Thursday, October 3, 2013

Individuals with Down syndrome- They Are All_________

Down syndrome awareness month. I don't even know where to start.
In years past I've felt the need to prove something. Argue something. Stand up on a soapbox and proclaim to the world a truth that they were missing.

Now? Down syndrome awareness month is just another month in which I am blessed with a beautiful little girl. She is a lot like other little girls, but just like other little girls she has something that makes her unique. And her something? Is an extra chromosome.

Don't get me wrong- just because I've settled into a comfortable place with Down syndrome doesn't mean that I think that I should stand down from my soapbox and live my truth quietly. No, I still spend a lot of time on that soapbox. But my speeches aren't to convince myself anymore. I am convinced. I believe. I am happy. If I talk about Down syndrome, it is to share my daughter's truth to those who will be interacting with her. Those who have the choice to accept her or snub her.

And to be completely honest- I feel like this blog is a year round Down syndrome awareness campaign. Not by arguing, or being super flashy, or discussing Down syndrome abortion percentages. Simply by living. Living lives that are full, rich, and beautiful. Lives that include an extra chromosome but are enriched by it- not tainted, suffering, or sad. Awesome lives.

The more I learn about Down syndrome and meet families and individuals in similar circumstances, the harder I find it is to make broad statements about Down syndrome.

They are always_______
They will have delays here:_______
They will success in these areas:_______
They will have these health issues:_________
Their lives will turn out exactly like_________

I've learned that our truth with these issues are certainly not everyone's truth. My daughter's health problems are not exactly the same as every other person with Down syndrome. Her personality is quite her own- thank you very much. Her delays are different from peers with Down syndrome. Her strengths are different. Her uniqueness can perhaps placed on a spectrum of Down syndrome-like qualities, but can't be defined by the whole.
The way I see it, this spectrum is a large circle with infinite possibilities of combinations inside. Addison is one of those combinations. Her genetic makeup is within that circle, but her uniqueness stands in a pink square all its own:
And believe me- she's standing on that pink square dancing the hokey pokey in her own special way. Imagine if you will that circle filled with different shapes- all different colors- all different sizes- all different textures. Each shape falls within the broader circle of Down syndrome- but still unique unto itself. (also- imagine this circle is much, much, much bigger.)

I kind of actually get annoyed when people assume things about Addison just because she has Down syndrome. They assume that she will be exactly like that random stranger they briefly met in the grocery store three years ago who had Down syndrome. They assume that her personality will be always happy because that is what the stereotype teaches. They assume that her strengths and weaknesses are defined for her, and that she is pre-programed to turn out a certain way no matter how great of a life we give her.  They assume that her uniqueness is defined solely by the fact that she has Down syndrome and includes nothing of her own.

The more people I meet- read about- learn about- the more I realize just how different each and every individual with Down syndrome is from each other.
You know -like actual people.

So this year I'm struggling a bit with Down syndrome awareness month. Yes, my daughter has Down syndrome. She also has curly hair, blue eyes, and a stomach that begs for tickles. I bet that would describe a lot of different little girls- but not completely define them. We are dealing with some typical toddler frustrations right now- compounded by the fact that her communication skills are so poor. But you know what? I know of some of Addison's peers with Down syndrome that do not have those same communication struggles. Yes, they have toddler frustrations- but highlighted by different weakness than Addison's. I also can list a lot of awesome strengths that Addison has that other toddlers with Down syndrome don't. Strengths and weaknesses- different for everybody.
So I guess if I had to sum up something about ALL individuals with Down syndrome- it would have nothing to do with personality, physical features, health problems, or futures.

No- it would go something like this:

Individuals with Down syndrome....they are all people. They are drawn in a circle of awesome extra chromosomeness, but each with their own definition of life. There might be some overlap here and there with certain features and possible delays, but there is no formula for EXACTLY how this should look or play out. Family features shine through. Beauty is present. Character and a zest for life will be painted- but differently for everyone.

It's hard. It's easy. It's amazing. It's frustrating. It's life.
I am proud to have my daughter drawn into this circle labeled Down syndrome. I am proud to stand beside her and help her to the best of my abilities. I am proud to be a special needs mom. I am proud to love her for exactly who she is. But I am also proud that she is her own person. Down syndrome is a big part of her, but it isn't who she is.

Who she is- what she makes of her life- that's up to her. And I'm proud of that too.

Celebrating Down syndrome awareness month- it's so much more than trying to argue our way out of stereotypes, list similarities, and shout to the roof awesomeness. It's about recognizing that these individuals are worthy- of life, of potential, of respect. It's about setting aside differences and acknowledging the person. It's about kindness and hope and pride and love.

We're really lucky around here. We get a daily reminder of this. But this month dedicated to Down syndrome? I invite you to celebrate with us.

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