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September 27, 2007

Devastating

Jean1_2I went to a lecture on social challenges tonight. It was for parents of kids enrolled in the county special ed preschools and it seemed like it might be worthwhile, so I went. And it was worthwhile. I learned some strategies and games I'm going to start using with my developmentally delayed 3-year-old, Jack. But the thing that really got me thinking was my post-lecture interaction with one of the moms from Jack's class.

Within five minutes of meeting her she was telling me intimate details about her child and her feelings about autism. She used words and phrases such as "cure" and "recovered from." She told me she hadn't spoken to a close friend of hers for two years after her friend suggested her son might be autistic. And this got me thinking about the different ways parents look at autism.

I recently picked up a People magazine with a cover story about Jenny McCarthy and her autistic son. Part of the cover's tagline was: "the star describes Evan's devasting diagnosis..." All of this made me wonder: Am I wrong not to be more upset by my son's probable autism diagnosis?

Don't get me wrong, autism can be a very scary word. And I'm not saying that it's wrong to be devastated by such a diagnosis. In fact, when Sam, my oldest, was young he used to line trains up obsessively. And he would layer them in his toy dump truck and rant and rage when one wouldn't fit right. And I was terrified that he might be autistic. All I'd ever heard was horror stories about autism.

Fast forward three or so years to when we made Jack's first appointment to see a developmental specialist. I distinctly remember my sister's blunt question: "For autism?" In my mind, autism was there. It was a big, looming cloud in my imagination, but still her words hit me like a slap. I'm sure she has no recollection of this conversation, and I honestly bear her no ill will. She's a med student and I think she was looking at it as a medical situation. For me, it was my child. My small, vulnerable child. And at the time I don't think I had accepted the fact that he might be autistic.

But then I watched him with other kids. Or, rather, not with other kids. And I read about autism. And I talked to his doctors. And I talked to specialists that I hired to observe him in school. And although he still hasn't been diagnosed, his doctor agrees with me that he is probably on the spectrum. And when it became real for me, when I understood that I have an autistic child, my reaction was not, "Oh my God, what am I going to do now?" It was, "Aha! So much makes sense."

I'm not looking for a cure for my son. I don't need him to recover from his autism. I do need him to learn how to work with it. I need to help him develop skills to compensate for those that don't come naturally to him. I do need him to know that I love him more than he could possibly imagine, just as he is. His autism, his "quirks," are a big part of what makes him the amazing, wonderful, sweet boy that he is. And I am so proud of who he is.

I don't begrudge devastation in others. And I don't mean to imply that I have it more together than anyone else. I don't. And I'm sure there will be many devastating moments in Jack's life. But there have been in mine also. And yours. And we all learn to work with what we have.

I just wish that the word "autism" didn't carry so much fear. I wish that other mothers entering this world didn't have to be so scared.

I think there needs to be more voices out there saying that autism is not the end of the world. It can make it harder, and there are things to be compensated for, but autistic children (and adults) are valuable, vibrant, exciting members of our world. In my mind, an autism diagnosis for my son doesn't signify a dead end, but rather the beginning of a different path.

Jean rambles on and on about the beginning of her son's special ed journey at Stimeyland.

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