Friday, July 28, 2006

following the clues

So it was time to begin our search for answers as to what was "wrong" with Jacob. I know not everyone will like the word "wrong", and my Mom still to this day insists there was never anything wrong with him. But there was so much that just wasn't RIGHT. So I think it's as good a word as any.

I had been posting about my various frustrations over the past month and a half on a parenting e-group I was a part of, and finally I just asked if anyone had any idea what was going on with him. I recieved a few replies, a couple with dead-end suggestions, but one that pointed me in the direction of "The Out-of-Sync Child" by Carol Stock Kranowitz, MA. I immediately ordered the book from Amazon, and read it in one sitting. I could see Jacob all over those pages, and everything she said about a child with Sensory Integration Dysfunction (relabled Sensory Processing Disorder in recent years) certainly seemed to apply to Jacob. I was excited that at least I had a direction to look in, and I felt that SID was at least part of the answer. It explained his fear of water, his dislike of being touched by others, his aversion to sudden noises, and many other minor items that added up to him seeming very uncomfortable with himself.

But there was so much about Jacob that wasn't covered in those pages. No mention of repetative behavior, video scripting, inability to grasp abstract concepts, his problem understanding directions from us. No mention of preoccupation with letters and numbers, the ability to draw recognizable pictures from memory at just 2 yrs of age, the lack of a development of imaginative play. So I kept searching.

Not long after discovering SID, I was visiting a friend with a same-aged child. I was completely floored by this boy's ability to come up with intricate imaginary stories and games, the fact that his parents spoke to him in full sentences and he understood. AND replied in full sentences. Previously I just believed the boy to be some sort of genius. I now feared that the boy was just your average, typical 2 1/2 yr old. What did that mean about Jacob?

While visiting that friend, I share with her my worries about Jacob. I told her about SID and how I thought that answered some of the problems. She asked me what the difference between SID and Asperger's Syndrome was. I started answering her, knowing that I read about the difference between the two in the book, but then realized that I didn't really know what Apserger's Syndrome was. So I left it with a lame "There's a difference, I'm just not sure what".

But when I got home, I did a google search on Apserger's Syndrome and started reading everything I could find. For the first time, I was reading stories of kids that, while not just like Jacob, were similar enough to make the hair stand up on my arms. But the literature was confusing -- some said it was no big deal, some said it was mild Autism, some said it was just quirkiness, some said it required the same treatment as any other form of Autism. Most were very encouraging about good outcomes even without treatment and pointed towards Bill Gates and other famous brilliant people. Some were discouraging and spoke of lifelong impairment in social abilities and clinical depression. I found my way to the Oasis site, which was so helpful that I ordered their book, and joined a couple of AS internet lists.

And I started reading about Autism Spectrum Disorders in general, though I pretty much disregarded anything I came across that wasn't specifically about Asperger's. I felt that we were closer to an answer than we ever had been. So I kept on reading.... Posted by Picasa


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