Tuesday, October 9, 2007

Siezures and Society: People prefer brain surgery & cancer to autism.

Nicholas, like many kids with ASD has a seizure disorder. He takes meds and we keep it under control. We monitor his seizures on a regular basis, which means he gets hooked up to a portable monitor and we live with it for 24 hours. We go to a hospital or a sleep clinic and have (16-24) electrodes slowly glued to his head (yes, he hates it). But after many many sessions we have learned how to strap him to a "papoose" board and hold up a mimi DVD player with his favorites to keep him still and occupied while the equipment gets attached. Moving on, when they are finished connecting the wires they begin to wrap his head in gauze. It's heavy gauze and it's wrapped all around his head and under his chin...now instead of looking autistic he looks like he has had brain surgery or perhaps cancer.

Imagine this, when we come in the building and he being Nicky, cute kid, funny noises, funny movements with a mom who seems to be repeating herself and working hard to keep his hands of the elevator buttons. The looks range from indifference to uncomfortable to curious - but not sympathetic or compassionate. When we leave and his head is bandaged the looks shift to empathy and compassion and I can see they are thinking "poor kiddo I wonder what happened".

I've grown to love these days out. People try to help us, instead of get away. We don't get any of the negative energy that comes with ignorance and fear. It's always a good day for us. I told my daughter that we should wrap him up when ever we go on outings. Imagine how great it would be if we got that reception at Disneyland instead of - "hey lady can you shut him up, we have to stand in this line too".

Conclusion, people prefer brain surgery and cancer to autism. They can be compassionate about these illness' because they understand.

So ladies .... get your gauze, wrap your kid, relax and go enjoy your day!

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