Friday, February 24, 2012

It's about the kids

My dad was convinced that I should spend every free waking moment exercising, pushing stretching. In his mind, there was no difference between my condition and a story of his friend who ended up bed ridden with some severe injury affecting his legs. The man would focus on his limbs every day, just stare at them even as he couldn't move them as slowly but surely he got control over his body back. At first he could only wiggle his toes, weeks and weeks later he was walking. I don't even know if that was a true story or not, but now we know that learning skills you never had, which is essentially what my disability was and regaining your skills to full functionality are essentially two different things. It would have been very nice, very easy if I could dedicate three, six months to therapy, give it my all and just put my Cerebral Palsy behind me. But the approaches we know, are not short term solutions. Conductive Education, the Hungarian method we started in the late 80's was a commitment for many years if not life-long. The key is to adapt the routines into a way of life that goes hand in hand with other aspects of your childhood. I think the worst thing you could to to me is drive me so hard to make me hate it. Because you can't hate your life. The routines are repetitive, time consuming, often boring, sometimes painful. It was not something that would be over soon if you hang in there. No, I didn't feel like doing it every day, some days I didn't feel like doing it at all. I knew it was important, so there weren't any days I'd just sit around idly, because if I didn't work up a sweat I'd feel guilty. But, luckly, I never ended up loathing my leg braces. It'd be easy to do, with my spastic knees they got more and more painful to put on over the years. But it's life.

 Sometimes you do more, sometimes you do less. Sometimes you're into it, sometimes you don't feel it at all. I think it's not the end of the world. My parents put a lot of work into the physical side of my upbringing. The funny thing about childhood is you emerge as an adult somehow out of the process. And sometimes you want to develop social skills, sometimes you want to have friends over,  sometimes you want to go to the movies or to the zoo  or read a book. It doesn't feel quite fair to burden a child with all this knowledge about how important your exercises are and what will happen if you neglect it, but life isn't fair. It's easier when you grow up with it and it's all you know. And you can take it, as long as you don't hate it. Kids are resilient. But what I wanted parents to remember is that  while pushing, reaching further is very important, but you can't neglect  other areas of life. Because through it all your children are becoming people they are meant to be. Kids are not robots going through routines. Being positive, having a good outlook on life I think is crucial. And as you grow older, as you hit puberty and then your teens and adult years, you focus on other areas more, and it's only natural. School, friends, dating, finding yourself, rebellion, all those things so vital at different stages of life. And with Cerebral Palsy and having to rely on others it's easy to feel that you're not in control of your life and you don't belong.




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