Tuesday, October 22, 2013

As it turns out....

....I haven't blogged or facebooked much for Down syndrome Awareness Month.

Not because I'm too busy.
Not because I didn't take any pictures to go with my post (although that is sometimes my reason for not blogging....).
Not because I can't think of what to say or how to phrase it.
Not because I'm so full of emotion I just can't possibly let it all out.

But because I just don't think about Down syndrome all that much.  I think about Carter.

Here's what I know - Carter loves school.  He has friends at school - and he talks about them at home.  He says things like "Henry bus".  "Jordan music".  "Caleb ball".  He knows his teacher and aides and therapists and loves each and every one of them.

Carter loves church, too.  He knows that at church, we see Uncle Ben (even though we live with him now, and Carter sees him every day, he still talks about Uncle Ben at church) and we see Rachel and we see Buzz (the sweet lady who cuts his hair).  He knows that we see his friend, Elijah, at church too - because he's not in his class anymore.  In fact, when we talk about friends at school, Carter is quick to tell us "Elijah church" - not school.

For at home, Carter loves doing anything - as long as it's outside.  We run, we walk, we ride in the stroller or wagon, we prance around the driveway, we eat apples in the grass, we pull a cart or push a stroller up and down the sidewalk, we roll a truck down the driveway - it really doesn't matter what we do, as long as we do it outside (everyone say a prayer for mama as winter is quickly approaching in Wisconsin...).  Carter has gained much independence this summer - just the other day Jake and I were commenting on how far away from us he can get while outside, without us having to run after him.  He pulls his little cart on the sidewalk as far as he can until we yell "Turn around!" - and he can usually be trusted to turn when asked.

And sometimes he doesn't, so we run.  Fast.


Carter also loves the ipad - a little too much.  Once we're in our new house, I'm going to work on having him 'work' for his ipad time - and then only using it sparingly.  But for now, he loves it and can unplug it from the charger, carry it to the couch or bed and lay down, open it up, find his apps, and go to town.

Carter has some un-favorite things, too.  Like table time at school, vegetables, swinging, being told to do something he doesn't want to do (Yours, too? Glad it's not just mine...), riding in the cart in stores (since he's such a big boy now...), and early bedtimes.

Pretty much, Carter is a normal kid.  A normal kid with Down syndrome.

When I see the cute stories about homecoming kings and queens who happen to have Down syndrome, or videos about adults with Down syndrome who are doing things like owning restaurants or competing in sports, it makes my heart happy and sad all at the same time.

Happy because, obviously, I love to see people with Down syndrome exceeding society's expectations for them.  I want to stand up sometimes, and clap and cry and pat them on the back and hug their mommies and say WAY TO STINKIN' GO!

But also sad.

Sad because I hate celebrating something that typical people do all the time.  I've never seen a video about John Doe who owns a business - with phrases like "Blonde Chicago Man Owns Business!" while his mother is being interviewed, saying things like "You know, we just knew he could do it - ever since he was born, we just knew he would do great things! We always treated him just like our other children!"....

....right.  Because he is a children.

Just like typical kids, sometimes kids with Down syndrome act like weirdos
and do crazy things when their ma pulls the camera out.
I get it.  I totally do.  We're pleasantly surprised when we see people with Down syndrome accomplishing things like this.

But I wish we weren't.  

Maybe when Carter is voted homecoming king, it won't be headline news.  Because he won't be a school mascot - rather, he'll just be everyone's friend.

I understand why we have Down syndrome Awareness Month - because today, right now, there is a need for awareness and acceptance in our society.  But begging you to love and accept my child is not awareness.  The photo memes on facebook - they're cute.  The IDSC actually did one of Carter's picture - and it was on my desktop for a long time.  But.  I've never seen a photo circulated of a typical child with things like "Just love me for me!" or "I can do so many things!"....right?

Maybe that's more like begging and less like awareness & acceptance.

Food for thought.


Here's what I'm trying to say.

I have a friend who happens to have Lupus.  Notice, I don't refer to her as my 'Lupus Friend'.


Anyhow.  I can learn about Lupus - I can read lots of articles about my friend's symptoms and treatment plans.  I could even start a Facebook group about Lupus Awareness, and make lots of pictures with her face, and add quotes like "Lupus Doesn't Hold Me Back!" and "I Can Do Lots Of Things!".  I could be a Lupus expert.

I could do all those things and still not know her.  Learning about Lupus doesn't tell me the really cool things about my friend.  Like the fact that she loves to drink her coffee on the porch of her beautiful, old farm house.  Or that she has this awesome little prayer house tucked back in the woods, and she spends many hours there on her knees (or in her chair...) for her kids, her friends, and her church.  Knowing everything there is to know about Lupus is okay - but it doesn't tell me that she and her husband are crazy about kids and the next generation, so they lead a successful Wednesday night kids program at our church.

When I learn all I can learn about Lupus, it sometimes gets in the way of what I can learn about my friend.

I just don't want everyone to learn all they can about Down syndrome, so that it gets in the way of what they can learn about their friend.  A friend.  A student.  A neighbor.  A person.

If you take away one little tiny thing from Down syndrome Awareness Month, let it be this:

Some people have blonde hair.  Some people like sushi.  Some people drive toyotas.  Some people live in apartments.  Some people like the beach.

And some people have Down syndrome/Cerebral Palsy/Leukemia/Autism/Spina Bifida/Lupus....

I don't mean to oversimplify - but please, don't learn about the diagnosis only to miss out on a special friendship with a person.

Yes, I blog about Down syndrome or special needs parenting sometimes.  Because it's part of our life, and part of who Carter is.

Part.  Not all.  


So, I'm finished with Down syndrome Awareness Month.  Well, we all are - because it's almost November.  And for us, November is special - because it's Carter's Homecoming Month.

More on that later.

For now, just love/reach out to/get to know someone who might be a little different than you.  If you can do that, then I can chalk DsAM 2013 up as a wild success.


One Thing I Know For Sure: He's just a normal kid!


  1. I sooooo get your happy/sad commentary about DS awareness. That's how I feel about Autism. Yep, Sarah has it, but it is not who she is, it is what she has. Huge difference!

    Keep on keepin' on, Ash. You and Jake are phenom parents of a little boy - who happens to have DS.

  2. Amen! I agree with you! The awareness vs begging. Asking for special considerations yet wanting others to treat them the same. A very fine line...you very eloquently shared what has been mulling in my stressed, overwhelmed brain for quite awhile. Thank you! :-) Cute pictures too of course!


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