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.
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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?
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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.
When I was in high school a friend of mine had been in an accident and was in a wheel chair. I used to help her from class to class and I would push her chair even if technically she didn’t need me to. Made me feel important. Eventually she didn’t need the chair anymore and at that point I would help her anyway, carrying her backpack because it meant we got to leave class early together.
I think that’s probably what’s happening with Sarah Kate, too. The kids feel important and it makes her feel special. I had a friend growing up who had lost one eye in a car accident when she was little. She was forever having an issue with her glass eye (most of which were bogus, I’m pretty sure) and would need someone to go with her to the bathroom to “help” her. I feel like I spent most of middle school with her in the girls’ bathroom!
As a 20-yr-old with CP, I can really relate to this!!
I smiled a little when I read that SK told the man at the game that she was in a wheelchair because she had surgery. When I was fourteen, I broke my leg in a really bad spot and had to have emergency surgery to put pins in it to restore the blood supply. I wasn’t allowed to bear weight on it for three months, and I used forearm crutches for about two-and-a-half years afterward (PLEASE tell SK to be cautious when she’s walking, especially if there’s water on the floor or crowds of people…speaking from experience, one bad fall can mean a HUGE setback, especially for people with CP! My doctor told me that I’d probably never walk independently again after my fall. I proved him wrong, but it took a whole lot of blood, sweat, and tears.). When I was in a wheelchair and using crutches, people often asked me why, and it was way easier to say that I broke my leg and had to have surgery than to explain about CP. Surgery and broken bones are relatable and temporary, so they’re much more comfortable to talk about. CP and its permanence is much more complicated, and it tends to attract the pity stares, which I’m not a fan of.
Loved this post!
Thanks for sharing! I worry about her falling all the time now, whereas in the past (pre-surgery) it didn’t bother me at all. She got plowed by one of the 4th graders at running club the first week she went back – she wasn’t seriously hurt, just some pretty bad road rash – and I secretly hoped she’d decide to wait to go back, but no. She wanted to go back the next week.
My daughter has Sticklers syndrome, which included a cleft palate that has been repaired. She attends speech therapy but is still very difficult for strangers to understand. Because she is very small for her age, 6, I almost always let people assume that she is much younger. It’s easier to let people think she is talking like an average toddler than to explain that, yes we are aware of her speech difficulties, yes she is getting therapy, and this is why she talks this way.
Great point! I also do that with Nathan sometimes. Although I think most people know (or at least suspect) that he has Down syndrome, if someone doesn’t seem to notice and assume he’s younger, I just go with it. He’s little and he doesn’t speak clearly so it’s just easier.
“while the wheelchair has its benefits, ambulating without it is preferable”
Really? Ambulating is preferable to using a wheelchair? As a CP adult, starting to use a chair changed my life for the better. I first started using a motorized scooter when I was 16 and I now use a power wheelchair. I also use a cane or a walker, yes, even though I can walk on my own. Why are you in such a hurry for her to ditch the mobility aids? If they’re helping her, if she feels better/safer/steadier with them, then that’s a GOOD thing. And she may find that she likes using a chair. I can go so much farther with a chair than I ever could walking. I can stay out all day like any other 20-something. Deciding to use a chair was the best decision I ever made, hands down. If SK wants to use her mobility aids, that’s completely okay. I started using aids after nearly a decade of walking on my own and again, one of the best decisions I ever made. Walking ability and the emphasis placed on walking can evolve throughout time as she gets older. It’s up to her what she feels comfortable with. I despise this idea that walking (especially without aids) is the be all and end all. If she chooses to use the chair more often there are other ways she can get the exercise that walking full time provides.
I have nothing against the chair, but we (and by we, I don’t mean her dad and me – I mean all three of us together) chose the extensive orthopedic surgical option we did with the goal of getting her back to where she was before the tween growth spurt wreaked havoc on her body. She WANTS to be able to run, play sports, ride her bike, etc., like she did before, and the wheelchair wasn’t part of that (though we did use a transport chair at times when endurance was an issue, and that’s why she’s having a chair of her own made right now – please note that her doctor didn’t initially want to write the script until I MADE THE REQUEST because I recognize she needs more than just canes or a transport chair for the future). I’m not saying that ambulating is better than using a chair. What I am saying is that’s what SHE WANTS. The chair can do a lot of things, but it can’t straighten her legs, which is something she needs to work on in order to reach HER goal of walking/running/sports.