After a successful surgical procedure earlier this year, a 4-year-old Michigan girl with cerebral palsy took her first steps, and her proud mother recorded every "step" of the …
According to the Centers for Disease Control and Prevention (CDC) in Atlanta, 1 in every 323 children in the U.S. has been identified with cerebral palsy.
One of the questions I’m often asked by people who read my blog here is “When you were a kid, what was it like for you, considering that you have cerebral palsy? Did you play outside with other kids and participate in sports activities? Or did you just stay at home, play with your toys, and watch TV?”
At first glance, this seems as though is a silly question, akin to “Considering that you have a disability, do you ever go on dates?” On one level, it presupposes that children with disabilities, including those with cerebral palsy (CP) are different from children without physical disabilities under the skin. On another level, however, it reflects the fact that other than “inspirational” films such as “My Left Foot” or sappy melodramas along the lines of this year’s “Me Before You,” mainstream culture doesn’t depict the lives of people with disabilities very often.
Because there are an estimated 764,000 (maybe more) Americans with CP, I think that this is an important question. And since it is an important question that parents, siblings, teachers, and curious readers often ask, I’ll do my best to answer it – from a personal perspective, of course.
“Memories of childhood were the dreams that stayed with you after you woke.” ― Julian Barnes, England, England
My mother had many flaws and wasn’t a perfect parent, but she did her best to make my childhood as “normal” as possible. She made sure that I had other kids to play with no matter where we lived. When I was a toddler, she would drop me off at our neighbor Sheila Blanchard’s house while she went to work at a beauty salon she co-owned with a friend in Westchester, one of Miami’s many suburbs. Sheila must have been in her 30s back then and had a son, Robert, who was a little older than me. I don’t remember much beyond that, but we seem to have formed a bond that lasted for many years.
Later, when my maternal grandparents convinced Mom to move back to Bogota, Colombia after my dad’s death in an airplane crash, I had no trouble finding other kids to play with. I had many first and second cousins which were in my age group; since there were many extended family functions in those years, there were plenty of opportunities to play all sorts of games. These ranged from classic board games such as checkers and Monopoly to more physical activities, including games of “Tag” and pick-up soccer games.
Even when I was in an expensive private school that was run by one of my mother’s many acquaintances, I was rarely given the “You can’t play X because you can’t run fast” treatment. Yes, it happened, but it was the exception, not the rule.
“Don’t you wish you could take a single childhood memory and blow it up into a bubble and live inside it forever?” ― Sarah Addison Allen, Lost Lake
When we moved back to the States in 1972, I had a relatively happy childhood despite the fact that as I grew older, the more aware I was about my CP.
Interestingly, I had two circles of friends that rarely interacted. One was the loosely-knit group of neighborhood kids that lived near our house on Southwest 102nd Avenue in the Coral Park area. I think there were around 10 boys in our band of brothers; a couple of them had sisters, but since I had a girlfriend at the time, I paid them little attention. My disability wasn’t too much of a factor – except in one respect: I was the only pre-adolescent boy in our block who could not ride a bike.
My other group of friends came from the Special Ed Department at Tropical Elementary School. With rare exceptions, we could only interact while in class or during lunch and recess. We all had different temperaments and physical limitations; most of my disabled friends used wheelchairs to get around, but a few could walk, more or less, unassisted. Some of the kids were almost always cheerful and pleasant to be around, while others could sometimes be mean little bullies or sink into depressive states.
My own emotional state varied, depending on the circumstances. Most of the time, I suppose, I was a quiet, studious schoolboy with the same wants and needs of the average elementary school boy of the 1970s.
I had good days in which I behaved well and was Mr. Congeniality in the classroom or during recess. I also had bad days when I’d be rude to one of my teachers or have a temper tantrum because I was losing at a board game. I was neither an angel or a devil – I was just a kid with a few emotional issues.
Because I had these two different social networks, I didn’t have as hard a time playing and socializing with kids my age as other kids with CP did, at least not before my middle school years. Maybe it’s because I rarely felt like an odd duck back then (except when it came to bikes or, later, non-disabled girls) till I was a teenager.
Maybe it’s because my CP was not as severe as that of some of my other friends with the disability. Or maybe it’s because my mom never treated me as if I was this broken little toy that needed to be kept in a cushioned package so it wouldn’t break.
“The child I was is just one breath away from me.” ― Sheniz Janmohamed, Firesmoke
That’s not to say that I wasn’t picked on or made fun of because of my disability. I heard more insults, taunts, and jeers than I care to remember from kindergarten all the way to what we now call middle school. I experienced rejection, too. Not only from girls I was attracted to, but from guys that I wanted to hang out with because they were supposed to be cool, hip, or with-it. (It probably didn’t help that I liked reading, didn’t pay too much attention to professional sports, and wasn’t into disco or hard rock music.) These insults and other indignities didn’t kill me, of course, but they left some hard-to-heal emotional scars.
I suppose what one can take away from these recollections can be distilled into the following points:
Children with cerebral palsy need to play and be with other children. They aren’t alien beings from the planet Zardoz; they’re kids with the same emotional needs as non-disabled children.
Every child’s life experiences will be unique, My older half-sister, who also has cerebral palsy, was born 13 years before I was, so her upbringing was vastly different from mine. Mom lived in Colombia then, and because she was a flight attendant with Avianca (Colombia’s national airline), she was gone a lot and Vicky was raised by my strict grandparents during her formative years. She had, and still has, a lot of anger- and impulse-control issues, so her childhood was spent mostly in strict Catholic boarding schools.
She was also the product of an unhappy marriage, which no doubt influenced her emotional and spiritual development. By the time I came along, Mom was more of a stay-at-home parent and was there for me more than she was for Vicky.
The type and/or severity of the disability often determines how much, or how little, a child with CP can play and interact with non-disabled kids. My CP doesn’t limit my ability to walk or climb stairs, for instance, but one of my ex-girlfriends from “back in the day” needed to use a wheelchair to get around.
Children with mild CP symptoms should be encouraged to participate in team sports if they can do so; kids with more severe manifestations of the disability might do better as computer or console video gamers.