Monday, October 19, 2009


When people learn that E has Down Syndrome, invariably there's a comment about how loving children with Down Syndrome are, how easy going they are, how they're closer to God, etc. All things to convey that somehow, having Down Syndrome makes a child more precious and special.

I have a confession about this view.

I think it's crap.

Don't get me wrong. My girls are the sun, moon, and stars to me. Both of them are beyond precious to me, but E's Down Syndrome doesn't make her more so. I don't think she's closer to God than any other child is or adult chooses to be. And I think that placing those expectations or that view on her disrespects and limits her. It doesn't see her.

As a caveat, I'm only 21.5 months into being a parent of a child with DS, so it's possible that this view may change. But at this moment, I only see how restrictive the view is for her and how inaccurate it is already. At 21.5 months, E is smart, willful, stubborn, and persistent. She is also loving, sweet, and darling. She is, like all humans, a complex being.

When M was born, the phrase used was, "I don't know, she's still a mystery to me." We still us it today and it's totally applicable to E, perhaps even moreso because what we know about parenting M is not necessarily useful knowledge for E. They are different from one another as all sibilings are.

I think about E's DS as more of a condition that she lives with rather than it being a way of life. For example, when you think of someone with diabetes, you don't see the diabetes as the defining issue in their life. The person is living with diabetes rather than giving them a label of Diabetic with a big D. See the nuance of it? And how different one can be from the other?

This is why I think that this attitude about people with Down Syndrome is crap. It doesn't provide a full view of the richness and complexity that all people share. I think it also diminishes the role of the parent and sibilings. Parenting children isn't always sunshine and roses and my E isn't more likely to poop kittnes and rainbows than M ever was. So don't be surprised when you tell me how easy it is or how loving DS kids are that my comment is that I'll be happy to call you around 5:00 am when E is making her desire to get up known; or when she's tired of riding in the car seat, or teething, or giggling like mad because M is making her laugh.

When we don't acknowledge this complexity about people with Down Syndrome, then we don't see them. The National Down Syndrome Congress has a campaign called More Alike than Different. Check it out and see for yourself. Consider, what if they were only "allowed" to stay loving and all the other outdated assumptions. I think it's obvious which future I want for my E.

1 comment:

Cate said...

I so totally agree with you.