Thursday, November 11, 2010

Tourette's (Parents) Uncovered?

So I watched the Discovery Health show, Tourette's Uncovered, the other day. As the parent of a child with Asperger's Syndrome, Tourette's Syndrome, and ADHD, I have to say, it really steams me sometimes at the pain and suffering some parents will put their children through in the desperate search for a "cure".

These parents were having their child undergo Deep Brain Stimulation (DBS), a surgery in which a "pacemaker" of sorts is implanted in the brain, in an effort to control his admittedly severe Tourette's. Although it has shown benefits for other conditions (Wikipedia: Deep Brain Stimulation), DBS is unproven (and unapproved by the FDA) for Tourette's. It was costing this family upwards of a quarter of a million dollars. The main drawback of the kid's Tourrette's? He was teased in school a lot. This kid, near as I could tell, only had Tourrette's, and seemed well-adjusted, and not developmentally disabled or disabled in any other way. Yet he will now have a brain implant in which the risks are significant and their are no proven benefits for his condition.

My son has Tourette's, too, although that is minor compared to his social deficits via Asperger's. He can't make friends in the way we normally think of people doing so. He is an intellectual genius for his age (10), but socially behaves more like half his age. He literally cannot stand or sit still. He needs a one-on-one assistant with him all day at school. He is prone to fits of rage that he cannot even remember, nor recognize as they escalate.

And he tics. A lot. Sometimes he gulps or grunts. Sometimes he blinks. Sometimes it's almost non-stop, all day. Sometimes he'll go days without doing it. Lately, he's been doing the Pee-Wee Herman "Tequila" dance... you know, hands touching in front, then in back, then in front (he's never seen the movie). I suspected it was a tic, but didn't call attention to it until I asked him today what he was doing. He said "I think I remember doing it but I don't know why. Probably just a tic."

Now, am I going to put my perfectly fine... and perfect for who he is... boy through the torture of brain surgery, AND run the family broke, to fix something he hardly notices? And even if he did, and even if everyone else did, and teased the hell out of him, it would at worst be a life lesson that can make him stronger if we teach him and approach it with care as parents.

I am always amazed and upset at parents who put their kids through a myriad of unproven procedures, diets, and treatments in the name of "curing" their autism, Tourette's, or whatever. My son has issues, yes, but I don't know if I'd ever want to change a thing about him. I certainly don't want to "cure" him. He doesn't need it. He just needs understanding and a little help. As we always tell him, there are good things about your autism and bad. He has fits of rage, is awkward and socially inept, but is also a genius with a near photographic memory and a mind that astounds us constantly (even before he taught us how to count to infinty, when he was about 5).

I wouldn't change him for the world, and I certainly wouldn't put him through risky, unproven brain surgery to do so.

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