Wednesday, September 14, 2005

Why a lot of developmental science is a crock

I've just been able to read the summer issue of Brain, Child--which was misdelivered, I guess, a couple of months ago. A really great magazine for all types of parents, if any of you are curious. This month, Jill Cornfield, a parent of a special needs child (PDD), wrote about an obnoxious article she was handed, apparently repeatedly, by PICU staff and friends. It was called, "Welcome to Holland," and its point was to compare parenting a special needs child to having your vacation detoured from Italy to Holland--you learn to love tulips instead of whatever flowers grow in Italy, etc., etc.

I had never heard of this article. And I am certainly glad that no one ever tried to hand it to me. Some other mothers Cornfield cited have written spoofs of the article, comparing their parenting experiences to moving to Beirut or Afghanistan. Sounds about right. I think my family is in the phase where Kabul is secured and there's electricity and running water most of the time, and people generally can find work. But if we venture out into the provinces, we take our lives in our hands.

We took Robert to Vermont this summer, which was good for everybody in many ways, but the physical fatigue of dealing with him without much respite care was difficult. My parents are really too old to be lifting him. They're troopers, and they try, but a lot of his care is beyond them. Tube feeding is an art, not a science. He takes 6 different medications with dosing schedules that involve a certain amount of precision and appropriate spacing. He can support some of his own weight when you help him stand and walk, but he's close to 60 pounds by now. I can still lift him, but not for too much longer.

The part with electricity and running water is that he's really a good kid--he's worked through his tantrum throwing phase, and is generally patient. (Although I sometimes worry he's a little too patient.) He can at least answer yes and no questions, so we can communicate with him a little bit.

Anyway, it's a good thing no one ever handed me that article. I say the following not with any sense of pride, but as examples of the pressure parents of disabled kids are under on not just a daily basis, but an hourly basis sometimes. Sometimes minute to minute. I have called a speech therapist a Nazi and made her cry. I have reduced a prominent development neurologist to bewildered defensiveness.

I called the speech therapist a Nazi when I was about 7 months pregnant with my daughter, and was quite imposing on a grand physical scale, if you know what I mean. She wanted to run him through various developmental tests and then come up with an "age" for him. I had been through this routine several times already and was looking for someone who wasn't going to do that. They assign an age value to each of Robert's physical and apparent cognitive abilities. Then they average the physical scores and the cognitive scores, then average the two of those to come up with an "age" that he's supposed to be. It makes absolutely no sense, at least not with Robert's set of disabilities, which we suspected were primarily motor problems. They play neurologist and try to assign neurologic deficits to various motor issues, even if the child's basic problem is not a developmental disability. There's a difference between developmental delays caused by medical problems and developmental disability. Our neurologist had advised us to stay away from that stuff because it wasn't going to tell us anything.

So she kept at it, and kept treating my son like a puppy and talking about his limitations, and I finally called her a Nazi and stormed out.

Ditto with the developmental neurologist, who we did not understand specialized in developmental problems. He kept testing the cognitive abilities of a child who had difficulty initiating movement (unpredictable, like Parkinson's disease) and who had no effective method of communication. And he wasn't really getting anywhere because Robert's scores were all over the map. We thought he was doing this as a precursor to helping us manage medication treatment.

We finally asked him what he was doing and why he was doing it (he was saying something like Robert couldn't actually have answered something correctly because Robert was unable to answer questions from the previous level correctly, so that was no proof that he knew level 2). He said that he was trying to help us understand what Robert's limitations would be, so we would know what to expect. I asked him why he thought he could predict Robert's life-long abilities when Robert was only 3 and that I thought it was counter-productive to hypothesize about limitations in a child that age. He said that of course we could tell what all of Robert's deficits were at that age, and that people came from as far as Albany to hear what he had to say. I told him that I thought he was a quack, and that development science was bunk (so what if you can identify normative parameters for development? when you can actually talk about the differing developmental pathways that disabled children take & not just the multiple ways that they fall off the normative band wagon, then come and see me). I also told him that a doctor told my mother I would never be able to read because I hadn't crawled before I walked, and I had not only taught myself to read entire books by the age of 5, but also had a doctorate now. And I asked him why he thought his advice and opinions were so infallible when 30+ years ago, some other doctor thought he was infallible, too, because it was in a book. He didn't have an answer for me, and I really thought he would cry, and he kept arguing with me, so I stormed out.

I am not always a good person. I do not listen to others enough. But I do know my child, and he's been able to learn math concepts at about the same level as his peers, without having been able to manipulate objects with his hands, without being able to speak. I guess he just pays attention in class.

No comments: