Tuesday, October 18, 2011

What if? Disabilities thru History and the Lucky Breaks We've Had

The Partners in Policymaking class this past weekend got me thinking about chances.  We have been learning about how people with disabilities have been treated and viewed throughout the history of humans.  Disabled people were shut away, if not just killed outright, up until fairly recently.

Up until the 1970s parents of special needs children were routinely told that things were hopeless.  They were encouraged and in many cases, instructed to put their children in an asylum.

Where they weren't given any treatment or therapy.  They were barely treated as human.

You couldn't really blame them.  It was a matter of lack of knowledge.  People didn't understand that with the right types of assistance, people with disabilities could be productive members of society.  In some cases, they didn't even recognize disabled people as human.

It made me start thinking about how easily it could have been different for us....

Our pediatrician was the first to notice something wasn't quite right with the twins. 

She sent us to the Early Childhood area of our school district, and to a neurologist.

Early Childhood began occupational therapy with the boys while they were still babies.  They also showed us how to get in touch with a county worker.

The neurologist ran tests that diagnosed the boys with Fragile X Syndrome.  He sent us to a genetist and behavior specialist.

The behavior specialist got us started on some medications and sent us to Courage Center for speech and occupational therapy evaluations.

Courage Center evaluated the boys' delays and reported back to us - your boys can learn, they said.  We can teach them.

Almost everywhere we went, we did what we were told (the one exception I can think of is the sleep clinic, which is a story I'll tell another time.).  We did what we were told, just like parents 40 years ago were tempted to do and often did.

Nobody said, there's nothing we can do-- put them in an asylum.

Not sure what I'd have done if they had.

Temple Grandin's mom didn't do what they told her to.  And look at what an amazing, productive person Temple has become.  But her mom was a renegade.  People thought she was batty.

I'm not so sure I wouldn't have decided that institutionalization was the best thing for my boys, had these trusted professionals told me it was.  I like to think I would never have done that.  But had I lived and had my family during the time when that was the norm..... I don't know.

I wonder if parents of adults with autism everywhere look at Temple and wonder, what if I'd bucked the system too, and worked with my kid?

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