The Trouble With Down Syndrome Awareness Month

20151003-126.webOctober is Down Syndrome Awareness Month! Yippee!

Around the country, people are wearing crazy socks and attending Buddy Walks. Some folks with Down syndrome are being featured in a video shown in Times Square, a teenage soap opera has a Down syndrome pregnancy storyline, and renewed emphasis is being placed on discouraging people from using the R-word.

Pretty awesome, right?

As a mom to a five year old son with Down syndrome, I feel conflicted at this time of year. Some years we participate in Buddy Walk, and some years we don’t. In the beginning, we enjoyed them because it gave us the opportunity to meet other families, but the down side is there’s a little bit of a “preaching to the choir” aspect to it. Perhaps if the standard Down syndrome colors of blue and yellow were as ubiquitous in October as the pink is for breast cancer I’d feel a little bit more like we were accomplishing genuine awareness. Speaking of which…

Aren’t most people aware of Down syndrome these days?

A quarter of a century ago, ABC broke new ground by featuring the character Corky Thatcher (played by Chris Burke) in the series Life Goes On, introducing the American audience to a teenager with Down syndrome. More recently, Fox’s Glee included the recurring character of Becky Jackson (played by Lauren Potter). Girls with Down syndrome are being crowned Homecoming Queen and kids with Down syndrome are featured in Nordstrom, Target, and Care.com ads.

A lot of the language used these days when talking about people with Down syndrome focuses on how much longer they are living, what they are able to accomplish when given opportunities, and debunking myths such as “they’re always happy” (though I have to admit, my son really IS happy most of the time). It’s important to portray Down syndrome positively, because things have changed so much for people with the condition over the past few decades, and we don’t want our kids to be overlooked (or worse!) because of the old ways of thinking.

But can I be honest with you for a minute?

20151010-10-Edit-3.webWhile I expect people to treat my son just like everyone else, a part of me feels a wee bit hypocritical, because the truth is that he IS different. The little boy who brings joy to the faces of the spectators when he hits the t-ball and grins at the crowd the whole way down the first base line is the same little boy who causes his school aide to panic when he bolts away from her with little regard for his safety or hers. The precious child who is always willing to give a hug to his friends and family is the same child who has no concept of “stranger danger” and is statistically more likely to be abused or taken advantage of due to his speech delay and trusting nature.

One thing I’ve learned in the past five years is that not even our closest friends and family members truly understand what it’s like to raise a child with Down syndrome. Sure, they catch a glimpse every now and again of the pull-up that he wears because he still isn’t fully potty trained at age five, they know that therapy is time-consuming and expensive, and they see him occasionally bolt away from my reach without warning, but they don’t always see my worried face when he gets a little too close to a stranger, the struggles we have with abstract concepts during homework time, or the frustration I feel because the drive-thru operator didn’t give me a straw for his milk and he doesn’t have the motor control to drink it straight from the container without spilling it.

By all means, let’s tell the world how wonderful people with Down syndrome are and how much they can do!

But let’s not gloss over the fact that raising a child with Down syndrome is a different path, and let’s take the time to help our friends and family understand how to best support our child. My son is an enthusiastic hugger, but he shouldn’t be expected or encouraged to hug everyone – he needs to learn that his body is his own. My son takes great joy in running at inappropriate times – and even I’m not immune to that giant grin! – but he’s still misbehaving, so he shouldn’t be rewarded with a smile and laughter.

We’re almost at the halfway point of Down Syndrome Awareness Month. While you’re walking, or wearing your crazy socks, or doing whatever you do to celebrate your child with Down syndrome, I encourage you to share your story – all of it – with the people you know. Their increased awareness about not just the gifts, but the challenges, may come in handy one day when you least expect it.

Andi Sligh

Have you tried our monthly Mom’s Group yet? It’s a safe and encouraging time for moms to come and share their stories. The group meets on the first Thursday of each month at 10:00 am at the Kid’s Creek Office.

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Andi Sligh is the author of There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, an ebook for parents at the beginning of their special needs journey. She is an ordinary mom living an extraordinary life on the Alabama gulf coast with a daughter with cerebral palsy, a son with Down syndrome, an adventurous husband, a wild Westie, a rescued Schnoodle, a camera, and a worn out pair of running shoes. She blogs it all at Bringing the Sunshine and tweets a little @AndiSligh.

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