Heresy

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.

The War on Ignorance

In February, our Physical Therapist (PT) put E in a walker. We'd been working on progressing through various gross motor milestones and it was time to begin working upright.

While filming her on my camera phone, I thought nothing of the fact that she was in a walker or uses an assitance device. Where before having E, I would have looked at a child and thought something pitying ("oh, how sad") and some gratitude that it wasn't my child. What an ass I now realize I was (okay, still am sometimes), because I didn't feel pity for my child for using a walker. I cheered and laughed and was so excited to see her have the use of equipment that would help her. I was grateful, so grateful for people who think about how to provide therapy and therapeutic equipment for kids (and adults).

I felt rather proud of myself that I can realize the juxtaposition of these ideas. That I realize that people might view the video above and feel sadness or pity towards my child; and I'm a little smug knowing that they are the ones to be pitied because of their blinders (you know, the ones I used to wear, or so I thought).

Now, I should digress and let you know that we have a standing PT appointment on Tuesday. Generally, we see familiar faces of other kids who are seeing other therapists (speech, PT, occupational). There's a kind of protocol of smile and acknowledge, but no one really talks about the various conditions/circumstances that bring kids to the center.

There's a baby girl (probably 9 months old) who has been coming in with her dad. I'm not sure what her circumstances are, but she seems to have some physical limitations and I have yet to really see her alert. However, her dad (and sometimes her mom) are there every week.

At Tuesday's meeting, we worked on walking in the walker (now with no seat), climbing stairs (E loves!) and the treadmill. The room we were in, though, had other various equipment, but mostly the kind of wheelchairs that provide full body support. We carried on, trying to give them privacy while also working on our issues (the room is the one with the stairs equipment). As it transpired, though, they were putting the little girl in one of the wheel chairs.

Despite what I know, I still had that moment of sadness tinged with pity. I would like to know more about her and her family (the questions I would ask, though, may not be the obvious ones now....that's for another post), but the whole privacy thing (and HIPAA) prevent it; not to mention that we're there to work on E and not socialize. Anyway....the point is, I had that moment of pity coupled with gratitude that their circumstances seemed, to me at least, to be harder than mine. I was grateful that our little E was not being fitted for a wheelchair.

Then, as we were moving to the room where the treadmill was, I saw the dad taking pictures of his little girl in her wheelchair; and I knew that his only thought was that this piece of equipment was going to make his daughter's life better in some way.