Thursday, March 20, 2014

Your Perception Of Down Syndrome

What do the words "Down syndrome" mean to you? No really. Stop and think about it. What do they really mean?

I realize if you are reading this- if you are a follower of ours at all- either you

1. have a child with Down syndrome yourself and are part of our Down syndrome "network"
2. are curious about a parenting reality different than your own
3. love following the unique journey of a certain little Addison
4. have a compassionate heart that truly wants to learn more about life with disability to further your knowledge base and therefore your ability to understand with kindness.
5. just received a new Down syndrome diagnosis and are silently doing your "research"

Perhaps I'm assuming too much with that list, but for the sake of argument let's just go with it.

To each of you, "Down syndrome" is going to mean something entirely different.
It's like we're all standing around a tree. Some of you are way across the yard. Some of you are so close to the tree you're practically under it. Some of you are a few steps away- circling around the tree. We each see a different side of the tree. We get different spots of light through the spaces in the leaves. The leaves are angled differently to all of us.

The same tree. Different perspectives- or perceptions if you will.

To a random stranger in the store- perhaps "Down syndrome" means an individual with a slightly different look- still shopping with his/her parents long after other children have moved away from home.

To a facebook friend who clicks "like" on a promotional Down syndrome poster or video- perhaps "Down syndrome" means a feel-good, happy thing that is always a screen away.

To a new parent just receiving the diagnosis, maybe the words "Down syndrome" strike fear, sadness, and uncertainty in your heart.
To those who love following Addison's journey, the words "Down syndrome" to you might equal Addison.

To a parent who has only typically developing kids and no real contact with someone with Down syndrome, perhaps "Down syndrome" means only "That awful thing that we luckily escaped- GOD IS GOOD!"

The truth is, we all have different perceptions when it comes to Down syndrome. How we were raised, who we know, books we've read, philosophies we follow, beliefs we cling to- how we were taught to think about disability...all of these things combine to create our unique perspective about Down syndrome.

I know in this world there will never be ONE perception because we all live such different lives and it isn't fair to expect us all to think the same way.
And honestly I don't think that different perceptions of Down syndrome are wrong, but I do think that it's important that we shape our individual perception around certain facts. Well, facts according to the perception of someone living with the reality of Down syndrome every day.

(for example: We all see a tree. But let's establish: the tree has roots in the ground. The tree has leaves. The tree is tall. Etc.)

Fact #1 Down syndrome is not a bad thing
Fact #2 Down syndrome is not just an excuse for the newest trendy feel-good campaign
Fact #3 The presence of Down syndrome in a family is also the result of God being good
Fact #4 There is no ONE model of Down syndrome.
Fact #5 There is not just ONE possible future for an individual with Down syndrome
Fact#6 Down syndrome doesn't prescribe automatic happiness, but life with Down syndrome can be full of as much happiness and joy as you choose to let it
Fact#7 Individuals with Down syndrome have HUGE potential and ability to learn life skills, academic skills, and social skills.
Fact#8 There isn't a right way and wrong way when it comes to accepting a new Down syndrome diagnosis. You approach it with your previous perceptions- therefore our approaches will all be different.
I have lived a wide range of perceptions when it comes to Down syndrome.

There was the young childhood version where I was oblivious to such a thing existing. There were the awkward teen years where I avoided anyone who would make me feel even more awkward. There were the college years were I studied to become a teacher but sat through the special ed classes with a raised eyebrow. There were the grad school years were nothing mattered to me but my goals. There were the early teacher years where I had a child with autism in my class that started to stretch the way I thought about those different than myself. There were the days of Addison's diagnosis were I was suddenly aware of Down syndrome and loathed that it was now part of my life. There was the first year of motherhood when Addison started to teach me about life in a way I had never been taught before. There were the next three years in the school of Addison....and then there is now.

The loathing is completely gone- Down syndrome is intrinsically a part of my motherhood story, and I am in awe of how perfectly and beautifully this story was written for me.
Before, I was viewing the tree from far away. Now I am staring at a beautiful leaf from this tree through a microscope, marveling at the wide variety of colors, intricate design, and artistic beauty that wasn't available previously to my naked eye- way across the way. It's easy to have a tainted perception when you aren't looking closely enough. But with this blog- with us sharing Addison with you- this is our invitation for you to join us at our microscope. Getting the scoop on the close up picture. Of course- staring at this particular leaf full of vibrancy and unique design wouldn't be like EVERY leaf that you could study from this particular tree. Each leaf will still hold its own uniqueness even though they can all fall under the label "leaf". But here is our leaf. Come see the beauty that is here.

As I stand contentedly in the now and look to tomorrow's celebration of World Down Syndrome Day (3/21 standing for 3 copies of the chromosome 21), I find myself with the impossible wish that everyone could share this close-in-view perception of Down syndrome. Not just for a day, but for every time they see someone different and have a choice of how to respond. When they are in the crossroads of choosing "cool" or "kind" and have to pick only one. When they are facing that genetics counselor who just advised terminating the pregnancy to eliminate "suffering". When they have the chance to help someone else even when it's inconvenient to their fast-paced schedule. When they are bragging about their child's brilliant achievements as if it's the only thing that matters in life. When they talk about schooling their child in a classroom without a child with a disability so that THEIR child won't be held back by THEM. When they choose who to sit next to in the lunchroom. When they aren't sure exactly how to respond and struggle with respecting someone "different". When they get dragged down by frustrating, difficult circumstances, and need to find strength to keep going. When they think "hard" means to "stop trying".

Down syndrome means a lot to me. Down syndrome is a big part of who my daughter is.

Down syndrome may mean absolutely nothing to you. But in honor of World Down Syndrome Day could you pretend? Could you pretend just for a moment that Addison is your daughter? How would it change the way you perceive Down syndrome? How would it change the way you see other individuals with Down syndrome- the way you treat them? If you had watched a sweet little girl fight so hard for life...skills...and the ability to tell us about it- would you have more respect for someone out and about who isn't accomplished and smooth- but is trying their absolute best and succeeding spectacularly on a level all their own?

Welcome to our microscope.

Happy World Down Syndrome Day, baby girl. xoxo

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