Monday, October 6, 2014

Who needs to know?

Children with Down syndrome are often identified at birth as a result of the physical characteristics associated with the syndrome.  Some children exhibit only a few characteristics; others exhibit many.  The most common features associated with Down syndrome include:

* Low muscle tone (babies appear "floppy")

* Flat facial features, with a small nose

* Upward slant to the eyes

* Small skin folds on the inner corner of the eyes

* Small shaped ears

* Single deep crease across the center of the palm

* Hyperflexibility (excessive ability to extend putting both legs far behind your head!)

* Extra space between the big toe and the second toe (great for sandal wearing :)

* Enlarged tongue that tend to stick out

Typically, individuals with Down syndrome are recognizable to a lot people because of these distinct physical characteristics.  On occasion, I have had people ask, "Does she (Sophia) have Down syndrome?"  And I"ll smile and say, "yes."  And then they go on to tell me about someone they know or love who also has Down syndrome.....because honestly, it's a cool group to be in, and as parents or loved ones, we like to connect with other families.

I can't recall any time though where someone has just asked to be nosy.  And I don't usually just mention it to people, unless there is a significant reason to mention it.  Even when I fill out medical forms, sometimes I forget to write down "Down syndrome".

I don't feel the need to associate Sophia with her diagnosis on a daily basis.  Not because I hate Down syndrome or I'm ashamed or embarrassed that Sophia has Down syndrome, but because when I look at my daughter, I don't see a little girl with Down syndrome.....I just see a little girl (who sometimes has horns growing out the top of her pretty blond head!)  But just because I don't see Down syndrome every day, I still know that it exists.  I know that because Sophia has Down syndrome, there are challenges that she faces, challenges that we face as a family, every single day.  Some days those challenges are mild, almost unnoticeable.  Other days......well lets just say her actions can speak VOLUMES some days.

I never want people close to Sophia to look at her and not understand her.  I never want people to assume things about Sophia, or about the population of people who have Down syndrome.  That's why I post things on Facebook.  That's why I write on my blog.  That's why I go to my kids' school and I talk to their friends and classmates, not only about Down syndrome, but about Sophia.....the person Sophia, not the diagnosis that follows her.  By putting Sophia's truth out there, I hope that people will accept my daughter for who she is.....the good, the bad and the beautiful.    

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