April 24, 2007

Now let's tackle autism

Living with my autistic son, Riel, has been an education. To put it rather mildly. He'll be 20 in September and for the first 15 years of his life, I was pretty much on my own. If it weren't for my sainted mother, I'd be a basketcase by now.

It all started innocently enough (after a normal pregnancy). He didn't flinch at my touch or avoid my eyes or any of the so-called warning signs. The only thing that worried his doctor was his lack of babbling. By the time he was 2, he hadn't made a peep (other than crying). No "mama", no "dada", none of the usual baby cooing.

So, we tested his hearing. Normal. And we made an appointment to see another doctor for a full range of tests (putting blocks in holes, lining up pictures, etc.). When she said the words, "Your son appears to have autistic tendencies." you could have knocked me over with the proverbial feather. Autism, what's that? And what kind of future will he have now?

Like many of you, my only contact with autism wa
s the movie "Rain Man" with Dustin Hoffman as an autistic savant. The character was based on a real person, Kim Peek, and here's the beginning of a fascinating documentary on him from YouTube:

Click on the YouTube logo in the lower right corner to go to the site which links to the rest of the documentary.

Now, let's get something straight. This is not my son's life. He's not a savant that can count toothpicks in bundles or rattle off complicated math problems. He's autistic, plain and simple and endlessly frustrating.

But, when we've had one of those days, I try to remember how far we've come. Back when he was about 3, we had a full day's testing at a local hospital which shall remain nameless. Hours of tests, EKGs and whatnot, ended with a doctor actually looking me in the eye and saying, "He will never get better than this. He'll never talk and he'll never show affection. It's probably best if someone more qualified were to raise him." After lifting my jaw from my chin, I asked if he meant an institution. He did. Unbelievable. I scooped my son into my arms, thanked him for his time, and said, "I have a little more faith in him than you do, Doc. He's coming home with me." And thus our journey began.

From Day 1, I talked to my son as if he could hear and understand every word, even though he rarely reacted the right way. The first breakthrough came one day when he was getting dressed. I always gave him a choice such as the blue pants or the red pants, just in case he'd give me feedback either way. After months of doing this with no indication from him that he knew what the heck I was on about, I said we'd be putting on the red pants today ... and he reached out and grabbed them from the pile on the bed. Happy tears that day, let me tell you, he finally understood me!

It took a hell of a long time from there, but just after his sixth birthday, he finally started to speak, or babble like he was supposed to have done years before. Magic, it was, pure magic.

I'm not going to go through all the milestones here. Suffice it to say that doctor was full of crap! He speaks in full sentences now, plays on the computer, tells jokes, draws endless pictures of Nintendo scenes, sings (got that talent from his Nana, you'll meet her soon), and still loves good old "Sesame Street."

Where it gets frustrating is when he repeats himself over and over again. And it's hard talking to him about any kind of abstract concept, he just doesn't get it. He had to get dressed up yesterday as he had a job interview with a co-op program through his school. His shirt was a tad tight, but looked great when he stood up straight. I tried explaining the difference in how the shirt looked when he stands like he usually does, a little stooped, and how nice it looked when he stood up straight. No go, he just didn't get it.

He must have done something right, though, 'cause I'm thrilled to say he starts work at Sobey's (local grocery chain) on May 4th. That's my boy!

I have high hopes for this program as we really don't know where he'll end up after he finishes school. It's been an awfully hard decision to make, but I've resigned myself to the fact that he'll probably end up in a group home. I don't want to sound cruel here, but I just can't imagine taking care of him for the rest of my life. Whatever hopes and dreams I may have had 20 years ago for my own life were put on hold. That's what mothers do. I'm nearly 43 now and I'd like to think I have some kind of a future too.

When I started my website 11 years ago I avoided putting any pictures of my son online. As a single mother I was just too paranoid. I also avoided putting my own mug out there as I've battled with weight all my life and am not pleased with how I look. But, in the spirit of how proud I am of my son, here's a peek at my boys and I this past New Year's Eve, the first time he's celebrated with us.

That's Riel on the right. George, on the left, is six feet tall and, when Riel stands up, they're chin to chin. Big boy, eh? I'm pretty damn proud of him. He's come so far and the future is still wide open.

If you're curious about autism, CBC News has a nice list of links.

And there are some pictures Riel drew on our old computer right here.

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