Posts from — January 2008

The above video is a really good piece about Karen Gaffney and her family. Karen is a Portland woman with DS who exemplifies all the great strides that have been made in the last 20 years or so regarding DS and the limitations (or lack thereof) that should be/are placed on people with DS.

And while it’s a very positive piece and gives me a lot of hope for Archer’s future, it’s also difficult for me to watch… because it reminds me that while so many things will be possible for my son, there are going to be limitations, there are going to be struggles that we go through that we didn’t expect. Amy and I are still trying to find that balance between acceptance and anger and regret and joy and every other emotion as we get to know our fabulous little man. And we’ve kind of got this bubble thing going on right now– when we’re at home with Archer, he’s just Archer, just our little guy who’s a chatterbox and a krunker and who won’t take a bottle from his dad to save his life. But when we’re reminded in some way about his differences, either through physical therapy or by looking at pictures of other kids with DS or even watching this piece on Karen, it causes some sort of step back, some reevaluation (did he do enough head lifting today? why is his neck so wobbly? let’s try to get him to grasp his toy again!)

And I’m still not to the point where I can really look much past the day to day, not that I should be– thinking ahead to when he’s 2 or 5 or 10 is just way too much information overload and there are so many questions yet to be answered: (yeah, he’s the cutest thing ever now, but how will people react when he’s older? what if he doesn’t speak very well? how smart will he be?) none of which need answering now.

So as I watched the video, I found myself holding my breath waiting for Karen to come onscreen. And when Tiki sat down to talk to her, I was relieved (and then kind of ashamed of my relief) that she was so obviously intelligent, spoke really well, and wasn’t, I guess, what I feel like a mentally disable person would look/sound/be like. Her accomplishments are pretty amazing in general for anyone, never mind her DS.

I take a lot of hope from the fact that, as her parents mention, Karen’s one of the first generation of kids that started with early intervention and inclusion, things that we’re doing with Archer and that I’m sure will help him as he develops. While we don’t know what the future brings (nor does any parent, really), we know that we just want him to be seen for who he is and what he does (again, like every parent), not what his limitations might be or what walls he might run into– or what walls he’ll simply hurdle. And I look forward to him surprising me each day, as he’s done already.