Friday, January 11, 2013


If you want to listen, I will gladly talk. Apparently my numerous post on my years in the world famous Peto Institute and a lifetime of Cerebral Palsy  generated some interest. I've been offered an opportunity to speak at the World Congress of Conductive Education and I was  happy to accept. Between October 9 and 13 I will be in Munich. Perhaps there is some value to others in what I have to say, but I all I can share is how I felt, what I've been through, how it affected me and what happened next. Earlier this year our local Conductive Education Academy had no choice but close. It started years ago, because there were physical and mental needs of kids with Cerebral Palsy that were not being addressed, plain and simple. Not for the founders' glory. Now that the school is shut down, we are back to square one. We might say we tried our hardest. But is it enough for the children? When I joined the non profit that operated the Academy a few years ago I was told of all the issues parents of kids with special needs have had negotiating with school boards, placing the children in regular classrooms. Combining schooling and rehabilitation, but also finding an appropriately challenging environment for their offspring. What the school allowed the parents to do, outside of helping the kids everyday is give them a peace of mind. They didn't have to struggle on all fronts anymore. Without that school, same old problems reappeared. It really made me think about the difference it had made in our small community. It might have been Gainesville's best kept secret, but it made life easier for a lot of parents. I was at some fest or picnic a few months ago when a woman at one of the booths  stopped me. Her child was one of the students at the Academy and she remembered me delivering a speech at our annual fundraiser. It gave her hope, she said. She asked me for my card because she felt I'd be the one who understood. She anticipated a need for an attorney. It felt that without the school present things have  reverted to a state from before it ever existed. She felt her child was not stimulated intellectually, neglected and brushed aside. That the school doesn't know how to handle it. That she gets frustrated with the institution and the boards. Other parents felt the same and were having meetings about it. She never contacted me like she said she would so I don't know if she found resolution or not. But it gives me an odd feeling to think that all those years of hard work were just a temporary fix and left no lasting impression at all. They are struggling like they struggled before. We may say work hard, that we've gotten tired. That it's better to do something for a little bit than nothing. But children with Cerebral Palsy are born every day. And I'm sure they'd find little comfort in knowing we tried. We didn't really solve anything, did we?. That's why I'm still in this. That's why I want to do something, because something needs to be done. This is the first announcement I'm making. A bit delayed, with a bigger piece of news coming in the next week or two, watch this space for more

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