If you’ve recently become immersed in the world of Down syndrome, you will probably have come across what seems like a few cliches. There are phrases and sayings that parents and organizations that advocate for people with Down syndrome say a lot, but I think to the uninitiated it is sometimes difficult to put real meaning to them. I might not even be qualified to translate them for you, but in the past year we have learned a lot about what they mean – we have the best teacher! So what follows is my attempt at decoding the “cliches” for you so you can understand what they really mean to those of us who love someone with DS.
People with Down Syndrome are NOT always happy!
This one bothers Frankie’s grandma to no end, so we’ll start here. We get it A LOT – “She’s so sweet” or “She’s always so happy.” Let me tell you something, Frankie is NOT always happy. This girl is FIERCE! She knows exactly what she wants and if you make her do something she doesn’t want to, she will unleash the beast! She’s only 1, but we’ve seen her happy, angry, upset, grumpy, silly, coy, shy, crazy and manipulative all in equal measure. But I guess what is underlying here is whether or not people with DS “know enough” to have any kind of reaction other than happy. That this extra chromosome somehow erases the whole spectrum of emotions that make us human. People with Down syndrome are just as complex as everyone else and if you have trouble believing that, please take a look at Karen Gaffney’s TED Talk. She is an amazing speaker and this particular speech is full of passion, humor and emotion, not to mention intelligence.
More Alike Than Different
People with Down syndrome are more like their typically developing peers than they are different. Frankie and I are part of a very large mommy and baby group and there is very little that sets her apart from the other one year olds in the group. When we moms natter on about sleep issues and have questions about starting solids, dirty diapers and the finer points of Super Simple Songs (Frankie’s favorite!), I don’t ever have to bow out of the conversation. We may face some challenges that others may not, but, you know what? They will face some that we don’t have to as well. That’s not Down syndrome, that’s life! And as Francesca grows, she will have hopes and dreams and fears the same as you and me. She will have friends and struggles with school work, a yearning to be independent, she will find love. She will live a life. Her life. And it holds as much value as anyone else’s does. And she’s lucky to start it off with these guys, who will hopefully not blink an eye when they meet a person with DS in the future, because they already know they’re more alike than different.
On a related note, we often say that though people with Down syndrome may share some common physical features, they look more like their families than one another. Here’s our proof…
People with Down Syndrome are NOT a diagnosis!
Francesca is first and foremost Francesca. The majority of her traits, her personality, her habits, etc are NOT attributable to Down syndrome. An example: She doesn’t crawl, she scoots around on her bottom. It’s very cute. Lots of kids do it, typical or otherwise, and yet it surprises people. They will say Oh, look at her! And then they may continue to stare or talk about it for so long that I sometimes feel the need to explain that she has low muscle tone that makes crawling on all fours difficult. But recently it occurred to me – she doesn’t scoot because she has Down syndrome, she scoots because that’s how she figured out how to best use her body to get around. DS doesn’t define the way she moves, or the way she thinks or the way she acts. She’s just doing the best she can with what she’s got. As we all are.
But, most importantly, she is loved and loved and loved. By many.
Not because of her diagnosis, or even in spite of it.
But just because she’s our Frankie Cat.
Happy World Down Syndrome Day!