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She's Famous ... and Changing Lives

Posted Feb 04 2009 12:38am
My baby girl {Payton} ... she made the cover!

Our local Down syndrome group put together this brochure for new parents. I was contacted and asked if Payton's picture could be used on the cover ... how sweet is that?! It makes me so happy that her little face is among the first that will be seen by new parents.

I may be biased ... in fact, I know I'm biased ... but how could you see her little smiling face on the cover of this brochure and not have a teeny tiny sense of relief that maybe, just maybe ... your baby will be okay.

As you open the brochure, it has a special message for new parents. The message essentially lets them know that although their baby has an extra chromosome, that their baby is still just a baby ... he/she sleeps, poops, cries and eats just like any other baby. The message lets them know that individuals with Down syndrome share more characteristics with their families than they do with each other. The message lets them know that individuals with Down syndrome can lead very normal lives.

On the back side of the brochure, there is a listing of contacts for our local Down syndrome group, as well as contacts for local resources ... such as Early Intervention services by county ... and national resources ... such as the National Down Syndrome Society.

So what does any of this really have to do with anything?

Well, I'm glad you asked!

I have been following the blog of a family that recently received news that their unborn baby boy has Down syndrome. Today, Adrienne {the mother} was talking about the lack of information that she received after suspicions arose that her son may have Down syndrome.

This is very common and it needs to stop.

It is called Changing Lives ... a program designed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome. The Changing Lives Program was developed by the National Down Syndrome Society for local groups to present to the professionals in their area.

Ideally, a Changing Lives Program will …

  • Educate professionals on the medical and developmental needs of people with Down syndrome and the best-care practices to address them.
  • Prepare professionals to deliver diagnoses and other sensitive information.
  • Provide information on local and national resources.
  • Supply materials and information for new and expectant parents.
  • Foster on-going relationships between professionals and parents.
But the problem is not enough local groups are embracing Changing Lives and running with it. My local group has this program, but I'm not sure how much has been done yet. {Note to self: email the person that is heading it up and get involved.} This program means so much to me because of exactly what Adrienne ... and the rest of us ... experienced.

After Payton was born, I was handed a brochure that was titled ... "Breastfeeding the Down syndrome child." Hello ... I think it was published in 1942! Not to mention the fact that reading this title seems to infer that THE Down syndrome child is not even a child at all and that his/her life has no value. How about A child with Down syndrome? The information was outdated and that is the purpose of Changing Lives.

So what are you doing to support Changing Lives? If you work in the health care field, have you heard of such a program? What can you do to help?

Let's brainstorm people. We can do this. We can help parents who receive a new diagnosis ... be it prenatally or after birth ... to have the information that they need.
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