Tuesday, June 14, 2011

"Autism and eyes closed"

Just for today, I have changed the privacy setting on my Facebook page to "Everyone" in order to reach as many people as I possibly can.
As everyone knows, my daughter Lizzie has Autism.
Or she is Autistic.
Not really sure of the ettiquette...
Anyhow, almost two years ago Lizzie closed her eyes and since then she hasn't really opened them at all. At first she would walk into things (and people) and hurt herself (and people) but since then she has learned to keep her eyes open just a tiny slit or perhaps take an occasional peek, or perhaps she has miraculously developed sonar. Not really sure about this, either.....
This has caused a great deal of anguish to everyone except Lizzie. School feels that it is a hinderance to her learning. The Groden Center feels that it is a behavior to be addressed. Solutions Cedar has suspended Lizzie's PASS hours until this "safety issue" is resolved. Sadly, Lizzie has not been labelled 'Legally Blind' and thus continues to be discriminated against/harrassed/generally annoyed across all settings.
My dilemma: let Lizzie choose to be voluntarily blind as a way to diminish her sensory overload OR- continue down the diagnostic highway with frequent stops at every eye specialist, neurologist, child psychologist, and behavioral specialist along the way. I asked Lizzie if she could hear better with her eyes closed and she said that she did. She also told me to stop talking about it. When I tell her that it is time to work on reading skills, she opens her eyes (a little) and reads pretty well for a kid who really doesn't love to read!
Right now she is wearing a pajama top with blue penguins and pajama bottoms with pink cupcakes- and she is aware of it- and she doesn't care. I don't care either. Every morning she chooses her own perfectly-appropriate clothes for school.
As a parent, I want my child to be happy and safe.
I used to wish for her to be "normal" but now I know better.
I like the Lizzie I have: she doesn't sass back or text incessantly about boys, (she doesn't even like to talk on the phone), she never asks for slutty clothes or a tattoo, she will never experiment with drugs- she won't even try new foods without a major scene.
I believe that Lizzie has the right to be herself: the somewhat-verbal, always-comical, seldom-polite, petite, beautiful girl who hates dogs and snow days and loves perfume and swimming and techno music.
Is there anyone, ANYONE at all, who knows someone or someone's friend or someone's neighbor's dentist's cousin-in-law who likes to have his or her eyes closed all the time??? If so, I'm just curious. HMU.