A couple of years ago, Sarah wrote a post, Confessions From a CP Adult, that I saved to my “Post Ideas” notebook in Evernote. I have dozens of ideas, going back over three years, in that notebook, most of which I will never use. But I re-read Sarah’s post recently and in light of the fact that Sarah Kate has now reached the tween years – and is therefore much closer to being a “CP adult” instead of a CP kid – some of what she said jumped out at me.
(PSA Sidebar: If you’re the parent of a child with cerebral palsy, you should read Sarah. Our community needs her and voices like hers to keep us parents in line. Just sayin’.)
Sarah’s Confession #1:
I use my wheelchair more often than I probably should. Sometimes I just find it to be more socially acceptable…It’s easier to explain why you use a wheelchair than explain why you walk funny.
My Confession #1:
It makes me a little crazy to know Sarah Kate is using the wheelchair when she doesn’t need it, and I’m pretty sure that’s happening these days at school. We’re in a weird place right now post-surgery. I’m not going to say that I regret having it done – looking at photos from last year’s Auburn game I can see how terrible her crouch was – but she’s definitely taken several steps backward and her progress has slowed considerably. I’m ready for her to ditch the chair AND the canes.
But…I also realize what Sarah meant. Last weekend, near the end of the game, Sarah Kate and I made our way down the steps to the restroom and picked up her chair from first aid in preparation for leaving. Mr. Andi and Nathan showed up a few minutes later, but while we were waiting for them, a very nice man decked out in orange and blue walked over to her, squatted down and began to chat. He asked her why she was in a wheelchair, and her answer was “I had surgery.”
I’m not sure what he was thinking, but I realized in that moment that “I had surgery” was way easier to explain than “I have cerebral palsy.” And that’s not just a hypothetical – I tried a helpful explanation and wished I’d just kept it simple.
Sarah’s Confession #2:
It is in fact possible to take advantage of having a disability…I don’t do it often. I feel its “bad for business,” so to speak, to do so, but that doesn’t stop me. Every membership must have some benefits after all.
My Confession #2:
With Sarah Kate’s old transport chair that was used only rarely (and which she started the school year with), she needed someone to push her. With the new chair, she doesn’t need a push but we asked that she have someone nearby to assist (at least until she got comfortable with propelling the slightly-too-large chair up and down the ramps). What’s happened, however, is that often her helper (or another volunteer) will push her, anyway.
On the one hand, I want her to both be independent and to recognize that while the wheelchair has its benefits, ambulating without it is preferable (and the long-term goal for most days and most instances) – in short, she needs to propel herself. But a little part of me thinks I should just let it go. She’s eleven, after all, and it’s been a rough year. If her peers want to make a fuss over her right now, is that so bad?
Sarah’s Confession #3
Sometimes I avoid situations because of the social pressure to be a role model when I just want to be myself.
My Confession #3:
I have no idea if Sarah Kate feels this way. I know she often wants to be “just like everyone else” but I think that’s largely a function of her age. For my part, though, I get it. I’m not the type to go around telling perfect strangers about every little unpleasant thing that happens, but like pretty much everyone, I have good days and bad days. However, I do feel a certain pressure to keep the bad days to myself, lest people assume my children’s special needs are the root cause. If I do something to reinforce the conventional thinking that special needs = bad, then I’m doing harm to the special needs community. Sometimes it’s just easier to stay home.