I have had cerebral palsy for all the thirty years I’ve been alive. I’ve been through physical therapy, and surgeries. Yet, up until this week, I had never read a book advising treatment and rearing for those with cerebral palsy. I thought it would be interesting to take a look at something like this, to see how what doctors suggest in 2017 measures up against what I experienced and needed as a child. Most of all, I was wondering what such a text could tell me about my condition that I didn’t know – if, even after thirty years of living with it, there was anything that could change my outlook about it in a meaningful way.
My first big surprise was in learning how closely my upbringing and therapy aligns with the suggestions in Cerebral Palsy: A Complete Guide for Care-Giving (3rdEd.). I wore braces in my shoes through childhood to stabilize my gait while I grew, delaying surgery as long as possible into my adolescence, so as to limit the amount of surgeries needed in my lifetime. The Achilles’ heel and hamstring lengthening procedures sound the same as what was done to my body; the only new thing for helping to stretch taut muscles seems to be Botox injections.
Drs. Miller and Bachrach suggest that parents keep from holding their palsied child back as they attempt to meet physical and social challenges, and to resist overprotection out of fear. I can remember falling down a lot as a kid, and my dad – instead of running to help me up – saying “BONK!” with a smile before offering me a hand. It always made me laugh.
The writers even suggest addressing the disability as part of the child’s identity, instead of avoiding it. I have examples of this in my life, too. I had been a straight-A student until we started to get graded on penmanship. My cerebral palsy made my fine motor skills poor. When I brought home my very first C, broken-hearted and guilty, my father told me that it just meant I was fit to be a doctor someday.
Even before that, when I was just starting school, I had used to fall right out of my chair while I was concentrating on listening to the lesson. I remember asking my father why I had to have a seatbelt installed at my school desk, and his reply: “Because you’re special, kiddo.”
There were plenty of revelations in this book for me, too. Here’s a small one: I was always scolded for what my doctors and therapists called “W-sitting” – sitting with my legs bent behind me, in an upside-down W. I was told I was undoing the stretches for my muscles, and I was in danger of dislocating my hips.
IMAGE CREDIT: MARIO ALBERTO MAGALLANES TREJO VIA FREEIMAGES.COM
Drs. Miller and Bachrach say, instead, that this posture is not inherently dangerous and, if it makes the child comfortable and helps them to sit up straight, it should be allowed.
I also wish that someone had told my family what the writers say: that a child’s ability to walk (or lack thereof) will not improve after the age of ten and, indeed, may get a little worse as the child gains weight through adolescence. I have never been able to comfortably endure even a long trip through a mall, and I remember feeling – all through my teen years – as if I wasn’t a little kid anymore, and I shouldn’t be this fragile. I berated myself for not doing enough physical therapy, for ruining my body, when it turns out that my ability is what it is, and has been since I was ten, regardless of my efforts to improve.
The biggest truth I needed to hear was this: Miller and Bachrach write that it is often harder for those with mild cerebral palsy to come to terms with their condition than it is for those more severely affected. This is due in part to the mildly palsied passing as “almost normal,” so that they frequently find themselves in situations where their physical capabilities are assumed to be greater than they are, so that they must either explain themselves or attempt tasks that cause them some anxiety or trepidation. I have always told myself that I was weak for feeling stress about what I couldn’t do, when I can do so much more than many people with cerebral palsy can. But, while their struggle is great in ways mine isn’t, so is mine real in the ways that it is real for me.