Tuesday, October 8, 2013

Down Syndrome Awareness Month - Action

This is Down Syndrome Awareness month. I will have more to say about awareness as the month goes on, as I'm thinking hard about how to defend the utility of "awareness." The real problem is that it is, by grammatical nature, passive. To be aware. A lot of parents, like me, are skeptical about the power of "awareness" to change anything, and yet we post our stories and try to make you "aware."

Anyway, more to come on this.

Here's a post from my friend Christine, mother of Paul. Paul has Down Syndrome and I am posting this with Christine's permission. What's important here is that she suggests action, not just passive awareness.

"A friend and fellow parent posted today about the social aspects of having a child with Down syndrome  I would iterate her feelings as we are starting to experience it ourselves. 

Paul has typically been a popular guy at school. However, in 2nd grade, kids are really starting to notice the differences between themselves and him. They are getting a lot bigger; he's still short. Their speech is really clear; his is not bad, but certainly not as clear. They play games where they decide the rules; Paul doesn't understand them or follow them if he knows them.

I've had other parents ask how they can support their children's relationships with my child. I would say the biggest thing you can do is to actively encourage your child to engage with mine. I've noticed that parents of this age child usually just get to stand back and let the kids figure it out. However, kids, while not intending to be mean, tend to ignore Paul because they aren't interested in someone who does things differently. Encourage your children. Paul notices when he's left out or ignored. And it's starting to hurt him. I don't want his sparkling personality to wither on the vine because no one makes an effort to play with him now. He will need those people skills more than most to survive in the adult world.

I'm hopeful that there will come a time when it will be easier for kids to tap into their compassion and be kind and inclusive of Paul as they grow up. But these are rough years--kids are too young to know to make that extra effort and too old to ignore the differences.

This was a lot longer than I planned, but I hope these words are useful."

I think they are very useful and I thank Christine for them. I have to tell you that I become tired trying to force a social world for Nico. For one, he often seems not to want it (self-isolation, sitting apart, see this post for an example and this post for a remedy in the form a wonderful neighbor girl who I call H.) Second, parents unconsciously exclude too, not inviting Nico to birthday parties because he's hard to handle, or he seems not to want it, or something. I don't blame them.

But if you want to help, work against the grain, and push to include.

You may have to push hard.