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Sunday, July 31, 2011

In Which I Write About Something I Only Know Tangentially

I find myself in an odd position sometimes. Charlotte straddles the line between "normal" (what does that mean anyway?) and "special needs". Clearly, she has a lot of special needs. But now that she's not on oxygen anymore, her needs are much less obvious to the random person we see on the street. It takes a medical professional to realize the tube running down her leg is a feeding tube. Usually people just smile and say, "Her backpack is so cute! Where can I get one?" {Her feeding pump and formula are kept in a backpack that she wears on her back so her tube doesn't pull out. And really? You definitely don't want this kinda backpack, lady.}

More often than not, people see Charlotte, and not her vast amount of special needs. We hear all the time, "She doesn't even look like a preemie!" {which makes me roll my eyes, but I know, I KNOW, people are trying to be nice, so whatever} or "You'd never know how hard she's had it." Which is great and all, but it kinda ignores the incredible path we've had to take. Like we can just forget about the horrors we've experienced because she doesn't LOOK like she has special needs now.

On the other hand, it's true: Charlotte doesn't look like she has special needs. I cannot imagine what it is like to be the mother of a child who so clearly has special needs, especially cognitive special needs. Nor can I imagine what it is like to hear people throw around terms like , "You're so retarded" {spread the word to end the word} or, "Man, I was totally autistic!" knowing that people are comparing the syndrome your own child, the love of your life, has to an action or person that is being ridiculed.

Recently an article ran in GQ magazine, saying Boston had "a kind of Style Down Syndrome, where a little extra ends up ruining everything." There has been a very public outcry (here and here and here and here and I could go on), but only private apologies. It breaks my heart that people think that's OK. That someone thought, "Gee, look how witty I am!" instead of thinking about what a child with Down Syndrome, or an adult with Down Syndrome really is.

Thankfully, not everyone in the public media feels this way. Nordstrom and Target recently ran these ads:


Look people, kids (and adults) with special needs are just that. People first and foremost. They are children who have grandparents, parents, brothers, sisters, teachers, therapists, caretakers, and friends who love and play with them. They are children who need more help along the way. They simply have special needs. They are not defined by those needs, they simply have them.

That girl you see in the grocery store isn't "retarded". She is a little girl who has "mental retardation" (a medical term that is often met with some controversy) or "intellectual disabilities" or "developmental delays." That boy on the playground isn't a "downs kid" he's a boy who has Down Syndrome. Those children own those titles. The titles don't own them.

And it's never appropriate to throw around terms like you own them when you clearly don't. So just don't do it. Just don't. Ever.


  1. love it. and those target ads rock. how cute!

  2. Believe it or not--you know exactly what you are talking about! And you know how I feel about these things...especially the Down Syndrome! I have/will NEVER let it own Jonathan or us. WE own this and you have managed to put it far more eloquintly than my big mouth ever could! lol I wish I had the talent you have for putting all of this into words. I am always excited when you have posted something new as I know it will be an interesting read.

  3. Great stuff! And great job to target!

    As a new parent of a child born with down syndrome I am learning more then I ever thought possible. I'm (sadly) also learning how ignorant I was before Noah was born.

    There is such a need to help create awareness. That is why I am doing a daily one minute "down syndrome video" (this is what the world uses to describe it) about our son who was born with down syndrome. My hope is to create awareness so that the world can see that our family is much more "normal" (like you said, what does that mean anyway!) then un-normal!

    Thanks for loving on your kid-o like you!

    (Noah's Dad)

  4. Love the ads Amanda! Great post!