Sunday, May 27, 2012

Changing Minds

You may, or may not, have noticed that I don't do a whole lot of writing about Down syndrome. There are reasons for that, some that are deliberate, and others that are not, but before I get into those reasons it may help if I back up. We did not find out about Abby's diagnosis of Down syndrome until after she was born, and at that point we were more concerned with her survival, we would deal with anything else later.

Later came, and we did struggle with her diagnosis, but it wasn't long before our mindsets changed from "Why us?" to "We can do this." In very "us" fashion we did research. We read books, we consulted with "experts", and we even talked to a few parents who had been where we were. Despite all of this, I really didn't have a clear idea of what having a child with Down syndrome looked like, mainly because I didn't know any children with Down syndrome. I remember one parent telling me how blessed we were, and yes, I felt that because every child is a blessing, but the future was so very uncertain and I couldn't appreciate her encouragement. Soon though, life took over and as time went on I saw less and less of the Down syndrome, and more and more of Abby.

As Abby grew my focus shifted. Sure we had her in therapy, had IEP's, went to plenty of doctor's appointments, and knew that she was "delayed", but I realized that Abby had such a powerful personality that all of the other "stuff" came second - she was first a child. I heard a person once describe her as a Down's kid. It took all I could to not pounce all over that. Do people refer to other children with challenges by their "label"? I've never heard someone say, "Yes, there's Jimmy, he's a dyslexic kid," or "Their daughter's name is Sally, she's a cancer kid."This is when it really became clear to me that Abby would not be defined by her challenges. She is a child first - a child who happens to have Down syndrome - that's it. This is the chief reason I don't talk about her Down syndrome much. It isn't because I'm in denial, or that I don't accept that part of her. The simple truth is that I don't think about it much. It isn't something that we talk about daily, or that we focus on. We do what we need to do to make Abby successful, just as any parent will do what they need to do to make their child successful.

There are a several reasons why I started this blog in the first place. The first is simply because so many people would comment about how much they enjoyed the Abby stories and the Abby pictures I would post on Facebook. She's hilarious, why wouldn't they love them? I found myself laughing most of the time at the stuff she would come up with, and I just wanted to share my funny kid. I'm proud of her, and am blessed that people seem to like it when I brag about her. The second reason has a more serious element. I remember back after we first had Abby that I didn't know what it was like to have a child with Down syndrome. Because I didn't have a face to put with Down syndrome it was frightening. My hope, when I share stories and pictures of Abby, is that minds would be changed - that people would begin to realize that those who seem different, or who have challenges, are wonderful people first.

Over the years I've had a few friends contact me when people they know have a child with Down syndrome. I have been so blessed to meet some wonderful people that way. I will gladly answer any questions they might have about Abby and our experiences with her, but the first thing I usually do is "friend" them on Facebook, because that gives them the opportunity to "meet" Abby for themselves. I've always felt that the best advocate for people with Down syndrome is Abby herself, doing what she does best - being her. So, that's what I let her do, and you know what? I believe that's what's happening. She is changing minds - I couldn't ask for more than that.

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