Friday, September 3, 2010

Downsy? (Us and Them education)

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" 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 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.


  1. This is a great description. When my brother and SIL had their son, Jack, in 2000, they had a similar experience that they were blown away in the delivery room and then had to wait for the diagnosis.

  2. All I can say is WOW! What a great intro to our lives. My son Andy is also seven, and we also had a similar birth experience with the exception that he was in the NICU for three days because "he wasn't really sick, but he wasn't really well." They told us upon releasing us that they wanted to test him for DS. Our world went sideways. I know there are parents out there who embrace and celebrate DS, but that was not what happened to me. I was shattered. How could this happen to us? What would be his future? What would be our future as a family? I immediately thought that we would never have more children as we had planned. We too hung onto the hope that the test would come back negative. Or maybe Mosaic -- that would make it just "a little DS." Obviously the result was irrefutably Trisomy 21.

    I remember crying in my bed one night thinking, "Will the pain ever go away?" I hope you don't think I'm a monster. It was just such a shock and fear of the unknown. I would take him out and wonder if he "looked" like a kid with DS. Like you, his features were so mild, but they have become more noticeable as he's aged --- except to us. He just looks like Andy to us.

    To any new, shell-shocked parents out there, the pain does go away. I no longer see DS when I see Andy. I just see Andy -- a delightful, funny, spirited boy that I love. I still don't know what the future holds, but really I don't know that about any of my children. (PS -- we did have that planned third child. She and Andy are bopping all over the upstairs as I write.) We also heard horror stories about the school system and county services, but we've had nothing be great and caring service providers for the past seven years.

    When we first got the diagnosis, a friend sent the well-circulated poem to us about going to Holland rather than Italy. It brought me no comfort at the time, but now it really is true. It's just a different path we trod. It may have more twists, turns and holes, but it is still full of laughter, joy and love.

    So wherever you are on the journey .... take heart. Whatever stage you are in that may be difficult will pass. It may take longer than your friends' kids, but you'll get there. The sweet times will also last longer than your friends' kids.

    You are not alone. I wish I had reached out more during those early days, so I hope this site will encourage you and connect you with other families that are JUST LIKE YOU -- and do UNDERSTAND. :o)