle that most of us don't recognize it. The bias is in our hearts and minds, and the legal system is merely a reflection of that bias, our "monster from the id."
For the sake of argument, let's say we dishout another thousand dollars (that I can't afford) for a trial, and by some miracle the jury acquits. There are more traffic tickets waiting in the wings, another ten points coming on line. John will almost certainly lose his license for two years, probably longer. It's just a matter of time. By 2012 he will be homeless with no license and no job. Despite his mental impairments he can see his future, and it isn't pretty. He sits parked in our driveway in shock. I talk to him, but he barely responds. Wendy calls him on his cell but he doesn't answer his phone. When he does speak his words are 100% futility. "I may as well throw all my shit away. It doesn't matter." He is referring to his clothes and bedding, which he has placed in the back of his car. I tell him he is wasting gas, and would he please turn off the car and come inside. I go in, hoping he will follow, but he does not. I come out several times and try to talk to him, but after an hour the only thing that has changed is that his engine is off. He still sits like a man who has witnessed a murder. I lean into the passenger window and start to cry. I can't help myself. "John please come inside and talk to us. I lost my brother, I can't lose you too." Wendy feels none of my heartache, since she is cleaning up the mess in his room, the mess that has to be cleaned up tomorrow before the closing, the mess that he should be cleaning up himself but is too immature to do so. Most of the work caring for this disfunctional man falls on her, not me, and it has always been so. She hates him, and would probably be happy if he went off and killed himself; meantime I can't stop crying. Neither one of us is any help to her, so finally she suggests I take him out to eat. Just a simple dinner somewhere, but time to regroup. Besides, I don't think he's eaten anything all day. John drives us to a nearby restaurant and we order some large, well-adorned burgers. Our spirits improve, and after the walk-through Wendy joins us at the restaurant. We eat a nice meal together and try to forget about today, and yesterday, and especially tomorrow. God help us all.
NFF: It's amazing what you don't see when you're in the midst of it. Going to restaurants was our coping strategy for over 12 years. We ate out a lot, spending money that we really should have squirreled away in a savings account - but this was our escape. After an entire day of managing John, Wendy just couldn't cook and clean, so the question of the evening was often, "Where are we going to eat tonight?" A voice kept whispering in my ear, "You know you're rewarding him for his bad behavior. You should really give him a peanut butter and jelly sandwich and call it a day." But another voice said, "Wendy deserves a nice meal out. It's not her fault John was a monster all day. You can't ask her to cook and clean, and you can't leave John home alone, and operant conditioning doesn't work on him anyways, so just take them out to dinner." And so I did, over and over again.
John was in a minor accident two weeks ago, and still his car, the Malibu, is not fixed. Enterprise wants its rent-a-car back, or wants money to extend the contract. Yeah, insurance is suppose to pay for it, but isn't, because the rental is in John's name, and he is not on the policy. No rentals for guest drivers. Well that makes sense I guess, but it really screws us over. I fax them my credit card, and Enterprise is paid up again, but still they won't give him the car back, or any other car, because they found drug paraphernalia in it. At the time I blamed his friends, but knowing what I know now, the shit could have been his. Either way he hasno car, and his car was also his home, so now he is truly homeless. He sits on the curb outside Enterprise, which is closed by the time we get there (Saturday), with a bizarre assortment of possessions around him. Clothes, and some bedding, and of course his orbital sander. He's homeless, but hey, he's got his orbital sander!
We stuff his possessions into the Buick and drive around in a daze. We just don't know what to do. He is suppose to start his new job tonight, or he'll surely be fired on day one; but no car, and no way to get there. We talk about renting another car, but everything is closed, except the outlets at the airport. They charge about three times as much, so a 4 day rental would turn into $400. I just spent $400 on John's last rental. So I nix that idea; we can't afford it. I don't care if he loses his job or not. We continue to drive around in a daze - don't know what to do. "Just drop me off at the park." he says in a pit of despair. Yeah, I'm going to leave him there sitting in the park, so the police, who have nothing better to do, can arrest him. I don't think so Tim. Then John has a thought. "Mary doesn't work on weekends, maybe I could borrow the Lincoln til Monday." Mary and Chad will hate the idea, but hey, it's not their car, it's mine, so whatever.
Mary's phone is broken, so we can't call her; all we can do is drive over and hope she is there. We go to Southfield, but no Lincoln. John is too shy to go to the door and ask where she is. We sit for a while eating our Wendy's, and I'm glad we did, because eventually Crystal comes out and tells us Mary is in the hospital. High blood pressure or something like that. Beaumont isn't far away, so we drive over. Crystal calls Mary in her hospital room to give her the heads up that we're coming, and Mary calls us to give us the heads up that she's pregnant. Yes, in the words of Loretta Lynn, "Pregnant Again". She's almost 8 months along. We don't say much about it, or make any verbal judgments, but Jesus, close your legs! Three pregnancies before the age of 21, four if you count the miscarriage. Of course Chad probably gives her no choice, but if she made one phone call to us we could get her out of that abusive relationship. All she has to do is ask.
Returning to our original conundrum, I tell her we're taking the Lincoln; she obviously isn't using it. She thinks they will discharge her tomorrow, but I'm sure they won't, so John could have it for a few days, and no harm no foul. We hand him the keys, and as soon as we do he races around the hospital parking lot like a teenage jack ass, and it just reminds me how sick I feel spending any money at all defending him against the reckless driving charge. He probably did it. Well for good or for ill, he's out of my hair, and I'm back in the hospital room with Mary. The doctor says they will probably perform a c section in the next couple days - just as I suspected. I leave Mary, hoping she will do the right thing and give this baby to the ladies, to grow up in a happy, healthy environment with his big sister Karen. She is talking that way today, and Chad is definitely on board. "We can't afford another child." he tells me. True enough; let's see if you can hold on to that thought when you look into his eyes.
Is this day of fun finally over? No. On the way home a pickup truck runs the light, smashes the front end of our car, and speeds away. It's a hit & run, so no worries about us getting a ticket, but the car is undrivable. Now we too have to worry about rentals and insurance and deductibles that we can't afford. Too bad we can't borrow the Lincoln, eh?
Gail picks us up and brings us home, and Jay has made a wonderful jambalaya. It's nice, after a day from hell, to have a great meal put in front of us. All we have to do is clean up. Other than dinner, the day has been shit! I wish my life wasn't a constant train wreck in slow motion.
Three days later Kailen is born, and no, Mary has no intention of giving him up for adoption. They are just going to struggle along, at my expense of course. Either that or I let my grandsons starve in the street. Gee I love my life.
|I opened a BoA acount and inserted the checks she said 4 to 6 days to clear i just dont know wat ima do in the meantime for gas and food and shit|
John has a certificate of completion from high school, but he never uses punctuation. Oh well.
It's early in the game, so I am still entertaining the notion that the checks might exist. I don't know yet that everything he tells me is a self-serving lie. So I reply to his email, assuming the above information is true. I am confused and disappointed, wondering why he didn't just put the checks in our joint account. That would have been so much easier, but he's always done things the hard way. Maybe he wanted his independence, like Mary. Well we know now - he didn't put the checks in our joint account because they don't exist.
|Making a new account, that's not the best thing to do, but it's better then driving around with paper checks for another week. At least they're in the bank, at least we're moving forward now. But you know I could have given you some money right away for those checks if they were in our joint account. That's what I've been trying to tell you for the past week. Now I really don't know what we can do in the meantime. I don't have any money, not even enough to eat for the next month. I was hoping you could help us with that. Here is what I want you to do. Add me or Mom to your account. Yes they can do that, and no they don't have to change the numbers. If I am on the account with you then I can use my other accounts and my history with the bank to get you some cash right away. They will give me $300 cash, even before the checks clear. But you have to add me to the new account you just created.|
Well he couldn't add me to his new account because the account didn't exist, because the checks didn't exist. After another three hours of email exchanges extending late into the night, telling me how cold and hungry he was, I'm sure I gave him $70 or so to get food and gas, and probably some alcohol too, though I didn't know that at the time.
The trouble is, this happened in some form or another, day after day after day. And yet, in the midst of the forest, I could only see the trees.
Just two days later John upped the anty by describing / inventing a loan that he was going to get, an unsecured loan for $20,000. At this point he is leaving the realm of bald-faced lies and entering the world of disinformation. He calls it a "starter loan", and has all the details of how and where he got it. Now he has the check in his hand. I suggest we meet at the bank and put it in together. It's too big for him to manage on his own. He agrees, but never shows. This is terribly important to us, so we wait at the bank for three hours, and finally give up when the bank closes. Later that night I send him this email. It includes my skepticism regarding the loan. In other words, I am finally seeing the forest through the trees, and yet we wander around in this forest for almost two years.
Another lie, referenced by this email, is his probation on Thursday. He is planning his lies ahead of time, to keep the money flowing. He's going to need $200 by Thursday or go to jail. I am being prepped, i.e. manipulated. I mention in this letter that I won't be able to give him $200 on Thursday, and yet I probably did. I'm writing this two years later, so I can't say for certain.
We waited another 3 hours today for you.
We called, sent text, sent emails -
It's hard to believe all this is because your phone is acting up.
Your brand new phone.
And this happens day after day.
I don't believe your phone acts up day after day.
I think you are hiding something from us.
Perhaps there are no checks, and there is no bank account.
Perhaps there are a couple of work checks but you didn't get your loan.
Perhaps you always have lots of friends in the car
and don't want to meet us with them around.
Jesus I really don't know.
I only know it's terribly unfair to us.
Weeks of just waiting around for you, and now I have no more money.
Especially after the last police encounter.
No savings, maxed out credit cards, nothing.
If I sign onto your account, and if it really has all those checks pending,
then I could get an advance.
Then I could help you.
But for now I have nothing.
Until I can join your bank account, it's $20 a day.
Even if you call and tell me you need $80 or you're going to jail,
it's $20 a day.
That's the way it has to be.
I can't help you any more, and you don't seem to want to help yourself.
If you can guarantee you will be at a certain place at a certain time tomorrow, we'll meet you there. We have to come into town again for another doctor appointment for Papa. So we'll be in town. But if we come to see you and you're not there, we go back home. I can't spin my wheels for another 3 hours waiting for you. You have to really want to do this.
Hope you are well this night. It's close enough to midnight that I gave you your $20 for the next day, for Tuesday. That's all I can do for Tuesday (unless we can join your account). Wednesday another $20, and Thursday another $20, but that's not going to be enough for your Thursday probation. I don't know what we can do about that. I can only tell you it's coming, and hope your checks have cleared by then, or we are joined to your account and can advance you some cash. I hope so, cause I can never sleep when you are tied up with the police.
Thanks to John's non-stop bleeding, and the move, and Christmas, and Beth's next college payment, I am out of money by December 23, and I don't get paid til December 31. At this point I do something I really hate - ask Jack for a short term loan. He's asked us for loans in the past - that's what a family is for - but I still hate it. Fortunately he has it to give, and that gets us through Christmas, which is not a holly jolly season for us.
It starts out well - a nice Christmas dinner at Papa's courtesy of Jack, although Papa is too ill to join us. Doesn't even open his presents. Nana says he ate some raw potatoes this morning and isn't feeling well. I never in my life had a desire to eat a raw potato. Go figure. Well we still have a nice time with Nana and Becky and Beth. We give Papa a quick Christmas hug, and move on to the Hanson's, where we are going to meet John. We wait, and wait, and this time he actually shows up. We talk for a bit, get all christmasy and optimistic, and then head up to Davisburg together. Our friends, who are already sharing their house with us, want to spend Christmas evening with us and as many of our children as we can round up. They are even postponing their intrafamily presents until we arrive. I can't say enough about these angels on Earth. So we're driving north on I75, with John in front, and his driving is so erratic that Wendy calls him twice. "Slow down. Settle down. You're going to get another ticket driving like that." John cannot handle any criticism in any form, so he turns around and heads south, away from anything that might become confrontational. And here's the amazing part; he almost has us convinced it is our fault. We are ruining Christmas for him with our bad attitude. We are ruining everything! It's hard to describe the magnitude of his mental illness. Still, the girls would really like him to come. We somehow want everything to be ok, especially on Christmas day.
"Where do you think you're going? Nobody's leaving. Nobody's walking out on this fun, old-fashioned family Christmas. No, no. We're all in this together. This is a full-blown, four-alarm holiday emergency here. We're gonna press on, and we're gonna have the hap, hap, happiest Christmas since Bing Crosby tap-danced with Danny fucking Kaye."
So we text, and call, and Jennifer finally persuades him to join the party. Once we are all assembled, we have a nice time opening presents and watching Jen squeal with delight. Christmas really is for kids. Well that almost saves the day, but there is more deception and frustration ahead.
John goes up to Flint to get his cash box, which he says he will bring right back to me - but he doesn't. I am once again waiting up all night, waiting for John. Around 4 AM I finally fall asleep through sheer exhaustion. So ends another day.
I was up most of the night, not celebrating, not watching the Twilight Zone marathon, but worrying about John. It's not the first time he's been out all night, in fact it's all too common. Most of the time he's just staying with friends, drinking, as I would learn later. But sometimes he's in trouble, and that's how the new year begins.
With just a couple hours of sleep behind me I get a call around 8 from the local jail, a collect call of course, one more way to drain my money. John is in jail and he's not sure why. He is to be released with no charges, he says; but when we arrive we learn there is a charge, a probation violation, because once the police pull you over they can't just let you go, especially if you are a minority. They have to justify the traffic stop somehow - something other than DWB. Unfortunately in John's case they can always find something legitimate. He was not suppose to have any contact with the Kulture boys, codefendents in most of his cases, but nobody can tell John what to do. Not his parents, not his teachers, and certainly not the police. He will do whatever he damn well pleases! So he continues to drive them around, and one of the Kulture boys was a passenger in his car, so there you go. Well it's not a serious violation, so they release him on a personal bond, but we still have to get the car out of impound. How many times have we done that? How much money have we given to impound shops all over Southeast Michigan? At least 7 different districts, someof them numerous times. I won't even try to do the math, it makes me sick. So once again the impound shop has its $160, and we have our car, and John is behind the wheel, and within an hour he receives another traffic ticket, which is also a probation violation (no police contact). John says his tire blew and he lost control, and he has the shredded tire to prove it, but the police have had quite enough of him, and are more than happy to write another ticket. At least they didn't drag him off to jail again. But the car is undrivable until we can get a new tire, which can't be done on New Years day, so he is coming home with us. I'm sure our friends won't mind if he stays with us for a day or two, especially since it's the holiday. Maybe we'll watch the game.
