Monday, October 12, 2009

Dyspraxia Awareness Week

This week is Dyspraxia Awareness Week in the USA and UK.

I've written a lot about how dyspraxia has affected our lives; from the struggle to have Jake diagnosed, to realizing how to manage sensory sensitivities, and tips and tricks we learned along the way.

Somehow, as Jake has gotten bigger and things have become more manageable, the posts have become fewer and far between because it's just a smallish part of our life now, not the overwhelming mountain that we felt we were facing in the beginning.

Last week I received an e-mail from a reader at the beginning, and reading her words put me right back at the beginning of our journey all over again. Back when Jake was little and I was a ball of anxiety, trying to figure out what on Earth was going on and what I had done to cause it. We made a lot of mistakes in those days; but as time went on, I have learned that there is at least one thing we did well.

We taught Jake about kids with disabilities, right from day one.

It was easy, for me. I already worked with disabled children, and so it was natural for Jake to be around kids with autism, Down's Syndrome, in wheelchairs, or who used sign language on a regular basis. He learned from the beginning that they are kids just like him, who have feelings and want to make friends. He learned that they could do many, if not all, the things he did and to treat them with kindness and respect.

Over the years as we learned that he had sensory sensitivities and dyspraxia, we began to teach him about his own disability. Why he had trouble with math. Why tying his shoes was so frustrating, and why lights and sounds were overwhelming. It has a name. It's not an excuse, or a cop out to say "I have dyspraxia, this is hard", but rather an acceptance that "yes, I'm trying, but there is a reason why I'm having trouble with it that is NOT MY FAULT."

Why did we do this?

School is often a case of survival of the fittest, where kids are like the birds who peck the weakest in the nest to death. They are quick to point out the child who can't do something, the one who is failing, the child who can't sit at story time or forgets to raise their hand. Kids will zero in on the child who has trouble managing their behavior and call them "bad", especially if they can see that their teacher is frustrated.

I hate to say this, but their parents often think that way too-because somehow if your child is the one that sits quietly, colors in the lines and does what they are told, you get the parent version of a gold star. It's a reflection of your most wonderful parenting ability, isn't it?

It's easy to teach our kids to be compassionate to the child in the wheelchair. The kids with the invisible disabilities are often judged as lazy, bad, or annoying instead. If you look closely though, you'll find that these kids need compassion just as much as the child with the obvious disability because these ones are acutely aware that they are different.

If their peers understand them a bit better, they would understand that sometimes, "it's the dyspraxia talking", as Jake says. Instead of making fun of him when he wipes out in PE playing dodge ball, they can genuinely laugh WITH him, because Jake has learned to laugh at himself.

He knows dyspraxia will always be there, but damn it, he won't let it WIN. Teaching him gave him the self confidence to teach other people, and to stand up and say, "Ya, this is part of me-but it's not ALL of me."

The other day Jake came home from school and shared that a friend of his has a specific diagnosis. We discussed how difficult it is to live with that disability, and how it must be very hard for his friend. After a bit of silence, Jake looked at me thoughtfully,

"I guess I just have to remember when he's being annoying that sometimes, it's the _____ talking. Just like me."

Exactly like you.

What is dyspraxia?
What are the symptoms?

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