Yes, that’s right, readers. It’s ten days before Christmas, a lot of us have only one day left before a well-deserved vacation, and I’m feeling generous. So today, you get a double feature: an extra post. This one concerns one of my least favorite subjects–therapy.
I was formally diagnosed with cerebral palsy at age two, and from what I’ve been told, began occupational and physical therapy shortly thereafter. I would continue going to a local rehabilitation center for these therapies for twelve years.
I never saw anything “wrong” with these therapies, in themselves. The therapists were mostly nice. Sure, sometimes I didn’t like what they made me do, but they knew best. As my parents frequently told me, if I didn’t cooperate at therapy, I would either get or not get something (get punished, or not get a reward or privilege). And without those therapies, I wouldn’t even be able to walk, or dress myself, or brush my own teeth, or ___ (fill in). And if these therapists held such power over me–if their treatment was the difference between being like other kids or not–then I supposed I should obey them.
Therapy could be fun. I remember once, during preschool, a physical therapist pushed me, lying on my stomach, on a big swing, which then knocked over big, dummy-size dolls of nurses, doctors, firefighters, policemen, and all those other occupations. I especially liked the nurse doll.
The occupational therapist who was with me from kindergarten to high school is still a dear friend, and an honorary grandma. She listened to what I wanted to do in therapy, once I got old enough to realize she wasn’t a bad person (she tells me I used to refuse to do anything she said and threaten to tell my mom on her). We played cards and other games in therapy–for fun. She listened to the stories I made up. And when I was older and she found out my cooking class wasn’t letting me do anything significant–even though I really, really wanted to learn to cook–she turned our sessions into Cooking and Baking 101.
One of my physical therapists, at a loss for why I didn’t want to do the special exercises she assigned, asked what I wanted to do in therapy. I told her “ballet steps”–and she taught me some.
But therapy was often not helpful or fun. I was bored with a lot of the exercises given–such as standing upright on a slanted board for 20 minutes a day, which felt like forever. And it made me angry when the therapists or my parents tried to correct the way I did them, as if I weren’t already doing the best I could. Occupational therapists made me practice handwriting–I already knew I wrote like a baby. Why practice something nobody could read? Oh, and let’s not forge the leg braces: knee-high in early elementary school, ankle-high in later years, and a few years of knee-high ones I had to wear at night.
Leg braces are an invention from Hades.
Seriously. They’re basically conglomerations of plaster and Velcro that pinch your legs like lobsters on steroids. And when you take them off, if you don’t have them “broken in,” your feet basically look like mosquitoes bit them to death. Parents and therapists knew they hurt. Everyone apologized. But I still had to wear them, because, “She can’t walk on her toes like that. Her feet are out of alignment.” Blah, blah, blah.
I don’t know if, way back then, I already knew what made me so angry inside about therapy. I didn’t know then why I often refused to do what the therapists told me to do at home–to the point that my parents felt like they had to threaten me with Bo-Tox shots (I’ve had them and they don’t work), surgeries, or confinement to a wheelchair. (I was once told that if I didn’t start doing my exercises, I would have to save up wheelchair money). But here’s what I think.
I’ve been researching and studying the shifting therapy paradigm. To say the least, I find it radical. Many disability advocates and activists are pushing for traditional therapy to be replaced. That is, instead of taking a child to a hospital or rehab center and having a therapist teach him or her to do a pencil grip, we let the child grip the pencil her own way, or use “squish grips.” We make dressing ourselves, brushing our teeth, or walking a certain way natural and fun. Think about it. When you were learning to run or jump, did your parents make you practice it 20 times? Did they give you special exercises so you could do it “better?” When you learned to dress yourself, were you automatically corrected for putting something on “wrong?” Did you have to sit in one room for 30 minutes and learn how to button? And if you got tired of practicing something and cried or protested, did your parents say, “I guess he just doesn’t want to learn?” Were you branded uncooperative?
No. So why do we do this to other kids, just because of a diagnosis?
To make them better, we say. Because otherwise, they won’t learn. And they’ll be dependent forever. Or will they?
Once I decided I wanted to lose weight, I loved exercise–because I had a goal that was outside therapy. I loved seeing those numbers add up.
Once people stopped bugging me, I got dressed on my own just fine.
And here’s a new idea: if my parents called an activity “practice” of some skill–as in, part of therapy–I didn’t want to do it anymore. But if it was just for fun? Sure! The “skills” were just a bonus.
So, think about it. If a girl who loves horses is allowed to go horseback riding–for real–instead of as part of therapy, will she love it and gain physical skill, too? If a boy who needs speech help loves to talk at home, but clams up in the therapy room, what’s really going on?
It’s too late to change what went on in my therapy now. But as my paradigm shifts, so does my understanding of what I can do physically. For one thing, I’d love to try Irish dance. I want to know how it feels to ice skate, horseback ride, or even swim.
And I won’t be watching my feet or wearing braces while I do it.