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If You Love My Child With Down Syndrome, Please Do This One Thing

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“What can I do?” We heard this a lot in the first few days after our son Will was born and — surprise! — he has Down syndrome. People brought food, diapers, helped entertain our older son, my mother-in-law organized my entire kitchen (and trust me, I’ve considered faking an illness to get her to do it again), people came to sit and talk and hold the baby. He’s super cuddly, can’t blame them. Our local Down syndrome support organization, the Down Syndrome Association of Central Florida, hosts an annual “step up” walk, and that’s a great way to help: Donate $20. Walk with us. Wear the shirt. Friends and family and co-workers stepped up and helped us raise tens of thousands of dollars to help families like ours living with Down syndrome. It really helped us get through the early days, weeks and years when we didn’t know what the future would hold. Not that we do now, but we do have our feet under us.

The author's son standing in front of a mirrored wall that says "I Will"

So now my son is 5. He’s awesome. Will is going to kindergarten, and he charms everyone in his path. He’s learning to read and write. He loves “Blue’s Clues” and “Star Wars.” He’s done modeling work for Target, Legoland, Disney, Nemours and the Legal Aid Society of Central Florida. He’s quite the ambassador for the 21st chromosome. And people still, occasionally, ask, “What can I do?” And now I have an answer:

What I want people to do is to help shut down people who use the R-word or any of its iterations in the pejorative. It doesn’t take a lawyer, it doesn’t take a hero, it just takes each and every one of us to say, “Hey, that’s not cool.”

I spend a lot of time on Facebook. That’s an understatement. I love politics and can’t get enough of my daily fix in this election year; Facebook and its newsfeed are my lifeline. So, occasionally, I run across a meme someone has reposted with a totally unnecessary “r-word” thrown in, or worse, and I always comment. That’s not cool. It isn’t OK. I have a son with Down syndrome and that’s offensive to people with intellectual disabilities and those who love them. I’ve gotten less confrontational and more polite about it, but still firm. Don’t argue with me about it. Don’t say “I didn’t mean Will!” Don’t tell me I’m too sensitive and please, do not invoke the first amendment because in addition to being a ferocious warrior mom, I also happen to be a lawyer, and if you’re arguing that this is a first amendment issue, you clearly are not. Don’t tell me you call your own kid with an intellectual disability a “r-word,” that doesn’t make it OK. That makes you a jerk. Do not try to explain the etymology or semantics to me. Just stop.

And that’s where we come to you. “What can I do?” Speak up. Don’t let it go on your watch. If you know my son, if you love my son, say something. A simple “that’s not cool” works wonders. “Please stop using that word.” It’s hard, I know, because people tend to double down on it and turn it around on you like you’re the problem. You aren’t. I will come to your defense, but it means a lot to me and my family if someone else, someone who may not have a child with Down syndrome, someone who might not be a lawyer, speaks up first. We’d like to rely on our allies sometime.

If you know us and you have a voice and a forum, please speak up. If you don’t, if you let it go, your silence speaks volumes.

What can you do? Speak up.

Will you?

Follow this journey on That Mom Dot Com.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

Originally published: July 14, 2016
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