The Soft Bigotry of Low Expectations

Tertia recently celebrated her 12th birthday.  She remembers birthdays.  She can tell you the birthdays of her 1st grade teacher, all her family members, and about half of her classmates from last year.  She will give you a hug on your birthday and make you feel like the most special person in the world, and her general outlook on life is definitely the dog's diary rather than the cat's diary.  It's a privilege to bake her birthday cake every year and present it to her for the standard pre-candle-blowout picture.

I don't usually blog about anything with "awareness" in the title, but Down syndrome awareness is a part of my life even when it isn't the official month for it.  There aren't any clearcut or easy answers for some of the questions that come up these days; the challenges of middle school are bigger than the ones in the preschool and gradeschool years, and there seem to be fewer resources, but she needs an advocate now even more than before.  I'm really pleased with her school and her teachers; but it does seem that by being pushy parents when she was younger, we've made her life a little harder now.  She reads too well, and even her math skills are too good, to just let her be babysat in the self-contained special ed classroom; but she will experience occasional frustration and anxiety in the general education and Learning Support classrooms.  Now, I know the "Life Skills" classroom is a wonderful, nurturing environment, staffed by experienced people who care deeply about kids with special needs.  And more and more, parents are hearing how these kids are going to be included in the life of the school.  But too often, what the school officials mean by inclusion is not really all that inclusive.  It's easy to include kids in lunch, art, and P.E. It's a bit harder to do it in academic subjects.  I was a bit shocked when we found out that Tertia is one of only 2 kids that go out of the Life Skills classroom to other classes.  Is she really "smarter" than the other kids, or is this just because we pushed more?  And (this is always at the back of our minds) how much can we get away with pushing before it backfires and hurts her, or gets us branded as uncooperative parents who won't face reality and accept the course of least resistance?

My hope for Tertia in these middle school years is that she can grow and develop without losing that special spark that has made her childhood such a delight beyond anything I ever expected that first day in the hospital, when it seemed we were dumped into the cold unfriendly territory of special-needs parenting.  And a big part of her spark, I'm convinced, comes from the fact that she has been included all along as much as possible in her family, school, and community.  And that inclusion has never been easy... it's hard fought for.  We have found, though, that when you set out with inclusion as a priority, when there is no question of non-inclusion, it becomes much easier.  Actually, it becomes a way of life.  And that's good, not only for our daughter, but for all the people around her.