But there's no holiday for us. On the way home Chad calls and tells us Kailen died during the night. Yes Kailen was a premie, but he was given a clean bill of health just last week. Lungs clear, everything A-ok. This is one of those things that just shouldn't happen. We drop John off at home and go over to Mary's apartment. A couple of Chad's relatives are there, but it's pretty sparse, which is fine by me. I don't want a lot of company; I'm sure Mary doesn't either. She can't stop crying, understandably so. I just keep telling her over and over again, "It's not your fault. There's nothing you could have done differently. Somehow you will keep going for Trent."
But Mary's nightmare is far from over, in fact it is just beginning. The invisibel monster rises once again from the depths of our subconscious and moves towards Mary, slowly, leaving huge footprints as it walks. You know what I'm talking about by now, the legal system, our monster from the id. To gain some perspective, consider my friend Alan Franklin. A year ago his daughter died; she fell into their swimming pool and drowned. Isn't that a clear case of neglect? Didn't he do something wrong? Should we take his other two children away, just to keep them safe, just to be sure? We're only thinking of the children after all. No, there's no need for that, because Alan is middle class. He makes a good living as a software engineer. "We're sorry for your loss Mr. Franklin.", the police say, as they leave the house and look for some poor people to abues. People like Mary, who have no criminal record whatsoever, not one traffic ticket, not even a complaint fromthe the neighbors. People like Mary, whose son died of natural causes according to the autopsy. People like Mary, who are on state aid. Within three days they take Trent away, and only through the goodness of their heart will they allow Chad's relatives to watch him, so Mary can visit him once in a while. Within the span of one week Mary loses both her kids.
Instead of telling the story in pieces, month by month, let me cover it all here from start to finish.
I called three different lawyers and they all said essentially the same thing. "The State can do that; they have the power. It is at their discretion of course, but if they have decided to run an investigation then you just have to comply, or hire me to fight it; I charge $350 an hour."
Over the next four months Mary had to complete a series of parenting classes, at our expense, and at their convenience. Never mind if it interrupted her work schedule. She also had several meetings with court ordered psychologists and social workers. By the end of May they decided maybe it was ok for her to have Trent back, but she would have to wait for all the paperwork to be complete, which would take two to three months. In a rare moment of self-assertiveness, she said their was no need for the delay, and she could not be without her son any longer. The judge agreed, but there would still be regular surprise inspections until the paperwork was complete and the case was closed. This nightmare consumed most of 2012, along with John's nightmares that never seem to end. And of course we lost Kailen, and can only wonder what he might have been like.
You might be wondering how he financed a new, $30,000 car without me. I already decided I wouldn't cosign on any more cars for him, something I should have said years ago - so he had to do it by himself, and he did! This 20-year-old kid, with not quite a high school diploma, and no money in the bank, and no proof of income, successfully financed a new car. I can only assume dealerships are desperate to sell cars. And his credit was good, good because I had made car payments on his behalf for almost a year. All his financial interactions had been 100% positive to date, so his good credit and his exaggerated income did the trick. My only contribution was the first month's insurance payment, and even that was surprisingly low. He had dozens of points and a reckless driving charge, and yet his insurance was only $200 a month. How did he do that? Mary has a perfect driving record and her insurance is higher. I couldn't believe it. We found out later that he simply lied to the agent. Their system was down so they couldn't check. They believed him, and wrote the policy, and now he and his new car are fully covered.
Without the above analysis, without the 20-20 hindsight, you can see how I might have been led down the primrose path. Surely he has a good job, a high paying job; how else could he finance a car like that? Surely the bank performed its due diligence and verified his income. Surely the check that he keeps talking about is on it's way. I almost believed him all over again based on this little miracle, and I continued to hand him money day after day, waiting for the Great Pumpkin to appear.
But wait, there's more. State Farm eventually discovered his driving record and cancelled his policy. Naturally John continued to drive without insurance. God forbid he should get into an accident. And yet he did. Of course he did.
On January 18 he called in hysterics. Someone ran into his car from behind at high speed, then took off. The car is totalled; and remember, it is uninsured and 100% financed. I don't think he made even one car payment. The policeman at the scene assumed the car was insured; he never even checked.
"I know you can't drive a car off the lot in the state of Michigan unless it's insured," he remarked, "so I'm not worried about that. Your license is valid and it's not your fault, so no ticket. Here's my report; submit it to your insurance company and you'll get a new car."
We nodded, recognizing this as a zip-the-beak moment, because driving uninsured is a misdemeanor in Michigan.
Now John is on the hook for $30,000 with no car to show for it, plus the liability for the Malibu. At this point he is in a panic. He spins a tall tale about not being able to work, about not being able to make any money, but in reality he wants to socialize and drink with his buddies. With visions of his high-paying job dancing in my head, we go back to the dealership, just for grins, and darned if he doesn't finance another car.
No kidding. He still has no proof of income, no pay stubs, and almost $40,000 of unsecured debt hanging around his neck, and yet he talks Honda Financial out of a new car. He probably told them State Farm was settling the claim; it just takes time for the paperwork to clear. This kid could sell snow to Eskimos! All this took place in the back room with the finance guy; I wasn't there. From my perspective he was able to finance yet another car, debt notwithstanding, based on his wonderful job and his incredible income - so once again I was bolstered in my belief that the check was coming. I continued to support him day to day, waiting for this 5 figure check to arrive. If you think I am gullable, fair enough - but so are Ally Financial and Honda Financial. When John starts spinning his yarn, it is truly spellbinding.
No, I wasn't up all night on this, I actually did some real work for Gary. But I wanted to write this down and clear my head and go over the math.
One time expenses. There are just a lot of costs coming up that should only come once. This is what I would use roth money for. From now til the beginning of March:
So 5 grand would let us start fresh in March. This does not count the possibility of John's money coming in. If it comes, great! We'll celebrate! You can put roth money back in 60 days and it's like you never took it out. That's the tax law designed for rollover. So that's always a possibility.
I'm also not counting the 5 grand in back taxes we owe. Sorry, but that was a real shock to me. I thought all those deductions would count for something. I didn't understand the SEP tax, my mistake. I'd like to see how your parents' tax comes out first. If we get a refund of 2 or 3 grand, that could cut our bill in half. And whatever our bill is, we might want to take the payment plan, the IRS really doesn't gouge you too badly if you pay it off in a year. So I'm in a holding pattern on that one. Worst case we need another 5 grand to pay taxes. Best case John or parent money comes in, we don't owe that much, and we spread it out through the year.
So at the end of the day I suggest 5 grand from roth for right now. This would clear everything except some back taxes and is definitely within the limits of our contributions, so no new taxes or penalties etc. I can't have the next tax year come out as badly as this one!
Now for March and the rest of the year. Here are the fixed monthly expenses.
Gail buys most of our food and probably only breaks even between 200 and 300, so hoping to do at least 400 for her.
The credit card minimums actually pay some of the principal, so $820 is a bit of a worst case.
Fixed costs $3,840, which leaves $1,900, or $60 per day. We can spend $60 per day and break even. So we fill the tank, or get haircuts, or buy some extra groceries and things we need, or Beth goes shopping at Hot Topic, and that's it for the day! There is almost no room here for John or Mary expenses. They're going to have to find a way.
I still have to research bankruptcy. If we just blew off the credit cards that would save about $700 a month. Everything else we still have to pay. I don't know if that's a make or break thing. We could spend $80 a day instead of $60. Not a real big difference. I really like the convenience of credit cards, and wouldn't want to do without them for the next 5 years. But if they're maxed out then you can't use them anyways. Also not sure how bankruptcy affects our ability to get an apartment in a year or so.
Dorothy sent me a "what's happening" email, because we did not send out our annual Christmas letter this year. Here is my response.
Thank you for writing. It's always good to hear from a friend.
> Last I heard you were moving into a communal living situation?
Right. I'm sure you remember Jay, best man at my wedding; Wendy and I are staying with him and his family. We promised we would bring no kids with us, which leads to some of the bad things in my life, which I will get to below. We were allowed to bring our dogs, so it's a combined zoo: 4 dogs, 3.67 cats (some are indoor outdoor cats), 2 rabbits, and some other rodent I think, not sure. Gail keeps the house very clean so you'd never know there are so many animals living here. And of course we like animals too. Not unusual to find two dogs on the bed with us.
Gail is a 5 start cook. Puts wonderful food in front of us every night. Since we're eating her food, and not junk food or processed food any more, Wendy has lost weight without hardly trying. She looks great! I may have lost a little, but I don't weigh myself, so it's hard to tell.
Always glad to hear things are going well for you and your family. Our life is so awful I didn't bother sending out a Christmas letter this year. I wouldn't even tell you, but you're a good friend, and you did ask, so here goes.
The move out of our nice house in Troy was something we wanted to do some day, because Wendy and I don't need all that space and maintenance and expense, but we didn't want to do it so soon. I had no money for the mortgage, so simply stopped paying it. (You'll see below that my thoughts are constantly about money and jail to the point of a sick obsession.) We avoided the foreclosure by doing a short sale. This involves a lot of paperwork, but Wendy's brother is in realestate and helped us out with that. The bank forgave about $20K in shortfall. The move was a pain in the ass, lots of stress. From a big 4 bedroom house down to one room in a friends house. We gave away a ton of stuff, including some big ticket items. More than ten thousand in charitable donations, which I thought would help my tax situation, but it doesn't. I thought we'd come close with taxes, but we ow 5K, which I surely don't have. Anyways, giving away stuff, and a garage sale (which was a complete waste of time), and moving the essentials to our little room in Jay's house, and putting the rest in a 10 by 25 storage unit, which is fully packed. Maybe Wendy can send you a picture. The unit costs $100 a month to rent, a necessary expense for now. So here we are in a commune again, and I like communes, always have, but it's not like ours, because we are obviously subordinant. We aren't equal players. We can barely afford to give them money for our food, and certainly don't own the house equally. So we are always mindful that we follow their rules and procedures, and we try to stay out of their way. As I say, it's not the same as the arrangement we had in Illinois. Wendy and I have decided we'd really like to move into our own little apartment in a year or two, but can't see any way to do that financially. So this is our situation for the foreseeable future.
The job is the same. I work from home, which is good because I spend two or three days a week trying to manage my two children. Wendy spends 5 or 6 days a week doing the same, or helping her parents or my mother. Rarely can I put in an 8 hour day; my dependents keep me much too busy. Sometimes I work on weekends to try to make up. I couldn't take a 9 to 5 job now, or a job across the country, even if it were offered. My kids and parents would fall apart without us. As for money, the increase in salary, which would surely come, would be offset by the extra expenses of an apartment and utilities etc. Google is courting me again and I don't know if I should even waste their time or mine. The math just doesn't come out that much better. There isn't any job anywhere that would make enough for all my expenses. Too much consumer debt, too many ongoing expenses, it just isn't possible. So I stay with the job I have, which keeps us near the people who need us, and lets me work from home.
Beth is at Central Michigan University and doing well. It's such a joy when she comes for a visit. Her happy personality has not been destroyed by life. "Cheer up Dad, I'm here!" And that almost works. But then she goes back to school and I realize that her college fund might last two years, and after that I don't know what I'm going to do. I haven't told her any of this, I really don't want her to worry about it.
Mary's life is a nightmare in almost every way. In September she got a section 8 apartment for $100 a month. Great - who couldn't afford that? As it turns out, she can't. I told her at that time that if she didn't find a job, any job, she would be back in the squaller of her friend's crowded house in 6 months. And that is exactly how it is playing out. It's worse than that though, because her state aid, I guess they use to call it welfare, they have other names for it now, well it doesn't work half the time. She takes her card to the grocery store on the day of the month that it is suppose to be recharged and it doesn't work. It just doesn't work. No money. So she spends the next 8 days sitting in DHS offices trying to figure out why it doesn't work. What has gone wrong now? During this time she can't work (if she had a job), or look for a job, or go to her work placement program, because she is battling bureaucracy. And if you don't go to your work placement program they kick you out of the system and you lose your aid. There is no way to win here. I realize Romney doesn't worry about the poor, because they have a "safety net" - from which I can conclude he has never been poor. So most of the time Mary has no income of any kind, and naturally she asks me for money. "My babies have no food, no diapers, etc." What am I suppose to do with that? And speaking of babies, perhaps you have lost count. She had the first one at 16 and thankfully put her up for adoption, but the next one Trent she kept, and then came Kailen in October. Two babies, and Mary is a great Mom, she's just wonderful with those kids, but there's no money. I'm sure if she wrote you she would tell you how awful her life is too. It got even worse on Jan 1 when Kailen died suddenly in his sleep. Nobody should have to wake up in the morning and see their son dead in the crib. We did the funeral as cheaply as we could, but all funerals are expensive. Meantime her state aid is still not working, and she has no money for food or utilities or rent. No doubt she will be evicted in a couple months, just as I predicted back in October. But this time I have no place to put her. Maybe she can go back to her friend's house, but she told me, "I'd rather live in my car." Things must be bad over there.
John has a good job, but it involves driving, lots of driving, and he has no license, dozens of tickets, and multiple warrants for his arrest. Most of this crap is his fault, some is not. Meantime he is still borderline homeless, staying in the Hanson's livingroom when he's not in his car. He can't come here. He recently moved into Wendy's parents' basement, but her brother Jack is also there, and I worry about the John/Jack interactions; they really hate each other. They have almost gotten into physical fights in the past. I worry every day that I'm going to get a call about them fighting, and it doesn't matter who started it or the circumstance, John would go to jail because he already has warrants.
