Wednesday, June 10, 2009

Cat herding

I often get advice from people I talk about my problems to that parents of autistic children should organize and rally. There is power in numbers they say. And they are right.

The difficulty is in the fact that herding cats would be easier.

Organizing rally with critically ill patients all hooked up to IV would be easier. Media would come. Just picture procession of sickly looking people in hospital gowns all pulling IV units marching through the streets. Big dramatic picture. But IV units would not scratch or bite themselves, attacked one another, have meltdown or dashed on the street in to oncoming traffic.

But it can be done.

Sunday walk was a lovely event and great success. A lot of energy and enthusiasm and work was invested to organize. Cheerful looking, feel good event with balloons , clowns, music, and teams of people in colorful t-shirts. It felt great to be there to feel the brotherhood of other people who go through similar experiences.

And then what? We go home. Over thousand of little kids are still on hoplesly long wainting list for treatment missing their window of opportunity for recovery, or waiting to get on waiting list, others are kicked out of treatment prematurely, thousands go to scholl where they do not have suffitient support to learn. Tantrums, selfinjury , divorces, nervous breakdowns are going on in privacy of thousands homes.

Sun is shining and lives are being destroyed and kids who need help silently slide everyday deeper into mental disability. People who have power to change the situation are not interested. Kids go home with their parents. Out of site out of mind.

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