The Ups and Downs of Down Syndrome

The other day, as the kids were playing with the trains in our not-so-local bookstore, I happened to browse the Parenting section. I don’t go there often but it was that or board books if I was to keep a proper eye on the kids. I am always naturally curious to see if they have any books on Down Syndrome as I feel its the only thing in my life that seems to have a articulated label but to my surprise (okay, I wasn’t really surprised at all) there were NO books on Down Syndrome.

There was a whole shelf on Autism and Aspergers, books on ADHD, and some general books on parenting a child with special needs. It’s not like Down Syndrome is all that uncommon, especially in Canada and while it is not federally discriminated against lets face it: it’s “cool” to have autism but not to have Down Syndrome. Now, I don’t really care, but I thought it was worth bringing up. Ask any DS clinician and they will tell you Autism gets the funding whilst DS is old news. And I guess that it is, or is it that us as parents of children with DS just don’t need the hype? I suppose one could say it is because Autism is relatively new, whereas DS has been around a while and everything can be summed up in one little chromosome, (which I hope you have figured out from reading my blog: it can’t). Because every child is unique and has their own personality, even those with DS. While they share common traits like the fact that they all have some version of an extra 21st chromosome or that they all have eyes, they are as different as the grains of sand on a beach.

I am going to let you in on a little secret: kids with Down Syndrome aren’t always happy and they probably catch on to more than you give them credit for. Ella isn’t stubborn because she has Down Syndrome. She is stubborn because her mommy is stubborn.
Ella is only two but her personality shines through. She is an observer and likes to watch the world go by but if you try to feed her she’ll let you know that she is big enough to feed herself and if you leave her by herself for 30 seconds she’ll pull out every piece of clothing she owns from her wardrobe. She can make anyone feel like they are worth a million bucks with one small embrace, but only if you are a grandparent type figure or a female older than she is. She doesn’t like babies or little boys (except of course, her brother). She doesn’t like strawberries, carrots or cheddar cheese, but loves indian food and more expensive cheeses like feta or asiago. She loves to read to herself, sing and dance and really wants an ipad for Christmas.

**This post is not at all what I expected it to be and I don’t know how to end it, but I just thought it was worth bringing up so…. that’s all I have to say about that.