Speaking of jail, he's been there, but not for long. The Troy judge hates him, and wants him to spend a year in jail if possible, wants his license revoked, wants him destroyed completely. And she has all the power; well almost. In one hearing she sent him to jail with a $2,500 bond. We couldn't dream of paying that much money, so off he goes. By the end of the day the jail has reduced his bond to $50. Apparently they can do that in some cases. The jail is crowded, and they don't have room for people whose only crime is traffic tickets, so they kicked him out. Meantime we still have bonds and fines to pay, and the car is always impounded, another $250.
As for John's pay, we haven't seen any of it yet. It never makes it to the bank. I don't know why. One time he was so desperate for money he asked for all his back pay in cash. $15,000 in a cash box. But the police stopped him on the way home and arrested him, and confiscated the cash. They probably thought it was drug money. It is still in a police station somewhere, pending an investigation. So months of John's hard work is locked away, and we can't go claim it because if John sets foot in a court room or police station he will be sent back to jail. The bottom line is he works about ten hours a day, has received no pay, and so I have to keep feeding him and his car until this is resolved. And there are also myriad legal expenses. Probation costs, drug testing, legal expenses, and so on. He'll call me on the phone and say "I have to have $100 for drug tests, and if I don't do them the probation officer says I will definitely go to jail." What am I suppose to do with that?
Wendy's parents are in ill health. They might do all right if they took their meds, but they don't. They just forget, or can't keep track. Wendy really should go over there 3 times a week, but is too busy with John and Mary to do that. She just lays in bed and cries because she doesn't have the time or resources to help her own parents. To top it off her dad fell down the basement stairs recently. Wasn't hurt too badly, thankfully, but ideally Wendy should have stayed with him for 3 or 4 days, preparing meals etc, and she just couldn't. Meantime my Mom has her own health problems, and she fell too. Wendy went over to Lansing for two days to help her. That's all she could do, then she had to come back and deal with Mary and our latest car accident. Sweet Jesus!
All this has been a terrible strain on our otherwise beautiful marriage. Everyone on the planet, including Wendy to some degree, thinks we should not give these kids another dime. Let them float around homeless and hungry, or in John's case, let him go to jail. Wendy isn't being cruel; she's right. I don't have the resources to save them, any more than I have the resources to feed the starving in Africa. It's just a bottomless pit. Well we probably don't have to argue any more, I've spent it all, plus about $60,000 in debt, so there's nothing left to do, and nothing left for Wendy and I to argue about. We just lay in bed and hold hands and cry. Don't think we ever have sex any more; everything is just too sad.
Sunny,the yellow lab, has been sick for a while now. Loses everything she eats. We took her to the vet, lots of tests, antibiotics for some internal infections, plus other pills, another thousand dollars. Her infections are gone, but we have to feed her special low fat low allergy dog food in small amounts at regular intervals, like a baby. Even with that she still throws up every 3 days or so, at night, on the carpet. So, going back to our subordinant position, my animal is destroying Gail's carpeting and I feel obligated to do something about it, or compensate them in some way, but I can't.
Wendy recently had a 6 week long period. My Mom had one of those; it was cancer, or precancer I guess, and after a hysterectomy she was fine. Naturally she urged us to go to the doctor right away. We did, and so far got away with $175, but if an operation is necessary then it's game over - we may as well file for bankruptcy. Why couldn't we live in a civilized country with universal healthcare?
Well I'm sure you can see why we didn't send out a Christmas letter this year. There's just nothing that anybody wants to hear about.
Wendy just bought another lotto ticket; let's see if our luck changes.
John will spend almost a year in jail, though not in one unterrupted span. That is fortunate, since he summarizes the situation as follows.
"In Macomb County jail you can just get by, you can just survive, but in Oakland County jail you will slowly starve to death without commissary."
Commissary is an internal store, a company store if you will, sometimes charging company prices, where inmates can purchase snacks, hygiene products, stamps, envelopes, and other personal items, provided somebody on the outside has put funds into their account. John says these snacks are essential in Oakland County, because the food, if you can stomach it, is insufficient to support an adult. That violates state law, but nobody is watching. In the 21st century, in the United States, people are locked in cages and slowly starved to death, sometimes for traffic tickets. This situation is tolerated because most people stay in the county jail for 90 days or less. You're going to lose weight, John lost about 50 pounds in three months, but you will survive. However, some people are locked up in Oakland County for over a year, and as John says, I don't know how they would survive without help from a friend or relative.
This situation was compounded by the fact that John was often unable to eat the food. Only later did we learn why. His binge drinking had damaged his liver, and digestion was a hit or miss process. Furthermore, because the staff did not understand his condition, they would sometimes place him on a restricted diet, low oil, low salt, low carb, etc, and inmates who are so restricted cannot receive commissary. So his first 90 days in jail were very bad indeed.
It seems odd at first that a judge would sentence someone to 90 days for traffic tickets, but judges hate people who deliberately defy the law, and John definitely fits into this category. No license, no insurance - drive anyways. Probation meetings - I don't have time for that shit. Stay away from the Kulture boys - they can't tell me what to do. This attitude pisses off the judge, and puts you at the top of the sentencing guidelines for sure. Thus on March 26 John was sentenced to 90 days in Oakland County jail, 90 days filled with vomiting, headaches, and constant ridicuel, day and night, from his cellmates and guards, which is the standard and universal response to homosexuality in that setting. During this time John called almost every day, collect calls that are not cheap. This, combined with commissary, drained my account rapidly, though not as much as wehn he was on the outside, not nearly as much. In any case, I felt it was necessary to supplement his food, as described above, and to keep his emotions on track as best I could. Occasionally I would write a letter, and even include some pictures from home. Here is the first letter on March 24.
Here is my first letter to you in Oakland County jail. Yes, you can call me, but it's almost $10 for a fifteen minute call, so we just can't do that every day. A letter is only 50 cents, so that's better. Use some of your commissary to buy envelopes and stamps and write us back.
It's kinda quiet without you. No calls or texts or emails in the middle of the night. I don't especially want you to be in jail, but I can sleep again, and it feels good.
Your hearings, Tuesday and Friday, are badly timed. Both days Mom already committed to taking Nana and Papa to the doctor. We already have the appointments. We might be able to come to the first case, but definitely not the second. If you don't see us out in the audience that's why. We haven't forgotten about you.
You know that I have a certain confidence in you, that you'll be all right. I imagine you look back and wish you'd done a couple things differently, I suppose we all do, but you'll be all right.
We're still trying to figure out Sunny Day. I think she's getting better, but really really slowly. She can eat Wheat Chex now, most of the time, no other cereal, has to be Wheat Chex, and you have to put a little peanut butter in it or she won't eat it. Then her snackies and her pill at night. Dogs can be a lot of work and worry just like kids.
Beth is here for the weekend and says hi. She has a little part-time job at the school library. It's her first "real" job (besides babysitting and things) and she's pretty excited.
Mom is walking around the house holding her mouth. Her old filling came out on Friday, too late to call the dentist, and we can't do a thing about it til Monday. So she's eating apple sauce and pudding and things like that. We really didn't need that. But we'll get it figured out next week.
Mary is Mary, you know, same old, always short of money, still ooking for work, etc.
That's all for now. We'll try to write semi-regularly until this is over.
Love, Mom and Dad
The only silver lining is the quiet and pain-free end that we could provide for her, instead of the months of suffering that were in her immediate future. Why can't we do that for ourselves? Because we're idiots! A year from now, both Wendy's parents will die rather unpleasant deaths, while we stand by and watch. Yes, we can administer morphine, which helps to some degree, but there are times when you just need to bring down the curtain. Kevorkian was a nut-case, but he was right. Don't fear the reaper.
I'm sure we'll tell you half of this on the phone, but this is your Easter letter. Gaill cooked the entire day, as you might imagine. Not just the standard things but unusual things like grilled brussel sprouts and sliced beats and mushroom green beans - things that most people don't like, but Gail and I like them, and you would too if you were here, because you like everything! Remember when we would eat rutabaga, just you me and Aunt Sara. So wish you were here.
Ralph and Barbara came, with their hound dog Lucy, the one with the big floppy ears down to the ground. And Barb (Jay's sister) came, And Tory was back from his trip east, and Beth was here. Mary was invited but spent the day at Kendra's. I think that was everybody. Not a whole lot of people, but just enough.
Tory started watching golf of course, in the basement, but pretty soon he talked everyone else into watching it upstairs. It's the Masters, which is the big golf game of the year. Like the Superbowl in football. Even people who don't care about golf will watch this one. So that was running in the background most of the afternoon. I actually think it's kind of interesting, if someone describes it all to me. Like the shot that goes way off in the woods, oops.
Beth is headed back to school. She'll be out in about a month though. They get out real early. Don't know what she's going to do all summer. She's trying to get a job at Troy Lanes, just something to make a little money and pass the time. Of course Mary is still jobless and kidless. Her next court date is coming up soon; hopefully they will give Trent back to her and that nightmare will be over. Let us pray that there is at least one judge out there with a brain in his head. Some day you should become a lawyer, or a judge. You'd be better than most.
Mom and I are spending lots of time doing bankruptcy paperwork, which isn't hard, it just takes a while because we have lots of credit cards and things to document. After the bankruptcy is done I have to figure out my life and my money situation - and it probably means I have nothing left at all for you or Mary, so the very first thing we need to do when you get out is go to the Detroit bank and get that all figured out - and then your work checks and your Flint checks and so on. We really need to do that the day after you get out.
It's cool out, good for jumping on the trampoline, then work, then help Mom with paperwork, then I have a work call at 7:30. Do you believe it, 7:30? Like these guys have nothing better to do in the evening then to keep working. And it's right over top of Jeopardy. Doesn't anybody else watch Jeopardy? Well … you do what your boss says. I'm sure you know what I mean.
Let's try to keep our calls short and our letters long. Remember we may be in Lansing later this week.
Love, Mom and Dad
In preparation for the move, Tory bought Jack's van. He has been without a car and relying on others for a long time. In fact he's been borrowing Jay's car; more imposition on our friends. Now there will be two working cars at the Waymount house, which is always a good idea in Michigan. We agree to borrow each other's cars if ever it becomes necessary to do so. The sad adumbration here is that we (myself, Wendy, and Tory, he has to take some responsibility for this as well), also agree to let John borrow his van from time to time, especially when Wendy has to spend entire days across town caring for Nana and Papa. Yes, we keep finding ways to let him drive, when I should be doing exactly the opposite. How stupid can one human being be? It makes me sick to write it down now, years later, and it only serves to reaffirm the most important point of this lengthy tome - don't let them drive!
Oh - his Honda? It got repossessed while he was in jail. Obviously he wasn't making the payments. And even John isn't going to talk a bank into a fourth car loan, with the last three sitting in default. He's good, but he can't part the Red Sea. So for almost a year he borrows our car, and Tory's van when our car is unavailable. But we'll get to that later. For now, the letters and phone calls and visits continue.
It's Monday morning now. I hope these letters don't take too long to get to you. Beth is here, she came back on Friday. School is out for summer; they end real early over there. She came home with all her stuff. The car is packed. Seats down, stuff all the way to the ceiling, stuff in the passenger seat up to the ceiling, and two bikes hanging off the back. All she can see is straight ahead and her left mirror. Good thing she didn't pass a Clarkston policeman, they would have given her a ticket for sure. So now we have to find room for all that stuff in storage, she will need it again in the fall when she goes back to school. It's a big room, 10 by 25, but it's full up to the door.
We had turkey tacos last night, which were delicious as always. I tried not to eat too much but I probably did anyways. And today (Monday) we're all going to have taco left overs I'm sure.
Tory bought the van from Jack, and it is sitting in our driveway. He's going to try to fix the back hatch, so we can use it to move stuff to the Waymouht house. I can't afford to hire movers any more; it's all on us.
Love, Mom and Dad
Saturday, Mom meets with Nan and Papa for Breakfast at the ham place. Then she reads some medical paperwork to Papa about his eye operation. I talked to you about this on the phone, I still don't know if it's going to happen, but probably it will. Hope it helps; everybody wants to be able to see. Then Mom went up to see Mary to give her a printer that she can use for schoolwork but she wasn't home. We still haven't gotten hold of her. I think she is having phone problems. She dropped hers in water, did we tell you, Lordy, the only thing insurance doesn't cover, she dropped it in water. So we had to pay for another used one, money that I definitely can't afford, but we did that and maybe it's not working either or she didn't get it set up right or I don't know. Well we'll figure it out I'm sure. I know she needs the printer by Tuesday cause some sort of paper is due.
Sunday, Mother's day, Anna made breakfast, Jen made lunch, and Beth made dinner, so the Moms didn't have to cook or do anything. Breakfast was hash and eggs, lunch was grilled cheese and ham and chips, and dinner was of course Beth's crispy beef and broccoli. That really is a yummy meal. Other than that, not too much. Mom watched West Wing, Tory watched golf, I built more things out of buckyballs. Beth found her set and added it to mine, so I can make even bigger and more complicated structures. We'll send you some pictures.
Beth is taking a geography class on-line, and she had to write a 700 word essay about temperature variations on the Earth, and then take a 50 question test. She called me up from the basement, "Dad, help me with some of these questions." Oh she knew most of them, but there were some she didn't know, so give me partial credit for her A, thank you very much. Course I got one wrong that I'm still annoyed with, cause I really did know it, but it was out of the blue, and she got her A anyways, so whatever. It's funny to see her taking classes on-line - it's like - why go to school? Save money on the dorm and food and all that. Well whatever.
We ate outside on the umbrella table on the front porch. Seven months I've been here and I never did that before. The funny part of eating outside is Mama Cat. You know they have three cats inside, and another three or so outside that they feed and take care of. Well Mama Cat hardly gets any attention, so when someone is out she loves pets. All through the meal "pet me pet me pet me pet me." If I stop petting she puts her two front paws up on my leg to get my attention. She's really a little cat, hard to believe she cranked out all those kittens. Six in the last litter. She just looks to small and frail to do that.
