Friday, August 21, 2009

Learning to Ride Just Like Everyone Else

Everyone should know how to ride a bike, right? For some children and adults with disabilities, it can be a tricky thing to learn. It takes good balance, confidence, and coordination. My son, Colin (age 12), gained all that this summer by participating in the week-long Lose The Training Wheels program at Union Grove Elementary. The national program was brought to this area by the Autism Society of Southeastern Wisconsin and the Down Syndrome Association of WI. It uses special equipment to modify real bikes so that the rider can ease into two wheels gradually.

I work for the Autism Society and also volunteered to help "spot" several of the other riders. Both Colin and I came out at the end of the week glowing! Colin could ride! He's so proud of himself and he has a "need for speed," so he loves his new-found freedom of zipping around on a bike. I was touched by the participants I worked with. One was a young woman, fifteen years old, and mostly non-verbal. By the third day she was riding a bike for the first time in her life and we all knew she was happy when she broke out in song as she went around the parking lot. I couldn't help but join her in a few verses of "Michael, Row The Boat Ashore!"

I'll carry the memories with me always of the other kids and parents, the wonderful volunteers, sponsors and staff, and Colin will continue to glow with pride as he rides his bike, just like any kid his age knows how to do!

Sunday, January 25, 2009

My Autism Awareness bumper sticker no longer defines me.

I removed the Autism Awareness bumper magnet from my car today. I took it off for the car wash, as usual, because I’ve lost them that way. This time, though, I didn’t put it back on.

A friend asked me recently if my life isn’t sometimes “all autism, all the time,” and if that doesn’t get to be too much. I had to admit, a lot of times, it does. I know it’s been too much for my older son. Being the brother of a kid with autism has been a major theme of his life. I do love my work, which involves giving referrals, information, guidance, and advice to parents, teachers, other professionals, and sometimes adults on the Spectrum. It’s purposeful and rewarding. But then I go home to autism.

At one time I needed the bumper sticker; and the t-shirt and the jewelry. I hoped these things would offer a shorthand to explain my “bad parenting” to insulting strangers. Certainly, people ought to be aware of autism and how profoundly it affects so many people’s lives.

But can a bumper sticker really do all that?

We are all so much more than a bumper sticker. My son is who he is: wonderfully and perfectly and happily, Colin. I suspect that without the autism he’d still be a handful – defiant, busy, active, sassy, and a challenge to the most patient parenting skills. There are places we still can’t easily and comfortably go and things we can’t do that other people get to do all the time. But want to stop fighting it, stop being angry and feeling gypped. I’m learning to accept, to be content. I’ve decided it’s unhealthy for both my children to be raised to think in such restricted terms about life – theirs or mine. There is so much we can be and do.

At the same time, autism has given me a purpose. It’s given me a job that I find satisfaction from after two decades of wondering what the hell work was for, other than earning money to get away from work. Autism was the catalyst that gave me something, finally, that I felt strongly enough about to get me writing, something that I finally felt I had something to say about that might be of value.

So while I intend to no longer allow it to define my son, define my life, I thank God for the opportunity to live my life a different way, to slow down, to enjoy, to be content, and aim to provide the same for my children and the people I talk to who might feel freer doing the same.

Thursday, January 1, 2009

Acceptance is not giving up.

Parents who are focused on curing their children of autism will continue to hear "acceptance" as "giving up.” I’m realistic: these things take time. The proven cause and cure will not come during my son’s childhood, and probably not his lifetime. Curing or “recovering” him with special diets, supplements, and dangerous treatments such as chelation or hyperbaric are pipe dreams. People do these things, see improvements that would have happened anyway, and think one has to do with the other.

I put my energy on improving his quality of life instead of chasing pipe dreams and to love my son for what he is. How is that “giving up?”

Family members who saw my son over the holidays after not seeing him for a year were AMAZED at his gains. He's calmer, his speech is much more interactive, and he comes up with original thoughts. What did we do different this past year? We did NOTHING, except to take him off the anti-anxiety and mood-stabilizing medications. He was taken off for reasons having to do with coordinating and agreeing with my ex-spouse and his household, but I had suspected the meds were not helping, anyway. The appointments and the side effects were sure a major source of stress I’m now happy to live without.

At one time I was sure the meds were making a big difference. If I'd had him on the Gluten-Free diet and saw the gains we saw this summer I would have probably been convinced THAT was working. (Yes, we've tried it -- and saw no results). If we'd been in denial enough to subject him to hyperbaric I might right now be extolling the virtues of that. And so on.

I know parents who throw everything but the kitchen sink at their kid and tell parents of newly diagnosed kids that if they aren't doing the same, they're bad parents. They use heroic phrases like "never give up!" and "do all you can!" to justify their cruelty. It’s a new twist on the one-upmanship parents have been doing since someone’s Junior Caveman grunted at an earlier age than someone else’s precious little Morg III.

WHO REALLY is all that trumpeting and cheerleading for? Are these so-called “Autism Warrior Mothers” really doing all this crazy stuff for their children’s benefit? If they loved their children so much, why do they so desperately want to change them?