What is Down Syndrome, Really? 6


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christmaslightsHappy Holidays to all!    And to those that celebrate: Merry Christmas!

Our holiday season kicked off with Little Bird’s 1st birthday in mid-November. We had a big party with a lot of friends and family, and seem to have been on the go ever since.

A lot of the conversation at these get-togethers centered on Little Bird (who will be renamed Little Turd if he continues to wake at 2am and 5am every morning!). Like every proud parent, Momma Bird and I told how he grows and changes every day:

First (and only) tooth at 8 months. Favorite word is Dada.  Laughs at damn near anything. Except bedtime, and then he sounds like an air-raid siren for 2 hours. Loves playing with his big brother.  Big sister is the only one that can calm him down when he’s wound up tight.    The usual proud parent stuff.

At these gatherings, more than a couple people have asked me a question that I cannot answer.

“What is Down Syndrome, really?”

Let’s take a stab at answering the question here.

 

What is Down Syndrome, really?

The first place I turn for answers is Wikipedia.

After giving the standard “3rd copy of the 21st chromosome” schpiel, the Down Syndrome Wiki launches into several pages of descriptions of the risk factors commonly associated with Down Syndrome, obstacles faced by people with Down Syndrome, and a very nice picture of a ‘boy with Down Syndrome’ assembling a bookcase.

Metaphorically, the Down Syndrome Wiki page is a like those Merck commercials for the medication Oxytrol: they talk a lot about the side effects of taking Oxytrol, but never seem to really talk about what “overactive bladder” really is.




The Question Remains.

It doesn’t get much better after reading the Wiki page on Down Syndrome.

Doctors, when they aren’t apologizing for the “Ghastly Horror of the Down Syndrome Curse“, mostly talk about DS as a cluster of possible, likely, or high-risk secondary conditions.

Parents and teachers typically talk about DS as a cognitive impairment – attaching the Special Needs appellation to a  child.

Drug Companies describe Down Syndrome as a switch that can be turned off.

Every once in a while an article authored by a person diagnosed with DS pops up and sheds a little light on what it is like to live with the stigma society has attached to DS.

The simple fact of the matter is that I don’t think anyone really knows what Down Syndrome is.

I think this Dad really hit the nail on the head earlier this month when he described Down Syndrome as a lamb with a bucket on its foot.




What if Down Syndrome is just a Label?

Trying to understand what Down Syndrome actually is feels very similar to trying to understand different colored human skin.

We can scientifically explain what causes black skin, olive skin, white skin.  But the rest of what it means to be black, Arab, or Caucasian is all social, cultural, and historical.

What if Down Syndrome is – just like skin color – nothing more than a label?

A label for someone that might look a little different.

A label for someone that society, culture and history tells us will act – or be – different.

A label that others can use to define how they interact with another person.

Like the gifts under our Christmas tree, the label has absolutely nothing to do with the present to which it is attached.

The label is not for the present, and it is certainly not for the thing wrapped up in the present.

The label is for you.

When you no longer need it, you just stop using it.

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