Speaking of cats, Poof went flying across the dining room table and knocked the ceramic cabbage cookie jar onto the floor; broke it in a zillion pieces. So I guess that's normal. He will climb up onto the shelves and deliberately push the breakables onto the floor. He is truly demon possessed.
Love, Mom and Dad
Take an average American, not an (insert your favorite minority here), but a middle class American, a family man with a wife and 2.3 kids and a dog, and give him absolute power for a year or two, and he will likely become a monster. It has always been so, it will always be so.
This is one of several stories that John told me after he was free from the clutches of the legal system, and although he lies with practiced ease about everything, in this case I believe him. The guards decided to put the floor on lock-down, and were turning off all the tv sets. One of the inmates didn't appreciate the interruption in "the big game", so he spit on a guard. the "extraction team" was called in. this is a group of select guards who are basically controlled sadists. they took the inmate off to a room without cameras and beat him into submission, but carefully, so the damage would not be permanent. John overheard one of them laughing after the beating. "He doesn't have a face any more." the others chuckled in camaraderie as they walked away, waiting to be called again when needed. the inmate was not seen again for over a week. By then his remaining injuries, still considerable, could be explained away as a fall onto the cement floor. He has also received, in the interim, a new charge, assault on an officer, a felony that carries several years in state prison. Who is the judge or the jury going to believe, four policemen in their smart blue uniforms or a convicted criminal? Who would you believe if you were on the jury? So you see, the monster comes from us, from our collective subconscious. We loose it on the dregs of society, the people we don't like, and the monster literally tears them limb from limb. The only way to combat this scourge is to put cameras in every room of every jail, local, county, state, and federal, and run them 24 by 7, operated by an independent agency, with footage archived for at least a year. This is the most important reform we can make to the legal system that is technically feasible today. Torture and abuse take place in secret - let's bring it out into the light of day.
John admits that this scenario is not likely if you do exactly what the guards tell you, every minute of the day, and if you have parents on the outside watching, and writing, and visiting, and if you have a good lawyer who makes an appearance now and then. Not likely, but still possible. One inmate was severely beaten because he tripped and fell in front of a guard, fell because of his weakened state, fell because he had been malnourished for many months. So it could happen to anyone.
After ten days of silence I could picture John's call in my mind; I played it over and over again as my blood pressure shot through the roof. Between his sobs, "Dad I can't tell you what happened because these calls are monitored; I can only tell you it was horrible, and I'm going to be in prison for the next two years." And it almost happened just that way.
Before he had seen the inmate spit on the guard, before he understood the nature of jail, John told a guard to fuck off. And why not - he'd been saying that to his parents, his teachers, his principal, his therapists, everyone in authority, without consequence, for his entire life. So why not? The guard stopped in his tracks and pushed the emergency button on the wall. The extraction team came out of hiding, thirsty for blood. Then, at the last minute, the guard decided it was just profanity, and put John in isolation for ten days, with no beating and no new charges. This act of mercy probably saved my son's life.
After ten days of isolation John is back, though he has been moved from blue to gray, with the semi-violent inmates and the tighter restrictions. This explains the gap in time between letters, almost two weeks. And it explains why I will never be the same again.
This letter is from John to us, a rare event indeed. It sounds wonderful, and I think he is sincere at the time of its writing, but all addicts are the same, and words don't mean a thing. He will receive a DUI within two weeks of his release, so no, nothing has really changed. But here is his letter, telling us that old things are passed away, and behold, all things are become new. If only…
Dear Dahlke Family
I'm here watching Wendy Williams (if that's not gay IDK what is) and got bored so I decided to write yall. I was thinking how much I really missed you guys. And it makes me so sad. We need to do more family things together when I get out. I don't care if it's just a family group call. We just need to do something. I feel so distant from you at times and that makes me really sad. Even before I came here I felt this way and at times I'd drink instead of coming out of my shell and my depression would also cause dangerous amounts of drinking. But now I'm ready to talk about it out loud. My main sadness was that I was losing Mary as my friend and my sister. The stress of money and work etc. But I learned to open up is the best way to solve these problems. You guys have no idea how happy it makes me when you guys welcomed me and Mary into your lives. I know we've been through some stuff but I want you to know how much I really and truly love you. You and mom gave us a life some have never seen. I'm truly blessed to have you guys. I get a letter from you guys and it makes my whole day. God blessed me with a great family and I just wanted you guys to know that.
Beth-- I know we didn't used to get along. But the fact that we do now makes me happier than ever. I hope we can hang out more this summer because I miss you so much and always think of you. Lots of love.
Mary-- You are the one I've always looked up to and the one I could go to when ever I needed something. And I feel that I've severely damaged our friendship. And I want you to know that I'll do what ever it takes to have you back. I love you very much and I miss you a lot. I'm so glad you and Trent are back together. That must be just everything. Love you lots - hope to see you soon.
I love each and every one of you very much. And can't wait to see you soon. I miss you guys.
Love John xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
If you come home drunk one more time …
If you ever drink and drive …
If you ever start using drugs …
If you ever bring drugs into our home …
If you ever lie to us, steal from us, manipulate us …
If you ever put us in danger …
Perhaps you've been there; perhaps you know. I'm not saying it's right or wrong, I'm just saying it happens. It's very hard to kick your child to the curb, especially if that action is likely a death sentence. It is essentially the nuclear option, and I guess I was never willing to push that big red button, although all around me were recommending just that. "Save yourself." they advised, and who knows, they may have been right.
June 13, just another day, John needs the car for something, some emergency, he has to get to probation or he'll wind up in jail, oh and he needs $60 for drug testing or some such, so off he goes, and what does he do? Drink with his friends, and this time he gets caught, and here comes a DUI, plus DWLS plus marijuana. Give me some credit - I have no intention of posting bond. He can go through the process from arraignment to sentence, and let the chips fall where they may, but someone else posted bond for him. His friend's mother or who the hell remembers now. It was only $300 so she posted it, and now he's free, and what am I suppose to do with that? We take him back into our home, and once again get our car out of hock. There's another $160 pissed away.
A month later we find ourselves in a Centerline courtroom with a court appointed attorney, who is absolutely stellar. I call him the K lawyer, having a long last name that begins with K. You must realize that most appointed attorneys are borderline worthless, or they are simply overworked and underpaid. One of them stood by John in Troy and said nothing, as though she could not comprehend the case. But the K lawyer got all the charges dismissed except for the DUI. And he charged us such a small amount for his services it almost isn't worth mentioning - which is in stark contrast to what he charges if you hire him directly, because he's that good. He knows these people can't pay, and he actually cares about them. This may not turn out so badly after all. But John almost blows this sweet deal by hiding in his room instead of going to court for sentencing. He always has some lame excuse why he can't go to court, an excuse that the judge rarely accepts. You'd think he had watched Lost in Space, "My back is extremely delicate today." Sometimes he's as dumb as a box of rocks, but that's part of his disability, isn't it. Sentencing doesn't take place for another year, but the K lawyer is there, and the judgment is extremely light, so stay tune for that.
Things go well at first, but Tory goes downhill fast. Addictions don't stay in a steady state for long; they either get better, with a lot of work, or they get worse. A high functioning day is, for him, a day that he is able to walk down the stairs and out to his van to go to the store to get more liquor. Needless to say, he doesn't mow the lawn; we're lucky if he puts his dishes in the dishwasher. But he still pays his half of the rent and utilities every month, so that will have to do.
If you rewind about ten years, Tory, Jay, Maryellen, and I all worked together. We are still close friends, and Tory drove out to Virginia to visit Maryellen just six months ago. He is talking about taking another trip out, but this time he can barely walk. No way can he drive 700 miles. So I write the following letter to Maryellen.
In case you aren't in the loop, Tory is living here with us, in Jay's old house. I'm glad to have him, but I'm letting you know he doesn't look good. He is very shaky, to the point that he can barely stand up. He almost tripped going down the stairs this morning. It's possible that this is a serious detox reaction, as he tries to dry out. He made it to his van and ran a few errands, but those errands included, I'm sure, the purchase of more alcohol, which starts the 4-day cycle over again. Whether he's drunk, or drying out for his next stint behind the wheel, I've never seen him look this shaky before.
He says you and he are coordinating a trip out, a visit. Is that true? Was it your idea or his? I don't think he's safe to drive 700 miles on his own. I know he did it before, recently, but he just doesn't look good now. You might want to come up with some magic reason why he should postpone. A family reunion - somebody died - somebody's coming home from Iraq - IDK. Just thinking of Tory and his safety.
Meantime John continues to lie about his checks, but the lies keep changing, to keep us off balance. "Rotate your frequencies; the Borg are beginning to adapt!" His most recent fabrication involves some middle manager in his HR department who wants to send everything by direct deposit. It's a great idea; he can't lose the check, and the police can't confiscate it. The money will magically appear in his account, which I have access to. The trouble is, John knows I will like the idea; that's why he came up with it. It is tailor made for me. And naturally there is some kind of reprocessing fee. Surely I will pay another $200 to get $10,000 in the bank. So on we go - but then the transfer is taking too long. How to explain the delay?
You know, that old Grinch was so smart and so slick, that he thought up a lie and he thought it up quick.
"I think he has the wrong routing or account number. That's why it's not going through. Send them to me again and I'll confirm."
Yes, confirm with the guy that he submitted the money transfer, and that he has the correct routing / account numbers. I'm including them below. The best we can hope for now, with the weekend coming up, is Monday.
Looking to the future, do you finally have your salary direct deposited into your account? I don't want to go through all this again with your next pay check. Things just have to flow smoothly from here on out.
Refering to the HR manager, who apparently is having a hard time with the direct deposit:
I think we, you and I, should meet with this man tomorrow and make a plan. I know it galls you to have your parents involved. You just hate it. I understand. Mary and Beth are the same way. But you are in trouble now exactly because you didn't let us help you earlier. You didn't let us into your world. We've never seen any of these checks, or cash, or whatever. It isn't working to keep us out of the loop. So make an appointment with your HR dude tomorrow and we'll all go and figure it out. If he can guarantee he'll put the check in my hand by Friday, then maybe I can come up with the reprocessing fee. The check will come in time to make up for it. But we have to all sit down together and figure it out. We can't wait til August to get your money. So please call him and see if we can meet tomorrow.
Ok - the direct deposit story has run its course - time to change frequencies again. There is some kind of technical problem, and direct deposit just won't work, so now he wants to get all his money in cash, but that entails another reprocessing fee.
Direct deposit is not rocket science, I'm sure they can get it to work. Don't try to get your checks reissued in another form at the last minute. Don't change plans again. That just slows everything down. Remember the money from Chicago? seems like we changed that one every two weeks to try to hurry it along. We were impatient. "I want cash, I want checks, I want direct deposit, it's not happening fast enough." - and every time we switched it cost $200 processing fee and set us back another two weeks. So it took forever to get that money. Remember? Sometimes you have to set a course and stay with it, and don't change things. It will come.
Did you thank mom for the cash? If not then send her a text. She would appreciate it.
chicago money? Yes, another one of his lies, a check from Chicago that allegedly went into his Chrysler auto loan. Had to - or he was going to jail. That was his story anyways. So I'm sure the Chicago money never came, but I spent a lot of money trying to get it to come.
This game just never ends. Oh it does end eventually, about a year from now, when the Great Pumpkin finally reveals itself as a black cloud of deception and evil cruelty, which has always been its underlying form. An addiction will turn anyone into a monster; all addicts are the same.
It starts with a call from John at 4AM. He's in the hospital. We go, and there's nothing obviously wrong with him except for a headache. They say he was "freeking out", and had to be restrained. Low blood sugar perhaps, combined with fear at the sight of the police. But why were the police called anyways? We still don't know. The only good news is he wasn't arrested; didn't even get a ticket. The doctors are as confused as we are, so they release him. John directs us back to where the car should be, but it's not there. It is half a mile over, in the clutches of our old friend the impound lot. There goes another $160. Should I mention that I'm flat broke, and the month still has 3 weeks left!? Well that's another story, though it's highly correlated with John's legal and logistical shit.
We walk up to our car and notice the back bumper is smashed, the axle is bent, and the left rear tire is flat. It was obviously hit from behind, and became undrivable at that point. This happened after John was taken to the hospital. Someone hit our car while it was parked on the side street, and at that point they had to take it to the impound lot, because nobody was around to claim it or have it towed. Another accident, another insurance claim, another deductible; we have about 6 of these per year. virtually all of them are not our fault, which makes the math even more mind-boggling. What are the odds? How can any family have such incredible bad luck with cars? How is that even possible?
The tow truck comes and takes Lacey over to The Collision Shop. (Yes, we name all our cars, don't you?) Unfortunately the shop owner recognizes us right away, since we have been here many times before, and even the Enterprise agent knows us by name. Sweet Jesus!
For insurance reasons John can't borrow the rent-a-car, the way he use to borrow ours (almost daily). So he is without wheels, and still has commitments every day: work, rehab, and sometimes probation. He also has no money. The checks he put in the bank, huge checks that would solve all our problems, have disappeared into thin air.
We now know that most of his "commitments" were manufactured, just so he could get his fix with his friends - and his checks were also fictitious. Are we having fun yet?
In reality, John's license was not valid, having been yanked some 9 months ago after the reckless driving charge. But the police, in their infinite wisdom, would not charge him with DWLS for another three months. They had to perform their "investigation" first. The DWLS violation would come in the mail in November, along with yet another reckless driving charge. Yes, someone hit our parked car from behind while John was in the hospital, and the police decided to charge John with reckless driving. We eventually got that one dismissed, but the DWLS held up in court, since he was indeed driving that night without a license. All this is several months in the future. Today, August 7, it looked to us like he had a valid license, and so I believed him when he said he had taken a class and paid a hefty fine (got knows he took enough of my money for the latter) to get his license reinstated. In other words, his nimble mind came up with a lie on the spot that fit the situation and served his purposes. He reminds me of the savant who can't tie his shoes, but can sit down and play a beautiful Beethoven sanata. His intelligence is formidable and treacherous when he is obtaining his next fix. I saw the same with Jesse, who lived with us for a time, and with Tory as he was spinning out of control. All addicts are the same; they are all possessed by the same demon. It doesn't matter who they use to be, how much they love you, or use to love you, or how rational they once were. It just doesn't matter. Once the limbic system is hijacked they are all the same.
