Okay...Why the title?
This is an educational post...for Us and Them!
Elise is our 7 year old girl. She has Down Syndrome. Elise is the inspiration for this blog. She has turned our life inside out. She has grown us. She has strengthened us. She has shown us God on a grander and more mind-blowing level than we could ever have seen without her!
We didn't know Elise was going to have Down Syndrome. It was a big FAT take-your-breath-away surprise. So when she was born, to get the confirmation diagnosis, we had to wait on the bloodwork. During those two weeks (yes, it took that long in 2002), we would look at our tiny girl, and say no way...she does not have anything wrong with her...because we couldn't wrap our minds around it. Yes, we knew that she had tilting kitty cat eyes, and so she was little...but when she was first born, she didn't present with all of the blatant physical signs of Downs.
When we finally got the bloodwork back with the indisputable diagnosis, we would fall back into saying that she was "only just a little bit Downsy"...like she was a little blonde, or a little silly, or a little short...or whatever. The older she's gotten, the more traditional features are observable. But we've sort of kept this silly joke, because this joke keeps the Down Syndrome in perspective. It is not Elise. She is SO MUCH more than her disability...she is a delightful, clever, firecracker of a girl...who happens to have Down Syndrome. She is superlatively more than a chromosomal diagnosis. (Hence the URL SuperDownsy)
However, the educational part of this post is this. When speaking of a child who has a diagnosis, no matter the diagnosis, it should not be the defining characteristic of that child. The girl is not the "little downs girl" nor should there be the "autistic boy". They should be the "girl WITH Downs" and the "boy WITH Autism". It should be like if you were describing the girl with blonde hair, the boy with brown eyes. In using a disability as the only description of a person, it is like using race to define a person. The stereotypes come hand-in-hand with using a term to be all-complete. It is not fair. No one wants to be equated to be no more than a fraction of their life. This is the same thing.
The iron-clad reactions to a diagnosis is what we try to protect our children from. The reason that parents react SO strongly to that phrasing is they want their child to define themselves. As is the right of every child.
I will use it as the primary description if she has gotten lost, because it figures big into her ability to make safe choices. But if I am describing my kids...it is something I may or may not tack on...because it is not how I think of her. She is my pocket baby. She is my vibrant and joyful child. She is expressive and has the most gorgeous skin and eyes. She is Elise.