9.12.2012

off to the side

The boy in the photograph—like his classmates standing on the bleachers—is clean-cut, wearing dark slacks and a white shirt. And if it were not for one thing, I’d be wondering why he is singled out, sequestered far from the rest of the choir. That one thing is his wheelchair. The boy has cerebral palsy, and instead of wheeling him over next to his classmates the teacher leaves him off to the side near the door of the gym. From there the boy watches his friends sing.

In his first year of kindergarten, Calvin was that boy. I’d arrived at the school’s gymnasium just as the kinderconcert was beginning. Calvin’s pint-sized classmates stood in rows atop aluminum bleachers on the stage. I looked eagerly for my boy and his one-on-one aide, but they were nowhere to be found. Then, scanning the crowd, I spotted the two of them seated on the floor. I made my way over. “Why isn’t Calvin up there with his classmates?” I asked curiously, disappointedly. His aide explained that they thought the commotion and singing might overstimulate Calvin, perhaps irritate him. I’d have told them that Calvin probably wouldn’t mind.

The kid in the Huffington Post article has Down syndrome. The airline refused to let him fly first class (though his family had splurged on the tickets) citing that the teen was a “flight risk.” Lies about the boy’s behavior had been told by an airline representative who said that he’d been running around in the gate area, though the video his mother took with her phone showed him sitting quietly playing with his hat.

I was visiting Calvin and his aide at school one day last year, or perhaps it was the year before—time blurring into itself because of Calvin’s slow-as-molasses development. We were all walking down the hallway together. Calvin was in the lead followed closely by his aide, her tight grip on his slack harness allowing him to feel his body in space and to learn to right himself on his own. A girl of nine, or so, approached us. “Is he a dog?” she asked me. I knew the girl was referring to the fact that my son was wearing a harness. “No,” I said, “but are you a pig?” She frowned and sulked away.

When I was in grade school, the disabled kids rode their own bus which deposited them with their wheelchairs and braces and spastic limbs in front a free-standing cinder block building, which was off to the side of the school's cul-de-sac. I rarely saw those kids—my peers—I never remember them being on the playground with the rest of us and none of them became my friend.

I'm going to visit Calvin's mainstream second grade class today to talk to them about epilepsy and answer any questions they might have about Calvin, who can't talk to them himself. They'll be sitting on the floor in a group and, hopefully, Calvin and his fabulous one-on-one, Mary, won't be off to the side.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

Calvin with his one-on-one, Mary

6 comments:

  1. I'm so glad that you're mainstreaming Calvin and hope that you'll continue to receive the supports to do so. One of the only regrets I have in Sophie's life is not pushing for that --

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  2. Jack eagerly reported to me that Calvin has been seizure free for 74 days! Jack is so glad to have Calvin in the class. Thanks for helping the kids understand!

    Sara

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  3. dear sara,
    so glad that jack is in his class. a few kids familiar with calvin goes a long way in helping the others warm up to him! jack is so sweet. have we met? please forgive me if we have. i am meeting a ton of folks these days and my mind is a sieve!
    christy

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  4. So many reasons inclusion is so important and you've hit them. The more time we spend with anyone is who different, the more comfortable we are and the more we see each other's humanity. Thanks for sharing this. Heather

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  5. That's so great that you presented to Calvin's class. How did they respond?
    ~Julianna

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