After several days of driving John about, while also driving across town to care for Wendy's parents, their health in decline, we borrowed money from her parents, i.e. borrowed from our modest inheritance, and bought John yet another cheap used car, A buick, car #12. I don't know why the fuck we did that; we just did. Maybe we wanted to get him out of our car and out of our hair. Or maybe Wendy just had enough on her plate with her parents. Or maybe we wanted to give him one more chance at life. As mentioned above, we believed he had a valid license again, though we couldn't fathom how that was accomplished. I've seen him perform other car related miracles, so IDK.
In return for this car, we expected, and were promised, a check, one of his many checks, which he said was at home in his room. Guess what - the check never materialized. "I'm going to have a heart attack and die from that surprise!" Instead, he jumped in the car and went off drinking with his buddies, though I'm sure he told us it was some emergency probation meeting.
Now it's the middle of the night and John is sittting stranded somewhere, with no money and no means of transportation. He is just sitting in a daze in a dead car. I am not just crying, but sobbing, as I have not done before. I find it difficult even to catch my breath. It takes 20 minutes for me to explain the situation to Wendy. We are all-in, borrowing her parents money to get this car, and it is dead in 9 hours. We bought it as-is, so no legal recourse. I don't know why God shits on us day after day. I don't know why each day is worse than the last. She tells me to stay; she will go get John. But for 15 years I have had to stand between them, figuratively and literally, to keep the peace. For 15 years I have done this, which is another reason I can't stop crying. I am so tired. She tells me it will be all right; she'll go get him, and call insurance, and have the car towed to Auto Authority, which is not far from his location, and everything will be all right. She kisses me gently and heads out on her rescue mission, while I lie down on the bed and gasp for breath, trying to get some control.
A week later its on to car #13, a Cadillac from the same lot, at a discount, and with a warranty. They felt bad that the last car blew up in 9 hours, and didn't want the bad press, so they made us a pretty good deal, though it is still an aging clunker. Once again John is free to prowl the streets of our suburbs, free to associate with his friends, and free to drink and to move on to harder drugs. Don't let them drive!
No - we can't - because he continues to borrow our car almost every night, and each morning Wendy wakes up and wonders if it will be returned, so she can take care of her parents, who need care every day. Even after the fact it is difficult to write about this time in our lives. We both considered suicide, but fortunately not at the same time. One of us was always able to pull the other one up out of the well of despair. That's why we're both here today to tell the tale. On my side I kept thinking about my insurance policy, which would solve so many problems. But I could hear Clarence talking to George Bailey. "Ridiculous to think of killing yourself for money, $8,000. You just don't know all the good that you've done."
Sometime during this month we confirmed his addiction to cocaine and heroin, and all we could do was cry, as we erased yet another line in the sand. We denied him access to the car, thus he would not be able to go get his fix, but if you think that stopped him then you've never seen an addict up close and personal. There is no concern for anyone else, nor even a concern for the future. There is only tonight, only now, only an insatiable hunger for the next fix. Sometimes his friends came and picked him up, knowing he would buy drugs for all of them. Sometimes he borrowed Tory's van, with permission, only because Tory was too drunk to understand what was going on. They're both over 18; what could I do? and sometimes he literally stole our car out from under us. He knew where the spare key was, and when we hid that he had another key made at the dealership, using just the VIN, his personal charm, and my credit card, having told me he needed $170 for probation or some other emergency. Apparently you can have a key made for any car at all if you know the VIN and you talk up a good story. No need to show ID or registration or title, or prove that you own the car. Who knew? If that isn't premeditated, cold and calculating, then I don't know what is. And it requires considerable intellect and planning, which belies his original diagnosis of "retarded", as rendered by Missouri DHS. No, he's not retarded, he is dangerously intelligent. He made sure he would always have a way to get to Detroit, even if it meant his grandparents would lie in their beds without food, and wallowing in their own waste. He made sure his one and only need would be met, because nothing else matters. So we woke up one day to find our car gone, while we still had all the keys in our hand. "Call it in stolen." said Beth, when we realized what had happened and how it was done. She was so tired of seeing her parents cry, day after day. She was probably right, but that is the nuclear option, isn't it? Grand theft auto, ten to fifteen. That's all he left us, day after day, night after night, was the nuclear option. There was never anything in between. And so we let him destroy our lives, while talking about how best to commit suicide, since there seemed to be no other way out. But Wendy's parents needed her, and Beth needed us, and still does, so even that wasn't an option. It was a tunnel without end, without a glimmer of light.
Subject: Bye ill miss you
Im sorry to bother you but im letting everyone know that i'm going to stop wasting a spot on this earth just to anoy and piss everyone off i knew i was useless but i'm finaly taking action ill probably going to be dead at around 7 just wanted to say i loved you even tho you hated me. Sorry i was in your way enjoy your new peacefull life
John M. Dahlke
The email includes an attachment - a picture of the gun that he intends to use.
He doesn't answer his phone, so I send several emails trying to talk him down off the ledge. But the sad part is, I am at peace with the outcome, whatever it may be. If he was in prison for ten years, starving, abused, going from one mental breakdown to the next, I couldn't live with that; but if he simply left this Earth, I would understand. someone like Whitney Houston, well, there's no excuse for that. She had money, fame, success, talent, and more talent, every gift from above, and she just threw it all away. What a waste! But John - in his entire life I don't think he has had two happy days in a row. It has been nothing but misery since the day he was born. So I would understand. The thing about an atheist is, we aren't afraid of death. If life isn't going well, then it is rational to check out. That is perhaps why Jesse Bering believes religion is adaptive, and religious minds have been selected for over the millenia, as described in The Belief Instinct. Religion makes you march on when you otherwise might not. Religion is survival, like keeping warm in the winter and looking for food when you're hungry. religion keeps Corrie ten Boom alive and mentally whole through a Nazi concentration camp. "There is no pit so deep that God is not deeper still." What more can I say? Unfortunately I lost my faith over 30 years ago, so I do the math, and yes, John might be better off if he simply pulled the trigger. But I also have a maxim: "Don't do anything you can't change your mind about later. Maybe your analysis is wrong, or maybe your situation will improve." So I talk him down off the ledge. He probably didn't have the courage to do it anyways.
What prompted this act of desperation? I don't know for sure, because he lies about everything, but it must have been something, because he's never had a day like that before or since. He says the police came to his work and wanted to cart him off to jail for some crime, one of his many cases, I don't remember which one. The prospect of jail was too frightening for him to bear. He said he had to go to the bathroom and slipped out the back, because he knows the building better than they do. He got away. That's the story he tells me a year later. Well whatever it was, it was a bad day, "The worst day of my life." declares Wendy, and given the past few months, that's saying quite a bit.
"If you knew his background, his parents - no wonder he turned to drugs. But he's off of it now, he's clean, and he's doing everything he can to stay clean. Here is his medication, you can keep it and make sure he takes it every day. His family won't take him back, and it's bitter cold outside. He'll be homeless if we kick him out now. Can't he stay here for just a few days?"
Indeed he did have suboxone, which is routinely prescribed for heroin withdrawal / recovery. Maybe he was actually trying to get his life together. But you see, I still didn't comprehend the mind of an addict. They cannot break the addiction on their own, even if supported by medication. In other words, out-patient programs do not work, and cannot work. The real thing is out there, and it calls like the song of the Siren. No, the addict has to be locked away for several months, in jail if necessary, or better still in a court-ordered residential in-patient rehab program. Jesse never had any intention of breaking free. Instead, they continued to create lies about work and probation, excuses to go down to Detroit to get their drugs. We had all the keys in our hand, even the key that was secretly manufactured, so they could not borrow / steal our car - and yet they always found a way. One day they borrowed Tory's van, and got into an accident in Detroit. The other driver got the ticket, it wasn't John's fault, but that hardly matters. The van was totaled (our good luck with cars continues), and given its age and condition, it was not insured. My son destroyed my friends van, and I felt an obligation to compensate him for his loss, though I had no way to do so, just six months out of bankruptcy. This created a rift in our 30 year friendship, a rift that exists to this day. He was a drunkene fool who lent his uninsured van to a known drug addict, but my son chose to drive said van into Detroit, at night, when the roads were bad, in order to get his fix. There is plenty of blame to go around. Eventually I did give Tory a thousand dollars, half the Bluebook value of the van, which I consider fair and equitable, but it did not restore our friendship. We will probably be apart forever more.
After this incident I am even more determined to get Jesse out of the house. I tell John that this is not a homeless shelter, not a rehab center, so John whips up another lie, and he whips it up quick. "Jesse is applying to Sacred Heart right now. We're filling out the forms on-line. You can take him their tomorrow; just let him stay here one more night." This is how an addict works. He doesn't ask for the sun moon and stars; he asks for one more day, one more night, just another hundred dollars, just enough that you might say yes, just enough for one more fix, because there is only today, there is only now. Tomorrow he'll need another fix, but he'll worry about that tomorrow.
Well tomorrow came, and surprise surprise, Jesse did not go to Sacred Heart, so once again I declared it was time for him to go, inclement weather notwithstanding, especially since Beth saw him shooting up yesterday. John had to come up with a whopper this time. He said he would talk to Jesse, and they would get his stuff together, but there was something else he wanted to talk to us about. At this point he started to cry. This was always my cue to beleive him - something he could not fake. But no longer, because an addict is capable of anything and everything, in order to keep the drugs flowing. His tears and the following story were completely manufactured.
"Mary killed somebody. She was driving and Chad started beating on her. She lost control of the car and got into a traffic accident. That's how the axle got bent on the Lincoln. A little boy was killed. I gave her most of the money I made last year for her lawyer."
Well that explains his missing checks, and the damage to the Lincoln. combine this with his tears, and we bought it, at least for a time. We turned our attention away from Jesse, which is exactly what he wanted us to do. We drove to Mary's apartment, determined to drag her away from her abusive relationship once and for all. She was not home, so we went to her work, and she wasn't there either. This is fortunate; she would have thought we were nuts! After further reflection I realized she would still be in jail if it had happened as he described, or they would have determined Chad was at fault and he would be in jail. Poor blakc teenagers - Jesus - somebody would be in jail! What was I thinking? Also, there would be something about this accident on the internet - a police report, a newspaper article, something. But no - it was bull shit from start to finish. Never mind the heartache it caused us, thinking our daughter had been beatne, had run down a child, and was facing years in prison for something she didn't do. That doesn't matter, because we don't matter, because nobody else matters, because there is only today, only now, only the next fix.
We finally got rid of both Jesse and John in a rather indirect manner. We continued to withhold our car, and Tory's van was gone, and once again they needed their drugs, so they made up a story about probation, and we said we would take them. They had to go to the heart of Detroit, and score, and make it look like probation. A tall order, but we left them no choice. We arrive at the drug house around 9 and John says he needs $140 for fees and drug testing. We have it, in cash, but we refuse to give it to him. We will go inside and verify his story and pay the probation officer directly. He can't allow that, so he has to think fast. They go inside, and while they are gone I tell Wendy what to expect. "They will come back out with a reason why we cannot enter." Indeed they do just that. John tells us the place is on lock-down, and only the individuals on probation can go in. "Bull shit!" we say in unison. He tries to convince us for another ten minutes, tries his best to get his hands on that money, does everything he can to get those drugs, but then his spidey senses are tingling. He knows we have been sitting here too long, and something is going to go down. "Oh never mind," he says, "let's get out of here." He has just exposed his rook. I move my knight into position.
"Wait a minute John," I say with a grin, "you told me you had to come here for probation or else you were going to jail. You said you had to pay these fines or you were going to jail. I'm not going to let you go to jail. Let's go inside and meet your probation officer and get this figured out."
In a flash two policemen are on either side of the car. They pull the boys out and search them. Jesse becomes a blubbering idiot as he tries to explain all the paraphernalia that is on his person. John is clean, but he has warrants, so he is taken off to Macomb County jail. "Don't let this kid back into your car." says the policeman, referring to Jesse. "He has brought you to a drug house." I don't say anything, because he has a gun and I don't, but stop and think about that for a minute. They know it's a drug house, and they can't shut it down? No wonder Detroit is 138 square miles of urban decay. Perhaps the police are getting kickbacks from the house, as described in The Jungle over a century ago. That would not surprise me; this place really is a jungle, a city that you never want to visit, much less live in. So what do the police do instead? They give John a ticket for Entry Without Permission (EWOP). No kidding! The drug dealers ply their trade without any interference whatsoever, while my son has a new case to deal with, a mythical charge that the policeman made up on the spot. We're rich white people from the suburbs, maybe we'll just pay the fine and put a little more money into Detroit's coffers.
I am writing this a year later and the EWOP case is still unresolved. John tells me the drug house is still in business. Detroit was once a vibrant city, key to the industrial revolution, the city that put the world on wheels. My parents remember; Wendy's parents remember. Now it is a place of crime, of poverty, of death. Requiem aeternam dona eis, Domine.
While in jail John wrote apology letters to us and to Beth, just as he did a year ago, and they meant just as much as they did a year ago - absolutely nothing. As soon as he gets out he will return to drugs, and rack up eight new charges in four months, one of them a felony.
during his February stint in Jail, Nana died. We deliberately postponed her funeral so that we could combine it with his, a double funeral, as we really did not expect Papa to live more than a couple months. People come from out of town once, not twice, and we pay for the hall once, and put ashes in the ground once, and so on. It just makes sense. But we had a small service at the house for Papa's benefit. I wrote about it here.
On Friday we went to the mini-service at Papa's house. I made a disk of quiet old-people music (no rap), and we played that while Beth made appetizers for everyone. Somehow Beth managed to burn herself. She always does. You can read about medieval tortures, or you can just watch Beth cook. Papa ate a lot of shrimp and snacks which is good cause sometimes he doesn't eat much at all. The preacher spoke, and then some of us told stories about Nana, what we remembered, and Papa was awake and clear through it all. But when it was done he was tired and really needed to go back to bed. He couldn't go out of the house for a full-scale funeral, so this was just the right thing to do for him. One thing we didn't do was take a picture, but I guess you know what we all look like, and we've got some happier pictures instead to send you, which I am including with this letter.
