 | Diary Navigation:
|
August 7, 2003
Interpreter of Maladies*
Just weeks ago, maybe a month, we were considering putting Ivan on drugs. This is not an abnormal routine. Every few months, something happens, and someone or – if we’ve hit the jackpot – several someones, all with various degrees and distinctions tagging onto the back of their names, tells us that Ivan needs drugs. Obviously, I’m not doing something right, because it’s apparent to me that I’m the only person in our house that needs drugs. And right now the strongest thing I’ve got is a half-gallon of ice cream in the freezer and a burning desire to satiate myself with sugar. I even know of a spouse, who shall remain unidentified, that says he can tell when it’s been a bad night by the number of dirty spoons in the dishwasher. If only I could get down to Mexico and pick up some Vicodin or Lithium or whatever is hip these days! Then I wouldn’t need the chocolate chip cookie dough at 10pm.
Actually, dealing with Ivan’s medical entourage is quite a bit like handling the in-laws. You bend over backwards to communicate something, and they ignore your every thought, wish and desire, yet you’re bound to them by this tenuous thread, and you know you can’t really break it off for good. Oh, you can leave for another practice, but you’ll always need some condescending MD to sign for an anti-biotic or to scold you for not letting your kids have the chickenpox vaccine. I imagine it’s fairly typical to feel the same way when you’re the parent of a normal kid and you’re haggling with the nurse between a same day appointment for feverish Junior, or one three weeks away. But autistic kids, as a rule of thumb, have a variety of strange maladies, and diagnosing and treating these troubles could make for a full-time job. And the only thing more difficult than living with these stranger interlopers is getting the medical world to listen.
Take Ivan for example. He’s got a laundry list of weird problems – eczema, severe gastro-intestinal problems, a history of scarlet fever, teeth with almost no enamel, a history of acute infections followed by very high fevers, a severe reaction to his last vaccination – and yet it’s been nearly impossible to get a doctor to interpret these as indicative of a immune-system problem. This seemed apparent to me. Whenever a virus began the rounds in our home, Ivan would get it within a few days, and still be sick long after everyone else was healthy. Before Ivan was diagnosed as autistic, he had the worst intestinal-intestinal problems that were only alleviated by taking the milk out of his diet. Still, it took almost a year before we found a doctor who told us that it appeared that Ivan did indeed have a problem with his immune system.
Another fine example is the gluten-free/casein-free diet (otherwise referred to as “gfcf”). Gluten is a protein found in wheat, and casein is a protein found in milk. Basically it means that we have to read labels compulsively, and shop for Ivan’s food at specialty stores. The oddest things have wheat in them. Modified food starch? It’s probably wheat. Soy cheese? Almost every brand, save two (only one of them edible), has casein. Hotdogs? Unless you’re buying kosher, there’s milk in them wieners. French fries out on the town? Only McDonald’s, or certain small restaurants. Other fast food chains fry breaded items in the same grease, resulting in, you guessed it, fries con wheat. When you start thinking about it, taking out milk and wheat is a pretty daunting task. But it’s one that often makes or breaks an autistic kid.
However, we have yet to find a medical doctor who will agree that a gfcf diet can be helpful for many autistic kids. We were, in fact, dissuaded by our pediatrician and every psychologist we visited from even trying the diet on Ivan, though he showed all the typical signs of kids who do well on it. Instead we were pushed to manage Ivan’s behavior with therapy and, if we consented, drugs. To me it seemed a no brainer: try a diet that, while difficult, is still nutritious, or put my then two-year old on drugs for the rest of his life. Yeah, that was a tough choice.
Against medical advice we tried the diet. Within a week Ivan was paying more attention at home and in school. Within a month he stopped many of his violent and disturbing behaviors. He stopped pushing furniture over and hitting his sisters. He stopped screaming for hours on end. He was even smiling. Frequently. Still, his doctors were unconvinced. “It’s a coincidence,” one told me. Another said, “Drugs are easier. And if the diet is too hard for the family to follow, then you’ll actually be losing ground.” Ouch.
We’ve stuck with the diet, much to the chagrin of our doctors, who still occasionally bring it up. This is where the in-law analogy works again; there is a strange relationship one has with their physicians. It’s not one based on equality, and is more often rooted in social graces and a strict hierarchy, though one is clearly between generations and the other between science and the public. I know I’m expected to hold my tongue, that we both know that I’m not being completely honest, but that by not expressing what I feel, I lend veracity, even if it’s bribed, to the views of the other.
