Disabled Doesn’t Mean Broken

Today’s International Day of Persons with Disabilities. I know this because a friend of mind posted this on Facebook and then asked, “How will you celebrate the special folks in your life?”

I think I’ll celebrate by writing this blog.

My message is for parents of kids with disabilities. Disabled doesn’t mean broken. I don’t  much like the word disabled or its little companions: challenged, limited, or impaired. All the words that are used are negative, all of them speak to incapacity or the lack of something that everyone else has. I don’t like that. I don’t buy it.

Three of my four kids have/had learning disabilities. I don’t actually think they have them anymore because they seem to have figured out what they needed to learn; namely, how to make a living and have a life. They’re adults, living on their own, paying rent, going to work, living their lives without a lot of consultation from me. Their special ed teachers would flip out.

When they were in school and we suffered through endless IEP (Individual Education Plan) meetings with teachers who had their little checklists and scores, I honestly wondered, after listening to these experts, if my kids would grow up to even be able to fucking feed themselves. It’s a bleak, bleak picture out there in the world of educational accomodation. Honestly, I’d leave those meetings and want to throw myself under the wheels of the city bus that zoomed by splashing mud on my pants and my IEP notebook.

For a long time, my response to their learning disabilities was to try to engineer their lives. Auditory processing issues? – look at me while I’m talking to you. Difficulty reading? – let’s put that physics book on tape. Can’t sit still? – bring on the meds. When my older son graduated high school with honors and got into UW-Whitewater, I nearly fainted with delight. It was an amazing accomplishment. Yeah, whose? The euphoria didn’t last long. He left college after an excrutiating square peg round hole year.

The bad thing about being the parent of children who have disabilities or are differently abled or whatever the heck you want to call it is that your expectations get the best of you. You basically see your kids as broken and try to figure out how to fix them so they can meet your expectations. But when you live in the world of your own expectations which are, essentially, wanting your kids to do exactly what you did – go to college, get a job, get married -you are doomed to unhappiness – both your own and theirs. They can’t measure up to what you think they should do and you can’t fix them – so everyone has to live in a state of perpetual disappointment and, worse, lack of pride.

That’s so nuts.

I’ve worked a long time to end the tyranny of my stupid expectations of my kids. And to see that they are making a living and making a life. They found what they do well, what takes advantage of their abilities, what they like doing. For my part, I’ve quit giving them college catalogues as Christmas gifts. Stopped looking at what they were doing for a living as a stop-gap before they got a real occupation. Stopped with my stupid judging. Just let go of it. Well, I’m letting go. Let’s not consider it a completed deal just yet.

Disabled doesn’t mean broken. It’s taken me a long time to figure that out.