Not a Neat and Tidy World

~ Laura

When I wrote about my son’s disability yesterday, I didn’t mean to write a “poor me” post. I adore my kid so much that it is not really that hard to take him to his therapy or to bust the bureaucracy. And I know that I’m lucky that his disability can be managed, that we are seeing progress, and that he has a future full of promise. We really don’t have it so bad.

My point for getting all the other bloggers together yesterday was to tell folks that there are kids out there who have to work harder than others. They have to learn to overcome obstacles in order to do the basic things that we all take for granted — talking (in our case), running, coloring, sitting, and singing. And they are still great kids. Children with disabilities are often pushed into the corners of society and disappear behind institutional walls and private homes. Every once in a while, they have to say “we are here. we are here. we are here.”

I think it is also important to understand the parents better. On top of the bureaucracy busting, therapy schedules, and screaming fits, parents of disabled kids also have to deal with the frowns of neighbors who don’t understand why little Janey has knocked over a pile of cans in the supermarket. In the mad scramble for limited education funds, they have to feel guilty for taking resources away from other children. In a world that increasingly treasures the neat and the tidy, they live in a world that is anything but that.

We received a lot of traffic yesterday, but I could have done a better job pulling people into this project. Still, those that participated excelled at their job — they wrote about the fear, the worry, the work, the politics, and the love. It’s the collective stories that are important here.

The blogosphere excels at telling the personal story. Collecting these stories together can be as effective politically as randomized survey results or regressional analysis.

If you are late to this project and wish to contribute, send me a link and I’ll post it.

Published by Laura

10 thoughts on “Not a Neat and Tidy World”

  1. You are allowed to write an “I’m carrying a heavy load” post. You are. The fact that it is your load and that you carry it gladly and cannot conceive of not carrying doesn’t change the fact that the load is heavier than the ones many of the rest of us carry…

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  3. I posted a story tonight of my daughters openhouse. She is not diagnosed but we suspicion dyselxia along with OCD and CAPD. She’s in the process of testing for a diagnosis now. I’d appreciate if you’d read my post. I just wrote it and I’m awfully emotional right now. I’ve cried all night.

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  4. speaking of neat and tidy, thank you for all you do in grooming and cleaning this blog against the kind of spam comments which you keep having to delete – this morning’s were worse than usual, I think: Do you want to switch to one of the systems in which someone has to type characters into a box before the comment will post?
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  6. A follow-up on the posting I sent you: The Missouri families that would have been affected by the cancelling of the First Steps program took their disabled children to the state capitol and sat outside the governor’s office and the hearing rooms for that portion of the budget discussion. The Governor refused to see any of them, and immediately stated that what he really wanted was just to make sure that those that could pay their own way were not using state money. (Liar, we have him on videotape.) Money magically reappeared in the state budget.
    Moral of the story: a man who is two months away from the birth of his first child should not be taking money away from other people’s babies. A photo-op of handicapped children is a very powerful tool.

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  8. Thank you so much for your post. The last thing I read was ‘poor me’. I would have contributed our story, but I was bit late to your story. I think it is really important to be open and talk about what is going on with our kids, because otherwise they get shoved into a corner. I have recently reached a terrible breaking point as a parent of a special needs child, and am now swallowing every last crumb of my pride and fighting for help. I can say that my own posts have a touch of ‘poor me’. I, like you, would not change anything about my son. He is THE most amazing creature, and I can’t believe that for whatever reason, my husband and I were chosen to be his parents. We take our role very seriously, and sometimes we break down and have a little pity party. It never lasts long, and it’s just a part of how we cope. Again, thanks so much for your post.

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  9. I hope this doesnt get lost down here but I’m wondering if someone can direct me to a study on learning disabilities effecting behaviour at home when bad behavour is not a problem at school. I have a meeting with my childs team at school on Tuesday the 4rth and I’d like some sort of proof that her behaviour when she gets home from school is related to her frustrations in the clasroom.

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