One Thing…Well, Maybe Two

This week’s topic is to write about one thing I wish people would get about Down syndrome. The kind of thing that makes me want to look at people and say “Get it, please!!!”

Well, I have two.

First off, Down syndrome is caused by a random genetic abnormality. Why do I consider this one of my “just get it” moments? Because there are a lot of excuses, judgments, and “couldn’t happen to me” statements out there regarding Down syndrome and quite frankly, it burns my toast to hear people try to explain Rowenna away.

There is nothing – and I mean nothing – anyone does at any time to cause Down syndrome. I’ve heard it all: “I’m too young to worry about that.” “I eat all organic.” “I’m an exercise fanatic.” “I have no family history.”

Stop for a minute and think about how that sounds on the other side: “This is your fault because you waited too long to start your family.” “You’re fat or out of shape.” “You eat poorly.” “You have bad genes or should have ‘known better’ because there is a family history.”

Not only are those things hurtful, they really have nothing to do with conceiving a child with Down syndrome. There is nothing anyone does to cause Down syndrome. 99% of the time, it’s completely random. That other 1%, well, it’s still kind of random because there are other possible genetic combinations if mom or dad is a translocation carrier. But while these things, and others I get to hear, are not true and totally irrelevant, they still hurt – and they are still things that some of us worry about from time to time when we seek answers to the questions of “how?” and “why?”

Even the statistic that moms of advanced maternal age are more likely to have a child with Down syndrome is misleading. It’s misleading in the sense that you don’t have to be of advanced maternal age to conceive a child with Down syndrome. (Yes, the chances do increase with age.) Fully 80% of babies with Down syndrome are born to mothers under the age of 35.

So please: put the judgments and the excuses aside. They’re just another way to add to the “otherness” many of us already feel. We are not special, stronger, or in any way at fault. Down syndrome is a part of our lives, no more, no less.

Second, people with Down syndrome are just that. They’re people. They’re not “inspirations,” they’re not “sweethearts,” they’re not “little angels.” They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.

They are individuals. They learn throughout their lives. They’re not “adult children.” Adults with Down syndrome desire the same things typical adults do:  independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals.

And that’s what I want people to “get.”

My Little Ray of Sunshine

5 responses to this post.

  1. Amen, sister!


  2. Nice! And oh, that little face is killing me!


  3. I love that face! Little Man makes the same one when he’s really excited (which usually happens when food is presented)…


  4. I love this. I need to figure out how to subscribe to wordpress blogs, because every time I read yours, I love it.

    Can someone please tell Ellie she is supposed to be a “sweetheart” and “little angel?” She was last night, but the night before, she was a screaming banshee!

    Rowenna is such a little beauty.


  5. Well said. Thanks!


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