Thursday, June 15, 2006

Here I go again

I don't even know how to start writing about this. How about 'I can't f*cking believe it". That pretty much sums it up.

Backstory - Remember Aidan went to the doctor, and we were told that he had a hearing problem? He's going to get tubes in his ears (again), which should recify that problem. He was also referred to the Paediatric Rehab team. A group of Speech, Occupational and Physio Therapists review his development and then put him on a long waiting list for pathetically few services. I expected that he'd get in for Speech therapy maybe twice a month. He is picking up more and more language on his own, meanwhile. Most of the time he sounds like he hears - a bit underwater.

So the evaluation was going well, until he saw the speech therapist. When he was asked to do some tasks for rewards (bubbles, or candy or toys) he refused. "Uh-uh". He shook his head. The Speech therapist tried a number of strategies to get him to comply. It was all in fun, but he did not want to do what he did not want to do. All familiar stuff. This is not make or break your day sort of defiance. This is not melt down into a nuclear tantrum sort of thing. This is not defiance that makes you wonder if there is a much bigger problem. Aidan said no and he meant it. This is toddler stuff. I mentioned that I am not sure what to do with this behavior. The speech therapist concluded that part of this was Aidan not understanding what he needed to do - which I disagreed with to the degree she was suggesting. I can tell when he is not understanding the limiations or the requests. Othertimes, He puts his foot down and refuses. Both situation I can work with, to a point. Then throw in the chaos factor, and I tread cautiously, not sure how to manoever through the territory. No one said living with a toddler or a preschooler with a hearing impariment/language delay would be a walk in the park.

At the end of her assessment, she gave her conclusion - That he has Pervasive Developmental Disorder Not Otherwise Specified. "But he's got alot of skills. He's very high functioning".

Oh my fucking god.

I can't believe that I am here again.

Then came the good news.

She mentioned that there was a new 20 hr a week intensive program that Aidan would qualify for. I asked many questions. Mostly about whether we'd have the rug pulled out from under us when the program learned just how "high functioning" he is. This is what happened with Owen. When he was Aidan's age, there was so much talk about this diagnosis, but it did Owen no use. He was too normal for funding and provincial programming. Added to the fact that I fundamentally question how loosely this diagnosis is thrown about without extensive investigation (especially when the parent questions an initial assumption) - I just don't throw all my weight into someone's educated guess. This is my kid. And these labels are serious.

I completed disagreed with many of her interpretations and conclusions. This kid does not have PDD. Her interpretations of his behavior, were just that...interpretations. She even went so far to suggest he had a neurological processing disorder, based on a 30 minute consult (the first thirty minutes she has ever spent with this child). If she were more tentative with this suggestion - or at least up front that this was a suspicion...not a conclusion, I'd be more interested in pursuing this. It was the certitude of the conclusions that raised my eyebrows. On the otherhand, I am not going to prevent Aidan a fantastic opportunity to get speech and language therapy on the account of my principles.

The worst thing about this, is that as a parent I feel completely alone. I don't know of other parents who struggle with this. I also don't want to go too far in expressing my opinion, because I am pretty aware that I can be viewed as a nut, and worse, a nut in denial. I am confident in my approach to this situation - that medicalising a different learning process is not only bad for kids, its bad or all of us. This is the sort of stuff that I delve into when I teach Health, Healing and Religion. Medical sociologists and medical anthropologists talk about the medicalizing difference all the time. No one, seems to be talking about it outside of the university.

I feel very compelled to do something - but I am not sure what that would be. I know that there is no point in trying to convince the specialists of my position and view, because Aidan's services are at stake. If I did make the case that this diagnostic process is flawed, then would he get services?

And more in my own defence - most people I talk with, who know Aidan well think these conclusions are bogus. There is much collective eye rolling.

So here it is.

When I told Eric, he sighed and said "Oh least its something to blog about..."

1 comment:

hotboy said...

I've only ever seen ten minutes of the Sopranos. I loved it. The gangster and his wife are at school talking the the teacher about the kid having attention deficit disorder. The joe says wearily: He's thirteen years old sitting in a classroom all day, having erections every ten minutes, no wonder he's figety. Sang to me at the time. Hotboy