Down Syndrome: is there a spectrum?

I often get the question: "How severe is Elizabeth's Down Syndrome?"

It's not easy to answer - for many reasons. First, you either have Downs or you don't. Elizabeth has Downs. Second, in the early months Elizabeth will develop just as any other baby, although we have some physical therapy planned that will ensure she doesn't lose any ground.

We are optimistic about Elizabeth's potential. Already, she works on tummy time multiple times per day, even lifting her head back-and-forth with some ease. The milestone charts show her at-par with peers who don't have Downs.

She is a wiggle worm and has strong legs that don't stop moving. She also follows objects (but not always). She looks toward the person entering the room, too. All of these activities are following the milestones of a non-Downs' baby. This video is a little long but at minute 1.58, it shows how Liz is reaching and grasping for objects. She did it several times before my light-bulb went on to capture it in video.

I also wanted to include this picture of sunlight here in the Desert... During her first week of life, Elizabeth's bilirubin levels were low and she bordered on jaundice. Fortunately she wasn't hospitalized but we had to take her in every day including Thanksgiving to ensure the numbers were going the right direction. I remember my friend Lisa in Denver saying, "just put her by the window in direct sunlight. It will help." I looked around and thought... ummm this is Portland, in November. There's absolutely no sunlight around (sorry Lisa, but you come from the state with 300+ days of sunshine). Now we have plenty of sunshine here in Palm Desert. Here's the girls playing outside in PJs on our lanai as I sip coffee and finish up this post.

Elizabeth is reaching milestones very well from my perspective. She smiles, coos, grasps for things on her playmat, and recognizes mom (dad is next).

I'm not trying to deny the fact that my daughter was born with Down's. I'm trying to prove the fact that it merely requires us to proactively "close the gap" created by the extra chromosome, and we intend to do all we can. For a good explanation of Down syndrome, check out: http://en.wikipedia.org/wiki/Down_syndrome.

I was given advice many weeks ago that my objective in Lizzie's development should be finding ways to close the gap between Lizzie and her non-Downs' peers. While Maddi would take initiative herself to play and wiggle and laugh, with Lizzie it's up to us to get her to play, wiggle, and laugh.

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I may just be taking that advice to seriously as it looks as though I've tuckered out our Lizzie on her playmat.

Predicting long-term development in the early days is difficult to do. And afflicted children fall on a spectrum just as everyone else. There is a wide range of physical, intellectual and emotional development.

We have a lot going for us. Lizzie had no physical abnormalities with her heart, intenstines or brain - this puts us light years ahead for now. We are actively pursuing therapy so that we don't miss a beat. We also told a few select friends about Lizzie's special needs, and those friends have connected us to a support group that has all kinds of resources. It's the Down Sysndrome Network of Oregon. If you want more infomration on Downs itself, go here: http://www.down-syndrome.org/. The most important things we can do are create a loving and stimulating environment. She can be anything she wants. Right now, she just wants to sleep because I think we are over-stimulating her :)