Tuesday, January 13, 2009


Kids with Down syndrome have to work hard for everything. With low muscle tone, every physical action - from sitting to walking to climbing onto the toilet - is harder work. And simple responses to questions (let alone learning and complex decision making) are a lot more challenging with what William C. Mobley, M.D., Ph.D., Professor and Chair of the Department of Neurology and Neurological Sciences at Stanford University School of Medicine calls brain damage.

(That guy is doing some fascinating - and controversial - research, by the way. I've mentioned it before and I'm sure that I'll post on it again some time.)

We're not the sort of parents who over-schedule our children. We don't believe that they have to be in the "best" preschools now to get into the "best" colleges later. We don't start our kids in sports as toddlers in the hope that they'll make the best club teams as tweens. Still. Ellie has so much potential. She's insightful enough to realize it and be hurt when she's being treated differently. She's smart enough and sensitive enough to be frustrated when she doesn't quite manage to accomplish what she's set out to do, whether it's communicating something verbally or physically keeping up with her classmates.

So she works hard. We all work hard. On the part of Ellie's parents (and teachers and therapists) the hard part is remembering to make all the activities fun. Games. She learns better when she's enjoying herself than when she's being "tested." We're not big on drills. And whether she supplies the answer to the questions or we do, she's still hearing them and learning the material. She's a smart, hard-working kid. And we do an awful lot of laughing and praising.


Kathy G said...

My heart aches for all children (and adults) with special needs that realize they're not being treated the way they should be.

It sounds like you're doing a great job helping Ellie live up to her potential.

Sarahlynn said...

What I told Paul when I presented this schedule for "discussion" was that if we do all of these things, if we keep up with this, I will feel like we're doing enough. Not that we're doing a great job, or excelling in any way. Just that we're doing enough so that I don't lose sleep at night from feeling guilty.