Saturday, September 17, 2011

THE LONG WALK

This has been the season of nail-biting for my wife and me.

After years of steady progress in elementary school, the Little Rankster went into Middle School this year. He’s now learning to deal with the constant changing of classrooms, dealing with the locker, changing for P.E., etc. It’s a lot of change to throw at any kid—especially one on the spectrum.

The biggest change has been that he now rides the school bus. It’s not the “special” bus; it’s the “regular” bus with all of the neurotypical kids. And that’s a bit scary for us as parents.

We’ve tried to use it as an opportunity for fostering more independence. We only walk with him for about a third of the two-block walk to the bus stop. But it’s so difficult sometimes to let go.

This was the conversation the other morning as we left the house:
Dad: You don’t mind if I walk all the way with you, do you?

LR: Actually, I’ll just kiss you good-bye here.

Dad: Okay. But then I’ll walk you all the way.

LR: Actually, Dad, you’ll just walk me half-way.
As I watched him walk, weighed down by his backpack and his trombone, I thought back over the journey thus far.

I remembered the conversation when the developmental pediatrician gave us the Little Rankster’s diagnosis. He had three pieces of advice. The first two items were to put him on Ritalin (a recommendation for off-label use, by the way), and to immediately put him in a “special” school where they would know how to “best deal with his problem.” The third piece of advice was to get on the waiting list for an institution, because the likelihood was that he would never speak or be able to function in a mainstream environment. I was in shock, but my wife was energized into action. And her reaction saved my son.

So here we are now, with a boy who attends school in a mainstream environment without an aide. He plays—and even excels—in the school band. In Elementary School, he sang in the chorus, and served on the student council. To be sure, there are still struggles and issues, and we’re not finished yet. But the progress borders on the miraculous.

It didn’t just happen. There’s been a lot of work. There has been lots of biomedical intervention and assorted “voodoo.” There have been weekly visits to speech therapists, and summer programs to work on one thing or the other. There was a move from our beloved home to another state to have better access to services, and to be closer to a remarkable physician who has had an immeasurable impact on our family.

Through it all, there has been one person who’s worked at it harder than my wife and me. And as I watched that person walk to his bus stop, I came to a realization. Sometimes a one-block walk can be a hell of a long journey.

4 Comments:

Blogger JEGjr said...

thanks Wade. I sure hope that i'll be able to say the same things as you some day.

9/25/11, 8:50 PM  
Blogger JEGjr said...

hey again Wade, I read several of your posts, and noticed a reoccuring argument that you also come across. The - "the rise in autism is due to better diagnosis processes" crap (pardon my french). I'm not sure if you've heard this one before, and I'm not the inventor of it, but, it buries that lame argument. IF the rise in autism is simply because we're diagnosing better nowadays, THEN why don't we see 1 in 100 middle-aged autistics walking around? IF it is simply better diagnosis, and not truly a rise in the number of affected individuals, THEN certainly we should see the same ratio of adults with autism walking around as we do with our kids! But that's NOT the case.

9/25/11, 9:18 PM  
Blogger JEGjr said...

me again, again. Found it: "We are in an autism epidemic, with one in 100 kids, roughly, now identified as autistic. Perhaps you think there’s better diagnosis going on than there used to be, accounting for the apparent increase in numbers. If that were the case, there would be a “hidden horde” of people in middle age and older who are moderately or severely autistic, and they would be undiagnosed. Do you see such people around? At the rate of one in 100? They’d stick out in a crowd. I don’t see them, either." http://phylliswheeler.com/CuringAutismBlog/?p=471

9/25/11, 9:28 PM  
Anonymous Anonymous said...

You're very lucky he developed language and has low enough behaviors he is able to be mainstreamed. Many parents try equally as hard with the biomedical and therapy yet this never happens so they have no choice but to place their child in a "special school."

10/11/11, 3:03 PM  

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