Why I'm not going to the National Down Syndrome Conference

(Note: a truncated version of this message was distributed owing to Blogger behavior on certain iDevices. This is the complete post.)

I've been seeing Facebook posts from excited people talking about the upcoming convention in July. The early bird deadline is today. But I've decided not to go.

(This post would probably be a lot more popular if my reason was owing to disagreeing with the official position of someone who is speaking, or with the vision statement of the NDSC. However, I'm just not much about controversy. I tend to think that both sides are worth listening to in *most* cases. My reasons for writing have to do with my own experience, and my hope here is that my experience will resonate with someone else.)

My file cabinet, inbox, reading list, desktop and a box are full of materials on so many aspects of Down syndrome. How to teach reading, kindergarten readiness, inclusion best practices, oral motor tools, lists of apps, apps, physical considerations, speech and language development. I could probably throw my own convention!

I think the ongoing challenges (opportunities, in the positive thinking parlance) take up a tremendous amount of energy for me. I can see how extroverted moms and dads might really thrive in the convention atmosphere, but I think my brain might just pop if I try to put too much more info in there.

Maybe the biggest challenge (opportunity) for me is to actually use my resources with any consistency. I often say that if Kepler had been our first child, he'd be being raised differently. More lessons, more teams, more play dates, more therapy, more deliberate educational activities at home. But, well, with him being our fifth, and coming along when I was losing energy rather than gaining it, I can occasionally accept my more lackadaisical, laidback parenting and recognize that Kepler is a happy, well-loved, smart kid.

More often than not, though, especially in environments such as a convention, I become aware of how very lackadaisical and laidback I am and always wonder if his speech would be more intelligible if I were doing more; if he might be reading already if I'd followed through on all the reading resources I know of. So events like conventions just seem to drain my energy.

It finally occurred to me recently that it might be a great idea for me to hire a babysitter sometimes. I have had several built-in babysitters, but Kepler adores being the center of someone's attention, which is what he gets from a hired babysitter. What a relief to discover that I don't have to do every. last. thing. myself, that babysitters can even put Kepler to bed! That's a step in the right direction to being able to be a little more free for events such as a convention. (Of COURSE Greg puts him to bed sometimes; he just travels a lot.)

The thing I would enjoy about something like the convention is the possibility of finding a new heart-to-heart friend who understands life with Ds from the inside. Between all the moving we've done, Greg's traveling for work, and homeschooling, many friendships have faded away over time, and have been replaced with e-friends. These days, making new friends IRL seems like a challenge indeed.

But if parenting has taught me anything, it's that I am resourceful and creative and persistent. Simple next step is to invite a mostly online friend to get together! It's not like I have to plan a 200-person catered affair to get to know someone!

I've already got two people in mind.

Tl;dr: Writer is on information-overload, but social-underload.

Read more »