Wednesday, April 13

Asperger's Syndrome

I've been debating writing this blog entry for a few days now, but not debating whether or not to write it, but debating when to write it.  I had really wanted to call my best friend about it first, but I'm having a hard time talking about this out loud to anyone but my husband.  Sounds silly right?  It's not.  It makes me think of the opening passage to The Body by Stephen King.

"The most important things are the hardest things to say.  They are the things that you get ashamed of, because words diminish them"..."But it's more than that, ins't it?  The most important things things lie too close to wherever your secret heart is buried"..."And you may make revelations that cost you dearly only to have people look at you in a funny way, not understanding what you've said at all, or why you thought it was so important that you almost cried while you were saying it.  that's the worst, I think.  When the secret stays locked within not for the want of a teller but for want of an understanding ear."

So with that I will say it; last week Turkey was diagnosed with Asperger's Syndrome.

You can find many definitions of Asperger's on-line.  This is the one I like the best.

It really was a crushing thing to read.  To see it right there in black and white on his neurological-physiological examination report.  To be told that the child you see in your eyes as perfect, while knowing clearly no one is, has a "problem", is heart-wrenching.

I don't like saying it's a diagnosis.  To me a diagnosis is something that is handed out at the medical doctor's office - a broken bone, an ear infection, even more serious things like cancer. I also don't like looking at this like it's a problem.  I have come to see it as another way of being.

When I first read the news, and I think calling it "the news" is a good way to put it; I kept looking at Turkey waiting to see him differently.  Waiting to feel different, waiting for him to start acting differently.  But that didn't happen.  Nor do I ever expect it to happen now. He is the same 7 year-old boy he was before getting the report and my love for him has not wavered.

Once I got over the initial shock, I started doing my research.  The internet can be a big scary place sometimes, especially when looking up anything medically related.  But I looked and found that the world of Asperger's really wasn't all that scary.  I also received a "parents suggested reading" list on Turkey's report.  So husband and I headed off to Barnes and Noble.  Of all the books recommended, I opted to start with Look Me In The Eye, by John Elder Robison.  This book is a memoir of his life with Asperger's (and is set in my own area).  I figured I was better off reading about someone's experience before diving into the technical reading material also recommended.

Look Me In The Eye proved to be a good first read. When Turkey saw the book lying around he said to me about the title "Why would you want to do that?"  Turkey does not like looking people in the eye while talking, unless it's one of his current topics of fascination.  This was the first sign I was on the right path reading this book first (as not looking people in the eye while speaking is an Aspergian characteristic).   I saw many traits of Turkey in this book, and to see how well John Elder turned out, it gave me hope.   I am not sure I would be posting this blog entry without first reading it.

Turkey's report also contained wonderful news - he has an IQ in the top 0.5%.  And his report contained some lesser wonderful news - he also has ADHD.  The ADHD doesn't seem to phase me at all, it just seems to common and manageable to me (not to knock anyone with ADHD).  Maybe it doesn't bother me because it's not related to the word autism.

So now, the news is out there.  Turkey has Asperger's.  My world is not ending because of this.  I am ready to go forward and do what needs to be done to ensure the best possible life for him - just as I always was.

5 comments:

Jessica said...

HUGS! Sounds like you have a great attitude about it and Turkey has a wonderful mother!! :)

John Robison said...

I'm honored that you started with Look Me in the Eye. Did you know I have a new book, Be Different, with greater insights?

Best wishes
John

Anonymous said...

Well said, Kate! ~Erica from WWTG

By: Kate Nadeau said...

Thanks for the info John... I'll have to check out your latest book.

Nikki Mahler said...

Kate....thank you for this post. I needed it. I must get that book for my little boy who will not "look me in the eye".

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