I know that the diet has helped Ivan, but I rarely state it in such blatant terms, because I know that I need these people on my side, in some fashion. I need them to do things like write letters getting John off jury duty, or dash off a note to our landlord, saying Ivan needs a therapeutic pet. It’s an aggravating dance, because I’m well aware that I never have the upper hand. I know that I need to play my cards right, I know that I can smile and demure convincingly, and that that will make the difference between getting the referral to the exceptional neurologist and the mediocre one.
It was the same during the months where I knew something was wrong with Ivan, but could convince no one else. In the span of ten months, I took Ivan to the pediatrician ten times, each time, excepting the last, being told that there was nothing wrong with Ivan at all. Twice I was asked if I was stressed out. Once I was offered a referral to a psychologist (apparently, I was “angry”). This is not an unusual scenario for parents of autistic kids. Ivan has a schoolmate whose parents were offered parenting classes on one of their umpteen visits to their pediatrician. It wasn’t until they changed pediatricians three times, and had eight visits among those carrying doctors, that they got a diagnosis.
It shouldn’t be so difficult, but it often is. Two months ago Ivan started screaming again. I always look for something amiss elsewhere in his life before I file something under the general banner of autism. It didn’t make sense that he was making gains at school, still, but coming home and having screaming tantrums that lasted an hour, sometimes two. I mentioned it to his psychologist, who offered to call his pediatrician to get a prescription for Risperdal, classified as an antipsychotic, one of the leading autism drugs on the market. It’s a serious medication, and it’s not something one starts without serious thought, or without the knowledge that once on it, always on it. This didn’t sit right with me, but our psychologist is old, familiar, friendly and caring. It’s difficult to reconcile the decent person he is with the guy who wants to medicate Ivan. And that’s the rub. He’s not an ogre. He hugs Ivan, shows him genuine affection, and smiles at us warmly. It would be easier if I could hate him, but I can’t. He must be 80 by now, has a hearing aid and an office full of toys, and has never once chided Ivan for making a mess. He’s grandfatherly and comforting, and so it’s hard to say no, hard to disagree again.
I didn’t this last time. I told him to call the pediatrician, even though part of me thought better of it. We left for home, and I wondered about the side effects of drugs, tried to count and balance the little pieces of everyday life, all the things that were never meant to be quantified. Would Ivan still want to hug me? Would he still pull his sisters hair, or hide from them in the closets, giggling. Would he still kiss them, hug them, wind up his sister’s sucking thumb at night? Would he dance the same, or laugh the same, or glance up at the sky the same? Along time ago, the second night after Ivan was diagnosed, John found me crying in the bath. When he tried to console me, I told him that it wasn’t what he thought. The thing I worried most about was whether or not Ivan would know beauty. I remember saying, “I just want him to know things are beautiful.” Because to me, at that moment especially, there was no human existence trapped in a mind that wouldn’t allow even simple beauty to penetrate. And so, on that drive home, I wondered if medication would change that. If those moments where I knew Ivan appreciated and loved his world would be erased from his life, then really, what’s the point?
I never found out. When his pediatrician called that afternoon, the prescription ready and waiting at the front desk, I let the voice mail pick up. Two days later I was still lingering in limbo, when I took Ivan to his bi-annual check-up at the dentist. The exam would reveal a tooth that appeared to have been infected for at least two months, and it would have to be extracted immediately. A cavity had formed between the cap and the tooth, and to the untrained eye it was completely invisible.
The next day Ivan awoke, happy and calm. And every day since. What’s striking to me is that this is normal, expected even, in the lives of parents of autistic kids. That these strange maladies will turn up, that we will be misheard, talked over, and dismissed. That the ills of our children will be mishandled and mistreated, that we’ll resign ourselves again and again to half-conversations with medical professionals who will cash our checks with more confidence than they will hear our complaints.
It would be easy to read this as a kind of tragedy, but it’s not. There is something sad about living in such a world, true. But there is also something wonderful about becoming the interpreter of maladies, of knowing the small things that balance on the greater ones in a life, and of negotiating the world for your child. Not glamorous, no. And certainly galling. If I had to rate my irritation level after a particularly bad appointment, on a scale of one to ten, ten being the highest, I’d give it an 82. Still, the simple, quiet beauty of knowing is usually worth it. Not always, but enough.
Heather R
*“Interpreter of Maladies” is the title of one of my favorite short stories, written by Jhumpa Lahiri.
 |  |
|
want to keep a diary on iParenting?
Authoring a diary on the iParenting network allows you to chronicle your family's story, preserving it for years to come. It's also a great way to get the most out of the iParenting community. Click here to start...
|
The iParenting Media Awards program helps parents find the best products for their families. 