Saturday was our date. I don't think Mom and I have gone out anywhere (other than occasional restaurants) since the Jay Leno show. Remember you went with us to see Jay Leno and he was very funny. But that was a long time ago. Married people just shouldn't go years and years without going out together. It isn't healthy. So this was very nice. The group is called Rain and they look like and sound like the Beatles. That's the best we can do since two of the Beatles are dead. You know we've heard these Beatles songs a thousand times, and have them totally memorized, and we expect these guys to sound just like the songs that we know, and the thing is, they do! They sound just like the Beatles and look just like the Beatles. That's why people pay to see them. It was awesome! But the great thing isn't so much the show; the great thing is that Mom and I are doing something together, something just for us. The first song is "I Want to Hold your Hand", and we were already holding hands anyways, and she is crying because she is happy; and when is the last time that happened? I hope we can have a lot more happy times in the future. We need to have our marriage back. I almost forgot what it was like. When you get out we need to figure out how to help you without destroying ourselves. So far we have destroyed ourselves, and not sure that we really helped you very much.
We had so much fun we're thinking about the Bob Seger concert in April, if it's not too much money. It's at the Palace, which isn't so great, lots of high up seats where you can't see anything, that's where we saw Jay Leno remember, but you can hear the music wherever you sit so I guess it doesn't matter.
We sent a letter to your K lawyer about Centerline, with proof you were in Florida on Nov 7 and could not go to your sentencing, so hoping he can set a new court date for that one. We'll also try to make progress on the other two cases. But it's the weekend and not much you can do on the weekend. We also put a call in to America's Best about your glasses but that too will have to wait til Monday.
Love, Mom and Dad
"Jesse named me as an accomplice in one of his horrible crimes, and he knew our license number, having lived here, so that's why they stopped me, because he gave them our license plate. They figured out that his story was bull shit, but since he knew our license number they are giving us a new plate. They put the temp plate in the window and they're sending us a new one in the mail."
It is entirely plausible that Jesse would blame him for, well, for anything, if it would reduce his sentence by one day. He is a snake in human form. And there is indeed a temp plate in the window. But it's the same number, so how does that help?
After a few phone calls we learn that the plate was removed because of a state law that requires the removal of the plate whenever the driver of the car is charged with a second DWLS. The cops weren't doing us any favors, and no Jesse was not smart or proactive enough to memorize our license plate before we kicked him out of the house.
"It's a stupid law." comments the sergeant. "It just makes more work for us, and like you found out, sometimes the car belongs to somebody else, not the driver. Anyways, nothing we can do about it, you have to run with the temp plate until his case is finished, then you can get your metal plate back again."
Once again we do not allow him to borrow our car, and now he doesn't have access to his drugs, so he has to think fast, and move fast. Lies are not sufficient any more; this calls for disinformation. He tells us he is enrolled in a class that will reinstate his license, a restricted license for work and within certain hours. This is an excuse to get more money out of us, and it is a stepping stone to his next car. After two "classes", which are actually visits with his friends, he generates a temp license with the Secretary of State seal lifted off their website, and the address of a nearby SOS office. At first glance it looks sort of real. We call to confirm, but you can't call a particular SOS office, you can only call the main line in Lansing. I sit on hold for an hour, and then I make the mistake of giving them my real name, instead of pretending to be John, so naturally they won't tell me anything about John's license. I call back, wait another hour, and pretend to be John, and they tell me I can determine the status of my license by going to a local office and paying ten dollars. Like I have time for that. So there is no way to confirm or deny his story.
A couple days later he whips up his next lie. There is a car that sells for $7,000, and he used one of his work checks, you know those checks that never materialize because they don't exist, he used one of those work checks to pay half, and could we find it in the budget to pay the other half? If so then he could drive to Port Huron and get his work checks reissued, over $37,000. I am still wondering if there is any chance those checks might exist? If so, we certainly don't have time to drive him around and get them reissued. Wendy is helping Papa almost every day. So I am actually considering car #14, a decent looking Monte Carlo. It doesn't raise my confidence however when we note the sticker price of $3,500. He has some bull shit story of how they reduced the price from $7,000 to $3,500 because there was a shift change and the second shift didn't want to be confused by the original price and his down payment so they just changed the sticker price. Sometimes his lies are carefully crafted and quite clever, and sometimes they're just damn stupid, born of desperation. So we all know he hasn't put a dime into this car, and yet I buy it for him anyways, with money that we can't afford. Wendy thinks this is the stupidest thing I've ever done in my life, and she is right. It really is the number one stupidest thing I've ever done in my life. I am putting him back on the road, and I should be doing exactly the opposite. Don't let them drive! With his car, and his independence, he will participate (without knowledge or forethought) in one of Josh's robberies, thus another felony. The charge won't come in for a while, so we don't even know about it until June. I've already mentioned how the police can "investigate" for months, and then, when you think the coast is clear, the ton of bricks comes crashing down on your head. While this charge is cooking, he acquires retail fraud, a false 911 call, which he doesn't remember making because he was high at the time, possession of marijuana, which is a violation of his bond on the DUI case and the drug case, and four more DWLS counts. What the hell, he's got wheels, he can do whatever he wants!
It is the middle of the night and I can't sleep so I will write this to you. Don't get angry, you know I'm just trying to help you, as I always do, and I think you know I'm right.
The drugs - they still call to you. You even told this to Mom when you wanted to share your feelings. Of course they call to you. You would have to be some kind of nonhuman robot for them not to call to you. You're not a robot. You're a human being. You have a brain like every other brain, same neurons same chemicals same wiring. So of course the drugs call to you - that's normal - that's expected.
Mom knows you can't be around them or you will say yes. That's what she told you and of course you got offended. "I can just say no, I can handle it." Well you might say no the first day, and maybe the second, but then they will call to you and you'll say yes. Your Mom is smart and your Mom is right. You can't be around it. If the drugs are in Aaron's neighborhood then you can't go there; If it is at your workplace then you can't go to work.
Here is what happened on Sunday, 2 days ago. You were in your car and gone all day. You called me and asked me for around $150 like every 2 hours. For ballbearings on the car and for insurance and for this and for that. Almost a thousand dollars before the day was done. Some of this was to fix the car, but some of it was for drugs. Of course it was, do you think we're stupid? That's why you didn't want us to go into your car to set up Onstar. What would we find? We found one of those cut-off pens you use to snort with. Don't tell me it was for something else, that's bull shit. You or one of your friends did drugs in your car. Even if it wasn't you you know you would catch the charge. Probably it was you and your friend together, or maybe just you. And what else was in the car? We didn't search like the police, I didn't want to do that. That was not my mission. I just happened to stumble upon the half-pen. Doesn't matter anyways. You can't hide from yourself, and you can't hide from the long arm of the law.
You shouldn't drive at all, until we can officially confirm your license, and I'll get to that in another email; but even if you don't drive it's the same problem. Your friends come and take you far away, they take you to bad places, and you call me at 3 in the morning with a made up story about probation fees, all to buy drugs. And the thing is, you don't want to do that. You want to be free, really free. That's why you asked me about this camp. So come down and talk to me and Mom about it, what is it and how does it work?
You are on the edge of getting your life back or losing it. You are on the edge of getting your family back or losing us. Think about it; if you get another drug charge, do we have any more money to help you? No. Do we have any more patience? No. You have to decide now that you want to live. Maybe that's why you are thinking about this camp. And in the meantime you shouldn't go anywhere without us. You shouldn't go to work (they don't pay you anyways), you shouldn't go to Aaron's (he can come here to visit), and you shouldn't go to court / probation meetings without us. Stay with us all the time, and tell us about this camp program. Save your life while you still can.
I send this letter to his ex-wife Patty, and she assures me that he is doing no such thing, that it is all talk, but that is probably because he lacks the mental skills needed to start a law suit. Or perhaps he spoke with a lawyer, who told him there was no case because John didn't get the ticket. I'm not sure, I only know the thousand dollars I gave him did not sate, (it was not enough to buy a car), and today he doesn't even remember the transaction. I could have kept the money for all the difference it made. Some day, perhaps a year from now, he may yet start a law suit, in order to obtain a car, in order to keep the ethanol flowing.
As you probably know, our son John was in an accident while driving Tory's van. This was back in January. John took the van with permission; Tory gave him the keys. In fact Tory had lent him the car many times prior to this. Tory did not have full coverage, it was an old van, many miles, probably not worth covering, so there was nothing from insurance. Tory was ok with this for a while, que sera sera, but as each month goes by he gets more angry. Actually it comes and goes, depending on the alcohol in his brain. Sometimes even today he's fine with it, but then sometimes he's upset all over again and approaches John anew.
A week ago he threatened John with a law suit to recover damages, asking for $7,500. This is because he thinks he paid 5 for the van. He paid 2. It was only worth 2 by Kelly Bluebook. We sold it to him so we know he paid 2. But with all the alcohol he is convinced it is worth 5. Anyways I asked him if he was suing and he said yes. I screamed and yelled, partly because he is just harassing John, and partly because he should be suing the guy who caused the accident.
A couple days later he said you started the law suit, and he would put a stop to it. In other words, he blamed the whole thing on you. That was a face saving maneuver so I let it be. Don't worry, I know you wouldn't do such a thing, but I thought you might know something about it, or he might have talked to you about it, or he might have asked you for a lawyer referral.
If he makes any trouble for us, he is biting the hand that feeds. I don't think anyone else, even his brother, would tolerate him the way he is now. Jay won't take him back, and that's for sure. Making us angry is just not smart.
Do you know what is going on, or could you find out?
I am still very lucky in two ways: I and my family are in good health, and I am married to the most beautiful woman on Earth. The job is gone, and finding another comparable telecommuting job is impossible. We can get by for a short time on the inheritance we received from Wendy's parents, but not for long, and that isn't really how I wanted to spend their life savings. I wanted to go to Vegas and hear Celine Dion sing, that would be a religious experience; we can kiss that dream goodbye. To make things worse, Jay works for the same company, thus he too is unemployed. He needs the equity in this house to survive, so with great sadness he tells me he has to sell, and we have to pack up and leave. But where can we go with no income and barely a year out of bankruptcy? No apartment would say yes to that. In one of my rare journal entries from that time I summarized my life like this.
No job, no income, Wendy's inheritance dropping fast, John (perhaps) with hepititis C and destined for jail with its medieval medical care, Beth's car broken, Mary's car broken, Beth with no financial aid due to poor grades, CMU looking for a boat load of money in August, John and Wendy fighting daily, John still leaving the house and calling me for money day and night for drugs, packing up to move so Jay can sell the house, but nowhere to go, Tory falling down drunk upstairs, my Mom's health in decline, our medicaid aplication rejected, Wendy sick and no money for meds; I never thought life could be this bad. My mind is thrashing, I don't know what to do. The kids burst in to wish me a happy Fathers Day, and see Wendy crying, and don't know what to do. By afternoon we gather ourselves together, pretend like life isn't hopeless, and go to a restaurant we can't afford. It's a nice dinner out and we all get along. We go home and go into separate rooms so that nothing spoils the mood. If we're together for even a short time we will argue / fight. My depression returns like a crushing weight upon my chest. I don't know what to do.
After his fourth DWLS in three months I finally realize that John should not be driving. (And all it took was a simple clubbing over the head.) Wendy has a brilliant idea, which I glom onto right away - donate John's car to Volunteers of America. We don't have time to sell it, and if it sits in our driveway John will hotwire it and drive away; he's that desperate. The car has to disappear, today! Then we can show the donation to the various judges for sentence mitigation. In other words, "We are doing all we can to make sure he can't drive any more. His car is gone, you don't have to lock him up to keep the streets safe." Our lawyer, who is very good by the way, confirms this is a smart strategy. In fact our donation carries the day in some districts. In Troy, for example, the judge enters our receipt into evidence, offers a minimal sentence for his latest DWLS and 911 call , and waves the costs and fines for these two cases, and for all his prior traffic tickets in Troy, which are numerous, and still unpaid. It's a huge gift totaling approximately $8,500. This is perhaps the only judge that realizes John is mentally ill, and often the object of manipulation by others. She has seen him, and the Kulture boys, many times before; she knows what is going on. But she wasn't sure we were managing him responsibly, until today. Seeing our donation, and our resolve, she rewards us by wiping away the past as best she can. She even says in court, "This is your chance to start over."
That's one car down - what happened to the other two?
Beth's tranny is failing fast, and at a cost of 3 or 4 grand, it lies outside the circle of convergence of the "makes sense to fix" function. We only spent 7 on the car to begin with, and that was three years ago. Well I don't have a spare $7,000 to buy another car, and with no credit and no income, I can't finance one either. And yet she needs a car for college. She recently moved into an apartment off campus, so a car is just as vital as the tuition payments. No car - no school. It's that simple. Once again my mind is thrashing, while Beth limps around town in first gear, the only gear that works.
