This will be the most personal post you’ve ever seen from me.

My son has autism.

autismowlI try to keep a fine line on the blog between my personal life and my work. Today though, I just can’t. Words are my only way to tip the scales. It’s literally all I have to work with.

Today’s confirmation of Betsy Devos, and the move to remove the protections of the department of education have hit us pretty hard, since, during her hearing, she couldn’t even define IDEA, which is the Individuals with Disabilities Education Act. It’s what guarantees my son gets a seat in the classroom.

This nominee has indicated before that she doesn’t think D should go to school. He’s capable of education. He cannot talk, and has no hope of future occupations. However, he also won’t be parked in some institution thanks to the education he received in Missouri’s State Schools for the Severely Disabled.

It was IEP time last week. It’s a meeting where the parent and the school make a plan for the coming year, and we choose his goals. One of those goals is learning to sign his name free hand. Not just tracing it. Signing it.

I never dreamed we ‘d get to that goal. Never.

D was in diapers til seven. He had screaming fits and couldn’t be taken out a majority of the time for three years in his early childhood. His sensory distraction is significant, and I never dreamed he’d be able to sign his  name or sit in a classroom and play a board game with his friends.  Yet, we are, and that’s because of IDEA.

The decision of our society to treat my son like a person was responsible for these milestones. He goes to school each day with a purpose like any other child, and he learns how to clean up his work space, sort silverware ( which is more of a challenge than you might suppose) and he learns how to connect with others.

Today, we may have chosen to take that apart and pull up the ladder for the children being born this week with Autism,  1 in 68 in this country, to be specific.  My heart hurts.

4 thoughts on “This will be the most personal post you’ve ever seen from me.

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      1. It’s not new. This was the state of things before, and the discrimination has always been there, even among school boards and administrators we’ve dealt with who’s actions showed they thought speech therapy wasted money. The disabled have always needed advocates. They need them even more now. The moment our society starts to see them as wasted space we will lose our humanity. Some of the comments I’ve read about quality of life will chill your bones, and what they translate to is; I don’t like confrontation with my own fragility. What we’re fighting is something elemental, the caveman tendency to expose the weak to the elements. It’s unbelievable that it still exists, but we have to fight that. For all our sakes.


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