Tuesday, May 10, 2011

Help us help more kids: The American problem

My parents went to extremes to provide the best forms of therapy for me. My dad took on extra shifts and part time jobs and worked abroad only to make me better. We've tried many approaches to rehabilitation and I could easily write a little essay on what worked and what didn't in all of them. Some were more active, while others, entirely passive.  I think we started with the Bobath Concept, fueled by theories of brain pathway regeneration, that came to prominence around the time I was born. Years later, when I was 10 we heard of this American method, and it seems the entire cerebral palsy world was doing "the Doman". My mom even decided to go to Philadelphia, from Poland, mind you, and took what I believe was a six week course during which she saw pictures of functional people with half of their brains removed and she was learning that in order to walk, a child must first learn to crawl and move around on all fours, breathe in a plastic bag with a straw and have other people move his limbs in a routine called "patterning". I even had a priest massage me with prayer and alcohol. If there was some other, better method, we would have tried it.  The one thing that really made a difference was the time, months and months spent in the Peto Institute. I've done other things laters of course- My parents would make me go to a pool at the point of screaming and I'm a great supporter of hippotherapy. The Institute  made me mobile, made me walk with sticks and in braces but still [ As I was growing up later I had to give it up as the setup became painful and time consuming.  I really don't like the English name for the Peto therapy, Conductive Education, as it makes it sound like some form of experimental school. The fact is, Conductive Education never promises miracles but has a track record that speaks for itself. It's not a magical cure, but it's hard work based on  principles similar  to your gym routine or aerobics. It's repetition, tailored exercises, perfecting the movement, challenging your body.

I understand that parents are not very trusting when it comes well being of their children and getting their hopes up, but I was amazed how a method that's been around for over 50 years is still not getting widespread recognition in this country. It upsets me and everybody at JKF, because for CE to take it's full effect you need to start as soon as you can. It appears that many children in America are diagnosed with CP very late. The Peto method will still benefit them, but you will not accomplish what you could've otherwise. The second problem is finding a way to pay for that epensive therapy. We are offering it through our Gainesville Academy, which is a charter school. Florida has a system of McKay scholarships in which the parent can decide to take their child from public to private school and the money will follow. While this is a good way to offer conductive education and have it paid by the State, it's available to children K-12. This means that by the time they reach kindegarden, but the time they get to us, it's already late. There's also a fairly viible problem of the lack of information. A lot of American parents don't know they have options, that there are things they could try, that there are alternatives to just sitting them down in a chair. We sense a lot of fear and resentment from some healthcare providers who view CE as competition. I have never heard a conductor [CE therapist/teacher] try to turn anybody away from their current therapy routine and I believe a lot of forms of treatment can compliment one another. But one thing is crucial. CP children need therapy.

We have to reach into the communities in America to educate the parents so they can help their children before it's too late.

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