One morning I am sitting on the floor of my bedroom playing solitaire, an advanced variation of Calculation, while Wendy watches West Wing, and it hits me like a bolt from the blue. At this time in our lives I play solitaire by the hour, when I should be looking for work, and Wendy watches West Wing by the hour, when she should be packing to move. Sometimes life is so bad that you just fall into a mindless routine, doing something that gives you comfort, over and over and over, for hours and hours, instead of doing anything that might help your situation. My Mom told me of a time when my Dad was laid off, and he just laid in his bed and slept for days, instead of looking for work, while the bills piled up. It's irrational, but I understand it now. One difference though is that while I play solitaire I often think about my life, looking for new ideas, looking for a new plan. So I'm playing solitaire and it hits me - all we have to do is lie! Haven't I learned anything from John over the past two years? I coach Beth and Wendy and they understand right away. "I still have my job, and your car works just fine." sure - that's the ticket. And as John has taught me, lying isn't enough, you need disinformation, so I gather up my pay stubs for the past 6 months. I'm not going to tell them that my job is gone, that my May pay stub is the last one I will ever receive, they don't need to know that, do they? It's now or never, this is the last month we can pull this off. On the other side of the equation, Beth is going to casually drive her car onto the lot for a trade-in. It's completely drivable, in first gear anyways, so they should give us some money for it. In other words, we shouldn't even need a down payment. But there is one catch - I don't know if we have good credit, just a year out of bankruptcy. As it turns out we do, almost back up to 700, because, if I do say so myself, we did everything right. We continued to make our car payments, and we god a new credit card, used it every month, and paid it off every month. So the loan is approved, and Beth has a newerish car with a comprehensive one-year warranty. Do I have any moral qualms about this? Not at all. John lies to destroy his family; I lie to save mine; and since I am making the payments every month there is no fraud. The bank is getting exactly what they expected. And the dealership? They drove Beth's old car around the block before they bought it. "I just want to make sure the transmission isn't acting up." says the salesman. "Sure," I gulp, "go ahead." So he knows - he knows the tranny is on its last legs. That's why they only gave me a grand for it. All parties got what they expected, and everyone is happy. Beth can go back to school and finish her degree. All this happened because I know when to lie, and how to lie.
Still one car to go. It's a bright sunny day, the roads are clear, the traffic is light, the cars bunch up ahead of us as the light turns red, they come to a stop, Wendy is asleep at the wheel, she wakes up and slams on the brakes, but too late - we hit the next car going 29 miles an hour. He drives off with just a scratch on his back bumper, and our car is totaled. In other words, our good luck with cars continues. Bear in mind, my microsleep theory is just a theory, I can't prove it, and like any burst of microsleep, Wendy doesn't remember it and would swear it didn't happen. But how else can I explain it? She's gotten very little sleep during the past three days, with packing and worrying and John's nocternal bull shit. Just last night he called in tears at 3 AM, he felt sick, probably from drugs or the lack of drugs, and we just had to go pick him up, thus we drove all around an unfamiliar and rather frightening neighboorhood in the pitch of night, but couldn't find him, so came home empty handed. Wendy got maybe three hours of sleep, then we picked him up in the morning and brought him back to his precious bed where he slept all day, the little shit, while we ran all around town performing various errands and obligations. These are the events that led up to the accident, thus I am putting the blame squarely on John, or maybe myself for letting this bull shit continue. It's certainly not Wendy's fault, but she's the one crying, and she's the one who will get the ticket. This is my wake-up call. If I don't kick John to the curb, and soon, my entire family will be destroyed. I don't have a job to keep us afloat any more, and that's not his fault, but everything else is. These are the thoughts that run through my mind as we sit by the side of the road with no car, and no way to buy a car, unless … I can perform another miracle.
The policeman on the scene was very nice. He gave Wendy some kind of impeeding traffic ticket that carries no points, even though he knew she was at fault. He could see she was in distress, and this just shouldn't have happened. Have you noticed - points are like a slippery slope. If you have some on your license the police are likely to give you more, but if your license is clean they give you the benefit of the doubt. Judges run under the same bias. So take a class or do whatever it takes to avoid those first three points on your license. Don't fall off the slippery slope. He also gave Beth a break, seeing that she was rather shaken up. She answered honestly that she was not wearing her seatbelt, and he said, "Well I'll just write down that you were. You don't want a $65 ticket." I thought back passengers didn't have to be belted in, but I can't keep up with the ever-changing traffic laws.
At this point I should mention a couple of companies that merit high praise. National General Insurance paid off the entire loan on our car, which is probably a bit more than it was actually worth. They had us by the nads; they could have given us less, much less, and we would have no legal or practical recourse, but they gave us fair compensation for the car, probably higher than Bluebook. In fact, over the past three years they have paid all our claims promptly, and if you've read this blog from the beginning you know how many claims I'm talking about. With this horrific history, they have not raised our premiums at all, well not until this last accident, where they had to shel out $16,000, and even with this on the books they only raised our rates $50 a month. This is a company you want to do business with.
Another first rate company is Lunghamer Buick in West Bloomfield Michigan. They sold us Beth's car, and our car (as you will see below), and they offered us a free loaner if our insurance did not provide a rent-a-car for the duration. Beyond this, they scrambled to find a second loan when the first loan fell through at the last minute. If you are looking for a car and you live in Oakland County, you want to do business with these guys.
Once again I gathered up my pay stubs and sat in the Lunghamer dealership. We had two concurrent car loans before, and one has been paid off by insurance, so we should be able to get a second loan as we did before, right? the finance guy returns smiling, and says we are conditionally approved, but the bank would really like to see my June pay stub. "Just to make sure you haven't lost your job or something silly like that." he says, almost with a laugh. What an absurd thought! I chuckle nervously. Ok - think - think fast - think like John - like a drug addict who has to get his next fix. "Well it's still the last day of June, the pay stub probably hasn't been cut yet, and then it has to be mailed to me, and the insurance company doesn't want to extend my rental contract, so we really need this car today." The bank relents, and approves the loan, but they would like to see my June pay stub as soon as it comes in. I smile, and shake the man's hand. Off we go in another car, our second miracle in a month. Obviously I never deliver the June pay stub, but we have the car, and possession is nine tenths of the law.
We collect his property, which he wisely left in our name. This includes his phone, which has a sickening cascade of texts to and from his friends and his drug dealers. This prompts us to write the following letter, which opens with a salvo of tough love.
Over 4,000 years ago it was written in Jewish law, Numbers chapter 32 verse 23, "Be sure your sin will find you out." This means you can't hide things forever, and the horrible things you do come back to haunt you. This idea is now called metaphysics, but it's actually very old.
Having strolled through your phone I find that on the very last day, the day that you went to jail, not months or years earlier, not back in your dark time, but on the very last day, you lied to us at least 4 times.
All of these were lies. Instead it was a typical day, wasting hours of Mom's time, and stealing money from us that we can't afford, so you could play with your friends and do drugs.
The last two years have been, for us, as bad as being in jail, and there is no reason to think it will ever change. That you would stop lying to us - that you would ever change. On the last day you were with us it was still the same. No reason for us to think anything will get any better.
When you get out, there is no undirected money, and no taking you to work, or dropping you off anywhere. I just can't be in jail any more. This means you have no social time with your friends, but that's ok cause they're all `drama' anyways, all of them. I thought Tracy was ok but she's a junior high druggy. I thought Lu was ok but she's a lunatic and dangerous. Maybe Kevin is ok, don't know, but he's on facebook asking you for $1,000, and I know you don't have that kind of money, so what's up with that?
Mary came yesterday to help pack, and besides packing, it's just nice to talk to her in person. On the phone she just asks for money, but in person she says nice things about us. And she worries about you!! She is coming back today for more packing, and Aunt Becky too. So we hope it is a productive day. Got to get everything ready to go.
Oreo just had to go outside in the middle of the night and she came back in covered in burs. I don't know why some days she runs through the bur bush. Depends on her mood I guess or what she is chasing. It will probably take us most of the day, from time to time, to get them all out.
Beth reports she is settled in college. She is unpacked, and has returned the u-haul. I hope she gets along with the boys, in a platonic sense of course.
Love, Mom and Dad
In the following letter, Tracy is one of his friends who often went down to Detroit with him to do drugs.
On the phone last night it sounded like you wanted plans, and I don't blame you. Plans can be an island of stability in a sea of danger, or it least it feels that way even though plans may change.
Legal shit. I sent Ellen an email with some ideas so she can start as soon as she gets back on Saturday. I'm sure she'll try to talk Berkley down to a low sentence, which is why you weren't officially sentenced last week. Probably smart, but who knows if it will work. If you do need to be in for 60 days or 90 or whatever, then it's back to my concurrency plan. Try to get all your cases heard quickly, so if a judge says 10 days or 20 or 30, we can ask for concurrent, and all will be done when you're done.
Housing plans. Don't really know. We have this house for 6 months at least, so we're set for a while. When you get out you will come here. After that I really don't know.
Dog plans. D is going to Gail's, as we talked about earlier. Don't give me any arguments or fuss, you can't take care of him and neither can we. He's too big for Lansing or for an apartment, but Oreo is small enough to slide in under the radar. Meantime, D and Artimus are like brothers, running together in the big back yard. They just have a grand time at Gail's. It's doggy Heaven over there.
Money plans. When you're out we manage every minute of your life and every dollar you spend. If probation calls, or a debt collector calls, or a detective calls, you ask them to wait a minute until you can get me or Mom on the phone with you. You don't go anywhere, or talk to anyone `official' without us. Maybe then we can get a handle on money. Of course A lot will depend on job situation, when and where and what kind and how much. Everything depends on that and I can't make any future plans until I get a job.
Mom is trying to manage Mary today, her one day off this week, cause she needs tabs for her car, and new car insurance. She already has a ticket for bad plate, which we need to go to court for. Everywhere I look it's a nightmare.
Well yesterday after court Mom and I went to Indian, just cause we were sad and needed something yummy. It wasn't our old indian place, which is closed, but it was still good. We should make a point of going there once a week, God knows we have to go over there anyways for other things. I always think of you when we have Indian.
We had an interesting talk with your friend Tracy. She called us, we didn't call her. She was worried about you and wanted to know what's happening. She also said she wanted some help with some of the issues she is dealing with. We're not experts of course, but we tried to point her to a few places. I think she's a nice girl, but going down a really bad path, and she needs to stop before she winds up where you are. No, you can't help her, because you're not standing on your own two feet, but maybe Mom and I can give her some direction. I hope she listens!!
Well we'll see you tomorrow for the Hazel Park case, and Friday in Royal Oak. We hope and pray for the best. The magic word is concurrent!!!
Love, Mom and Dad
These addicts remind me of the zombie ants, that are completely controlled by an internal parasite. They are driven to find a particular leaf, and nothing else matters; and when they find it their life is through, and only the parasite survives. Your son, your daughter, is controlled by another agent. Oh he still looks like your son, and perhaps he still acts like your son in superficial ways, but he is possessed, and his intelligence is hijacked. He will try not to harm you, but harm you he will if that's what it takes. He will try not to become a criminal, but he will become a felon if that's what it takes. And on that day we don't feel sorry for him any more, do we? Think about it - when he is sitting in the cold doing crack we cry boo-hoo, and want to help, and put him in rehab, because we are enlightened and we know it's just a disease - and why can't we get more funding for mental health in this country - but aha, the next day when he gets a gun and robs a stor to support his habit, then we have lost all sympathy, haven't we? "Lock him up and throw away the key." we say. What you might not realize, if you've never seen it up close, is that it's really the same person, the same zombie, just one day apart, just one day difference, just one more day on his inexorable path to distruction. Did you find him before or after he ran out of money - before or after he became a felon - before or after his demon pushed him into a crime that went south? Our jails are full of people like this, criminals yes, but not by birth. This is perhaps why, if I had to explain it to you, or my wife, or even myself, this is perhaps why I gave John my entire life's savings, bit by bit, day after day, so he would not cross that line that they all cross eventually, the line that Josh Kulture crossed, whence he is in state prison for ten years.
Girls can take a detour on this path by selling their bodies. A network of pimps stand ready to exploit. This is better than 20 years in prison, I suppose, unless you get aids, or your pimp beats you regularly because you aren't making quota. And not just girls; John says he was offered drugs for sex, no monitary friction, a direct exchange. He said no, only because I gave him money every day. If he doesn't have aids, then I am to be congratulated. Still, this path is often unsustainable for boys, which is why so many turn to crime as a last resort, and fill our prisons. Their charges present a picture of violence and psychopathy, but this was not preordained. It did not have to be.
In this letter I try to explain to John, gently, that he is possessed, that he is a zombie out of control. I have to dial it down a bit given his mental and emotional state.
I've been thinking about love and two brains lately. There is this movie, I don't think you ever saw it, where this lady has this guy tied up, and she's hitting him with a hammer, and saying, "I love you." Try to picture that! It's a Stephen King movie / book of course. Anyways, it reminds me of us for the past two years. Almost every day you would tell us terrible ridiculous lies, and take money that we couldn't afford, so you could go out and do drugs with your friends; and keep me awake all night asking for more money, or saying you were in trouble for something, or promising me a paycheck when you got home, if I would just wait up for you; day after day, every day; and when you left with money you manipulated from us, you would always say "I love you." And when you got back at 5 in the morning, after I had waited up all night for you, and you had nothing for me, and you would go to sleep, but I couldn't sleep because I still had to work, but before you went to sleep you would say "I love you." Like the movie, you hit us every day with a hammer, while saying "I love you." And yet I thought, and I still think, there is some small part of your brain that does love us.
I talked to you about this when you were in Florida. I told you how your bad brain would climb out of the box and you didn't even notice. How you might even do things you didn't remember doing. How the other brain was controlling your life. I told you to put it back in the box. When you see it crawling out of the box, put it back and close the lid tight. Let your smart brain run your life. Let your smart brain do what is good for you in the long run, and don't let the other brain just have fun today, and destroy all the people that you love, including yourself.
You still have two brains. On the very last day, just before you went to jail, you lied and stole money for more drugs, like you did every day, even though I have no job, and you said on the way out the door, "I love you." That's why you're so sad and depressed all the time. Because your other brain runs the show.
You will see lots of counselors over time, but they might not understand your two brains. They don't know you like I do. So tell them - try to explain. Explain how you would do things that were not good for you, and very harmful to us, even though a small voice was telling you not to. Then maybe they can help you learn how to keep your other brain in its box. If your good brain was in control all the time, what a wonderful person you would be, and what a nice life you would have.
Mom picked up Mary fromwork last night, cause her car was getting fixed. Just a broken headlight, which is pretty damn good if that's all that was wrong after an accident. Not a big deal I guess, I hope. She moved to a new place; we haven't seen it yet.
Friday some people are coming, I think, to help Mom pack. I'm not sure who, and I don't really count on it, because people say they will help and don't always come. I hope they do cause we need to get crack-o-lackin.
Mom made a lovely meal last night, pork chops and potatoes, just simple food, but yummy. We'll probably have the same thing (leftovers) again today.
