Thursday, June 23, 2011
When your child is born with Down syndrome a whole new world opens up. At first that is a major understatement. All the dozens of baby books you've previously read suddenly seem obsolete. Now you have to pick out new books and learn things you may have never considered.
I will be the first to admit that when Cora was diagnosed with Ds I didn't know a thing about it. I had never even met a person with Ds before. So I knew that I'd need to learn and learn quickly.
If you're interested in learning about Ds it's important to seek out current and reputable information. Believe it or not, a lot of the information that is spread about Ds is still out of date, inaccurate and very degrading. And a lot of that information is sadly spread by doctors who counsel expectant parents. (But that is another topic in and of itself.)
A good resource will advise you to use people first language when speaking of a person with Ds. This means speaking of the person first, rather than the diagnosis. A baby is a "baby with Down syndrome" instead of a "Down's baby." You will also learn that the term to use is Down syndrome (capital D lower case s) and not Down's.
This may seem trivial to some people. You may wonder why language really matters. But when suddenly people are speaking about your own precious baby the language they use becomes much more important. Because you don't just see the "Down's baby" that the nurses refer to. You see your baby. And when people, even with the kindest of intentions, begin to make generalizations about your child or use language that makes your child seem less than worthy, it doesn't seem right. Because it's your baby. Not simply a "Down's baby" that can be lumped into a category consisting solely of generalizations and stereotypes.
Another distinction is between the preferred term "typical" versus the dreaded "normal".
This distinction seems rather important. A thread on the Babycenter Down Syndrome board today posed the question asking why using the word "normal" is considered so un-PC in the Ds community.
And this is a question I've asked myself. Do I really care whether someone says "Down's" or "Down syndrome?" Does it really bother me if someone calls their "typical" child "normal?"
A number of parents weighed in, some stating that the distinction didn't seem important. But others made some good points and gave perspectives that really helped me understand the uneasy feeling I get in my gut when my daughter is evaluated by whether she falls into the category of "normal."
One thoughtful parent stated that in their mind, "normal" is the way something is supposed to be; whereas "typical" is the way something usually is. Someone else took it a step further and wrote that the connotation of the word is important. That by calling a typical child "normal" we are calling our children with 47 chromosomes "abnormal." And that "abnormal" is simply more hurtful.
Another posted that her child is not abnormal, but just has Ds. And I think that is the way I feel. Cora is certainly not abnormal to me. She is the way she is supposed to be.
So do I really care? Yes and no. I can overlook someone not using the proper terminology, especially if the intention is still kind and the person doesn't know the politically correct distinctions that our community has made. Perhaps I will even get more comfortable educating others as time goes by. But overall, it is important to me that Cora is seen as a person first. That she is seen as an individual. And using words that are respectful to her as a person is important to me.
I know that Ds is still unfamiliar to many people. I can hardly blame them, considering where I was only 6 months ago. But one of the gifts I received when I was blessed with Cora is the role of being her advocate. I am certain that will come to mean many things throughout her life. But for now I can start to convey what I am learning to the people in our lives.
And in all of this, I think the most important thing I've learned is what I know simply from knowing Cora. I can't say that I KNOW Down syndrome now. But I know what is important to me about Down syndrome. At least so far. And the rest I will certainly learn as I go. As we go.