Eyes Like Sapphires

Down Syndrome without health complications (so far)

Tag: More Alike Than Different

Why Are We So Afraid of Down Syndrome?

Why are we so afraid of Down syndrome?

It keeps me up at night. This question. I lie there and try to put my finger on it. I try to remember what it was like before Frankie was “just Frankie.” When “My baby has Down syndrome” was still my first thought when I opened my eyes every morning.

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Photo by Wendy Wang

I look at Frankie’s face, her body, her movement, her features. I scrutinize her.  Can people tell? I think. Are they scared of her? Why would they be? Is it her nose? Cute as a button. Her eyes? So gorgeous. The way she scoots? Adorable and innovative. The way she pulls to stand? So strong. The way she smiles hugely as she manages to wiggle away from her therapist? So smart and so cheeky!  I look at all these features that people associate with Down syndrome and think Nothing scary here.

And yet…

“I can’t do this,” I said when we got her diagnosis a week after she was born.
“You can. We will,” my mother replied.
“I don’t want to do this.”
“You have to do this,” she said.

I hope you don’t think I’m the terrible person I sounded like. I was shocked. I was uneducated. I was scared.

Now I see a pretty, determined little girl making her way from baby towards toddler. Maybe a little slower than others, but fiercely nonetheless. But then I saw limits, dead ends, unteachability. Exclusion. Slowness. I saw only failure. I was ignorant and that made me afraid.

The truth is, I shudder to think what I might’ve done if I had had a prenatal diagnosis and therefore had known Frankie was going to be born with Down syndrome. If I was presented with tons of “she will nevers” and had a grim future laid out for us by some doctor who couldn’t possibly know HER. Some figures estimate that 90% of pre-natal diagnoses end in termination. Yes, I was scared when she was born, but she began educating me the moment I held her. I was lucky I had the most beautiful distraction from my thoughts of utter doom.

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But it’s easy to love a little baby, right? What about teenagers and adults with Down syndrome? Are they scarier? In the beginning, as I was still processing things, I remember saying that I was sure Frankie would be an adorable child, I was more worried about what she would be like as an adult.

We are a society always striving for bigger, faster, stronger, smarter and when you’re faced with a diagnosis where you think none of that is ever going to be achievable, you start to panic. What if my child needs help – possibly a lot of help – to walk, to talk, in school, at work, in life? What am I supposed to do? Will we ever be happy again? What will people think?

I think I was mostly afraid of that stereotype of an adult with Down syndrome, bagging groceries with garbled speech and a big smile. Let’s forget for a minute that that is not necessarily a reality for many, many people with DS. Let’s think instead – what exactly is wrong with that? What is wrong with a person who is doing an honest job and doing it well, doing their best with what they’ve got and doing it with a smile? If that person is happy and if that person is loved, what does it matter what anyone else thinks?

I think a lot about how we got this way. How we came to a place where we’re afraid of people who are not at the top of their class, who are not prom queen, who don’t go on to earn a six figure salary with a higher degree from a prestigious university. People who live ordinary lives and do ordinary jobs. The reality is that very few people actually go on to do those grand things, but there’s something about knowing from the get-go that they’re not even possible that makes it all a game changer.

But I’ll be completely honest – if I had read this when we first got Frankie’s diagnosis, I wouldn’t have been comforted. I was still unable to accept that my child might be less than the best. Less than successful. Or what I had defined as successful at that point. I was very much “that’s fine for you, but that’s not us.” I was scared that Frankie wouldn’t be smart or pretty or regarded in any way. That her life would be lived under the radar basically unrecognized by anyone but her immediate family.

If you’re that mom right now, let me assure that your baby’s future is as bright as anyone else’s. That he or she has options. There are people with Down syndrome blazing trails! Madeline Stuart: Beautiful Model! Tim Harris: Successful Businessman! Jamie Brewer: Talented Actress! Megan Bomgaars: Savvy Entrepreneur! Chris Burke: Respected Advocate! Karen Gaffney: Intelligent speaker, inspiring athlete and all around star! People who are very much ON the radar!

There are protocols to help your family with everything from thyroid function to congenital heart defects to cognitive ability should you choose them. There is education from Early Intervention through to college programs for your child. We are all learning as a community every day and it’s a great time to be a person with Down syndrome. Take it one day at a time, and let your child blossom. I promise they will.

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In the meantime, be comforted by what you already know: Our babies are not scary. They are not broken, or less than, or substandard. They can do nothing with anyone’s pity or prejudice or patronizing or fear. But they can do everything with our encouragement, our support and our love.

World Down Syndrome Day – Decoding Cliches

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.

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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…

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…enough said…

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!