Right now you are with Ellen trying to figure out the Royal Oak shit. That one scares me, and her, and probably you too. The other stuff is relatively small, and will pass, but that one could be big, all because you had to hang around with those monster Kulture boys. What more can I say?
Mom will see you tomorrow. I probably won't come cause they only let one person in the room anyways. OCJ is anal about visitation. That's one way MCJ was better. But we'll both be there for Berkley Thursday. You should go right to guilty then immediate sentence with concurrency, but if Ellen suggests otherwise then you listen to her, cause she's smarter than me. And don't panic.
Love, Mom and Dad
With Jay's assent, we turn off the utilities at Waymouth. He will reactivate them in his name once Tory leaves. We're hoping the lack of cable, heat, electricity, and water will encourage Tory to go. (It runs from a well so no electricity means no running water.) We go back on the fourth and he's still there, passed out in his bed in the dark, with toilets overflowing. The smell fills the house. He agrees that he needs to go somewhere, and since he can't stand up, we suggest the hospital. He slides across the floor on his butt, down the steps, out the front door, across the grass, and into Gail's car. She takes him to the hospital, and then returns to the daunting task of cleaning up the house for show. His story is both interesting and tragic, as with any addict, but at this point he is leaving my world, and so his story is beyond the scope of this blog. I will close by saying he is in a great rehab center, and we are hoping for a recovery and a return to self-sufficiency. All the best, Tory. Take heart, you're not alone.
Well Mom got her phone to work again, which means she can print out some pictures, which means I should send you another letter. Unfortunately it wasn't working well during the concert, so we only got one picture, even though she took many. Don't get me started on phones. The only thing I hate more than phones are cars. Anyways, we were going to take Mom's phone to a sprint store but it seems to have magically fixed itself last night. Whatever!
We already told you about the Eagles concert and how great it was. Probably the best concert we've ever been to, ever. You've never seen so much talent on one stage! And they sound just like they did 40 years ago - no kidding. When you get home I'll line up all the Eagles songs for you and play them.
You asked last night about PTSD, but those phone calls are just too short to explain it. I'll try to explain it here with an example. We were watching Star Trek, which you know we like to watch, and that puts us in a pretty good mood, we just relax and watch and hold hands and get ready for sleep, but there was a commercial for some car dealership at 8 mile and John R, and Mom started to cry. That place brings back so many memories. She would get up at 6:00 almost every morning, drive through traffic to Warren to take care of her dying parents, get home after 6, after a 12 hour day, then you would come down with more lies about work or probation and how we had to give you $100 that we couldn't afford, and she had to drive you to your "work", and then you'd call in the middle of the night and tell more lies about how work made you go to Detraoit, and you needed another $100 and a ride home. We had to come get you, and we sat in that horrible place with drug dealers and monsters in the middle of the night waiting for you. Then after texting you, begging you to come, you finally came back to the car and we drove back home. Then the next morning at 6:00 Mom had to get up and do it all over again. Day after day after day. Well that's not happening any more, but it's hard to shut off the feelings when they come rushing back. We are not just remembering this stuff, our body is reliving the feelings, the panic, the fear and of course the stress. It will be a long time before you realize how horrible the last 3 years have been for us. And sometimes a little thing like a commercial will bring it all back. Or she sees that fake restricted license you printed out and she cries again. You asked if it ever gets any better. Well the experts say it does. I hope so.
Love, Mom and Dad
I have already described the cascade of economic misfortunes that befell our family, including extended unemployment, loss of our home, bankruptcy, and ongoing tax debt (which cannot be absolved through bankruptcy). As you might surmise, we lost our health insurance in 2009. I tried diligently to get my children covered through Medicaid, but that is no easy task. You have to have assets totaling less than $2,000, including your car, you can't make very much money, you can't be living with anyone who might help you, and worst of all, you have to be under 21 or caring for a minor child. No wonder so many poor people have children. Of course I'm over simplifying things a bit - many social and cultural factors contribute to large and growing families trapped in poverty - but why add fuel to the fire by making young women get pregnant in order to see a doctor? Who's brain child was that!?
Fortunately two of my children were under 21, and the third is always cranking out babies, so I was at least partly successful at getting them on Medicaid. My son has several chronic medical conditions that have placed him in the hospital on numerous occasions. Without Medicaid, we would owe $30,000 in medical bills, and we can't file for bankruptcy again for ten years. So we are grateful for Medicaid, but we are stunned at how difficult it is to acquire, and we have no idea what our children are going to do once they cross their 21st birthday. In fact, John turns 21 this month, and Beth in August.
Even if you are approved for Medicaid, you can't really rest easy knowing you are covered. Mary has had her and Trent's benefits yanked many times for no particular reason.
"We're running an investigation; please take time off of work, find a babysitter, wait for hours for your overworked social worker to get to you, and jump through these 27 hoops, and we'll see if you still qualify."
Once her benefits were reinstated, she was not paid retroactively for the months that she was kicked off the rolls. If she or her son incurred any medical expenses during that time, that was just too bad. Mary works very hard, and can barely make ends meet; these interruptions just put her further behind. This is one of the many gaping holes in the "safety net" that Mitt Romney extolls. In an interview with CNN, Governor Romney stated,
"I'm not concerned about the very poor. We have a safety net there. If it needs repair, I'll fix it."
He says "If", because he's never been poor a day in his life, and has no clue. Romney enjoys $250 million in the bank and homes all over the country; I doubt he has any first-hand experience with the safety net. I knew then and there I was not going to vote for the man for anything, not even dog catcher, much less president.
As a full time student under 21, Beth still qualifies for Medicaid, so says her social worker, but there is apparently a paperwork snafu, so as of this writing she still has no coverage. Another hole in the safety net. We can only pray she doesn't get sick or injured.
As for us, Wendy and myself, we have applied to Medicaid on several occasions over the past three years, and been rejected each time. We are over 21, have no minor children, and own a car (jointly with the bank). While begging for mercy at the Department of Human Services, we also applied for health insurance through private companies, even though we knew the premiums were well out of reach - running nearly $1,000 a month, comparable to a typical mortgage. We applied just to get more information and cover all the bases. We were denied every time, due to preexisting conditions. You often read articles about the 48 million uninsured, but let's not forget, a significant fraction of those uninsured are also uninsurable. To his credit, President Obama rectified this, finally, but in every other way, HealthCare.gov is a disaster, which I will describe below. Well at least he's trying, at least he cares, and that puts him two steps ahead of Romney and most republicans.
In summary, we have had no healthcare for 5 years. During that time we have paid for the essentials out of pocket: gynecological screenings, prescription meds that we desperately need, and some rather expensive dental work. Other than these pressing matters, we don't go to the doctor; we just don't. Colon, prostate, and breast cancers are treatable if caught early; but we can't afford the tests. Life threatening conditions could be brewing inside us, but that is tolerated by the country we live in.
In October we discovered a new pressing issue, Wendy's vision was failing. She could no longer read the words on her computer screen or fill out the forms that are part of daily life. In desperation she went to an ophthalmologist and paid $300 for a partial diagnosis. He was not willing to render a complete diagnosis unless she went to a retinal specialist, for another $500. Bear in mind, we were simply trying to find out what was wrong; we haven't begun to treat it yet, and we're already in for a grand. As it turns out, She has a fast growing cataract in one eye, and the other is almost blind due to macular degeneration. I told the doctor that we don't have much money, and he said, almost with a smirk,
"Well I can't address that, I can only tell you what you need. If this cataract isn't removed in six months she won't be able to see a thing. Have you applied for Medicaid?"
Here's a man, like Romney, who has lots of money and no worries. He has no idea how difficult it is to get on Medicaid if you are 50 years old, smack in the middle of a gaping hole in our safety net that stretches from age 21 to age 65. He has no clue or empathy as he brushes us aside and moves on to his next patient, who has insurance.
Thanks to 30 years of good fortune, we still have a little in an IRA. Obviously I'm going to spend it, the last penny if need be, to save Wendy's eyesight. But what if we didn't have it? She would simply go blind, totally blind. At that point she would qualify for disability, and would receive healthcare. The United States is willing to pay for her medical services *after* she has lost her sight, whence she can finally be declared disabled. Talk about closing the barn door after the horse has left! This is not just a moral travesty, it is penny wise and pound foolish. Our government would rather pay for decades of disability than a one-time operation to save someone's eyesight. The question for all of us is, how can we live in a country like that?
Even if Obama Care is an option for us, it isn't an option soon enough. Coverage does not start until January, and we can't wait that long. So with more IRA money, which we will have to pay taxes on in April, we saved her eye sight. Today she sees better than she has in years, and only uses glasses for reading. A happy ending I suppose, but the next medical tragedy could be just around the corner. So what is our next step?
Join me if you will in a small thought experiment. The nation has finally decided, after decades of denial, that society is better off if all children are educated. It is the right thing to do, a sound investment in our future. So - how to pay for the schools?
A) Pay for them with taxes, and let the children walk into class for free. Yes, those without kids pay for the rest, but as mentioned above, it is a good investment for society as a whole, so they can take their "taxation is theft" mantra and shove it up their ass.
B) Parents have to pay for school; in fact they are penalized if their children don't go to school. If they don't have enough money they can apply for assistance at the State or Federal level. The state denies almost all applications, and federal assistance is based on your estimate of next years income. The result is not finalized until the year is complete. At that time the assistance may change based on your true income, and on the labyrinth of incomprehensible tax laws that can change your adjusted gross income in drastic and unpredictable ways. So all that assistance you received from the federal government throughout the year, to send your three kids to school, could evaporate overnight if your 1040 takes a left turn at Albuquerque. And taxes, as I have mentioned bevore, cannot be absolved through bankruptcy. They garnish your wages until every penny is paid.
Plan A is simple and straightforward, and makes perfect sense. Plan B is complicated, confusing, frightening, and rife with unanticipated side effects. Who would implement such a stupid plan, especially for something as important as healthcare? Congress of course, with the president's signature, because plan A is socialism, and we just can't have any of that. Sweet Jesus! Every jot and tittle of the federal government is a form of socialism, including your precious military boondoggles, so get over it!
We discovered the first unintended consequence of plan B when we applied in October. I thought income meant earned income, silly me, so with no job and no job prospects I entered an income of zero. I received a letter in the mail about a month later. We do not qualify for federal aid, because our income makes us eligible for state aid. In other words, "You qualify for Medicaid, let the state pay for it, we're not going to help you." But in the same letter, in the very same letter, we are told that our state, with a governor every bit as uncaring as Romney, has chosen not to provide coverage to people in my situation. In other words, we receive no aid from the state either. People with no income, in my age bracket, are simply screwed. Obama Care has nothing for us. Stupid, stupid, stupid - criminally stupid!
Once I realized the assistance was based on AGI, earned or not, then the picture became all too clear. We have lots of income. Oh it isn't real income, it's IRA money that I have to take out to survive. It's IRA money that is now taxable income. But it's not income, it's savings. Doesn't matter, it still cuts into the needs-based formula. We will apply again on healthcare.gov, but don't be surprised if we "make" too much money for government help, even though we don't make any money at all.
Beyond this, healthcare is still thrown on the backs of employers. My boss doesn't pay for my home insurance, or car insurance; why should he pay for my health insurance? Writing this into law is a crushing blow to the economy, and yes, even to some poor people, when we can least afford it. And all he had to do, really, is make the MarketPlace available to the public, without all the bullshit restrictions on companies and employers, and we could have the good without the bad. Sometimes government is 2 + 2 = 5 stupid.
It's hard to believe our government is run by two parties: rich bastards who subscribe to a form of Social Darwinism that would make Charles Darwin throw up on his shoes, and compassionate people who create the most complicated and inefficient programs imaginable. Thanks to these competing and rankerous factions, nobody in our family is covered as 2013 draws to a close. Even Mary has lost her Medicaid again; don't ask me why. May God keep us safe and healthy, because nobody else will.
We applied for disability in September, both of us. Wendy was rejected because Beulah the Buzzer has sounded. If you haven't worked in five years then you get nothing. But I was approved! My sight is completely gone, and nowadays most computer jobs require sight, even in the realm of software development. The folks at the disability office concur, and I now receive, every month, enough money to support Wendy and myself. It isn't enough for my three children, not even close, but there are some opportunities to ratchet things up just a bit. If I can get John diagnosed, he could become my disabled adult dependent. Turning to the next generation, I have without doubt provided more than half of Trent's financial support, and the website says a grandchild might qualify. Clearly we have more work to do. I call and make an appointment for February 18. In the meantime, I have some income, and the psychological difference between a little income and no income at all is like night and day. Praise God from whom all blessings flow. Wendy and I buy a few more Christmas gifts, and then spend some time together in our wonderfully empty nest, remembering that we always were, and always will be, in love.
Subject: Great Full
I'm truly great full to have parents like you and mom I'd be long dead without you and I just want you to know how sorry I truly am for my destructive actions and words of the past I love you guys so so much and hope you still love me too
hugs kisses John
If actions speak louder than words, then we are on the right track. This is the year of snow, and John is out shoveling every day without being asked. This is something Wendy and I could not do. He also vacuums, makes his bed, and moves boxes in preparation for our upcoming move. He seems concerned about us, and our world, for the first time in his life.
His new-found religion is surely part of the equation. He always had faith in God, but now he has vaulted into salvation, and as I have said many times before, this is probably the only force strong enough to pull him away from drugs, so I am grateful. His dealers call him almost every day, trying to reel him back in, but he continues to say no. He would block their calls, but they change cell phones every week. It's a business, and they want to recapture one of their revenue streams, to the tune of $300 per day.
Along with his new religion, John has found a new church, Grace Christian Church. I go to most of the services with him, it's a pretty good church. They don't preach "My Way or the broad highway!", and yet it is implied; you can read it between the lines. John sees it, and gloms on to it with fervor. It's expected I guess, the next step on his path to recovery, but it's damn annoying. He really thinks Beth is going to hell because she doesn't believe, and he frets about it day and night. His religion is like chemotherapy, killing the cancer, but with a few unwanted side effects. Oh well, we'll just have to muddle through.