Friday, 19 October 2012

Early Intervention

Children with Down syndrome are developmentally delayed. This is a literal term which simply means that it takes longer for most children with DS to reach their milestones like crawling, walking, talking, potty training etc. They all get there.

Just in their own sweet time.

And when they reach their milestones does not determine how well they do in the future. Much of the developmental delay is from their low muscle tone - which makes it harder for them to learn new skills and to get their body to move in typical ways. Muscle tone is not correlated with intelligence.

With typical kids walking just happens. With kids with DS, they have to build up enough core strength and coordination to put all of the steps it takes together to walk. So it takes longer. Phoenix walked at 22 months which is smack in the middle of the normal range for kids with DS.

Because of their developmental delay, it is recommended that all children with DS qualify for Early Intervention (EI). We qualified immediately and had our first visit with the social worker and nurse from our local DS clinic a few days after Phoenix was released from the hospital. They were...wonderful. It was a really positive meeting which was much needed after our experience with the Geneticists. And they brought for us a beautiful hand made quilt that is donated to the clinic to give to families like ours.

For anyone who isn't aware, the purpose of EI is to have our kids learn skills properly, it doesn't help them do things faster. And it isn't a magic panacea that will take away all the challenges that Phoenix will face in her life. It won't make her less delayed. It won't help her catch up with her peers. But it will make sure that she has the tools and skills needed to reach her next milestone, when she is ready to get there.

One of the therapies we did with Phoenix during her first year was water therapy. Water therapy helps the kids build core strength by having to move against the force of the water - which is hundreds of times more force than moving their body through air. Here is Phoe and her Dad having fun at our therapy pool:

Low muscle tone is the culprit for many of Phoenix's challenges. Low tone in the mouth makes eating and speaking more difficult. Low tone in the belly causes reflux. Low tone in the hands and arms make it more difficult for her to use utensils.

Phoenix is able to do all of these things, she just moves forward through the progression of skills at a slower pace. Which is OK. Because I know she is working really hard to get there. Working to the best of her potential, if you will.

Working to the best of her potential. How many people can claim to be doing that?

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