It’s a normal day. In fact, it’s more than normal.. it’s fantastic. The kids are well behaved, Reid took his nap on time, I’ve gotten some work done and am taking a few precious moments to talk to a friend. We’re catching up. She’s recounting a story, and we’re laughing so hard tears are rolling down our cheeks and stomach muscles hurt. And then she says it.
“Can you believe she said that? What is she, retarded?…”
She keeps talking. I can’t hear what she’s saying. My stomach immediately hurts for a different reason. Not from laughing. Instead, it hurts because I’ve been punched. Not literally- but YES. Literally. I can no longer hear my friend because of inner dialogue. A million questions run through my head as she’s still talking without even noticing that my smile has disappeared, and my eyes have wandered, and I’m no longer with her.
I’m no longer with her because I’m inside my own head.
Is this person really my friend? Of course she’s your friend, you’ve known her for years. She’s done so much for you and vice versa. But surely, she can’t really be my friend and know what that word does to me? Kia, you’re over reacting. Should I say something? Yes. I should say something. NO. You shouldn’t, it would be awkward. Why should I always care about others feelings at the expense of my own? She didn’t mean it the way you’re taking it. She wasn’t talking about Reid. It’s not a big deal. YES. It IS a big deal.
And she’s still talking. Still unaware. Do I ruin the moment for her? It’s already ruined for me.
I am the mother of 3 amazing children. One of those littles happens to have Down Syndrome. Knowing what he and his friends have to fight to accomplish on a daily basis makes me quite sure that they’re actually the smartest, hard working people on the planet. I am convinced of this, no one can change my mind. I absolutely know that my child, my friends children, Reid Christopher’s peers are NOT who you are talking about when you use the word.
Yet it still hurts. It takes my breath away. It makes me re-evaluate how important I am to you, and how much I value our friendship.
All that can change, with just one word.
If I’m being completely honest, hearing that word hurts more than a racial slur thrown in my direction.
Every time I hear it, I’m taken back to the moment that we were given Reid’s diagnosis. Any parent who has experienced an at-birth diagnosis knows that it’s a very UGLY moment. To have something completely unexpected handed to you after you’re experiencing one of life’s greatest gifts, the birth of a child, is a shock. Going back to that moment reminds me of everything I was deathly afraid of when I learned he had Down Syndrome. That fear had nothing to do with Reid himself, but what barriers he’d have to break for acceptance. I knew at that moment I wanted to protect him from the ugliness of the world, whether he knew about it or not. The word single-handedly makes fun of an entire community who would NEVER do the same to you.
Our society wants parents of kids with developmental delays to just “get over it”. To understand that you “didn’t mean it that way” and that you’ve “always said it”. We’re told we’re being overly sensitive. We’re told we shouldn’t take it personal because you’re not talking about MY child. While I absolutely know that my child is smart and thriving, you have to understand that you are talking about SOMEONE. You may have removed that fact that this word is used to describe a group of people… but I haven’t. We haven’t. And we hurt.
I’m here to tell you that I CANNOT just get over it. Using the argument that you’ve always done something a certain way is not good enough. Using the argument that you aren’t talking about my sweet boy does not give you a pass. You’re human, and while all humans most definitely make mistakes, you also have the capacity to learn, grow and do better.
I want you to learn, grow and do better.
For Reid. For his friends. For the hearts of Moms and Dads who are broken when they hear the senseless word by people who claim they care about us and our kids.
I know that it’s hard to change your perspective. Hard to change something that you’ve always said and try to erase it from your vocabulary. I’m asking you to do something hard, uncomfortable and in some cases, even unnatural to you.
I’m asking you to have compassion. To remember Reid’s sweet face when those words are about to cross your lips and stop.
And as you’re working to learn, grow and do better, if you happen to slip up…it’s okay to stop and regroup. It’s okay to look at her and say, “Sorry. I’m working on not saying that anymore. I understand what that word means to you. I value you and your child and I am sorry.”
Because that’s what we parents of kids with special needs want. We want our kids to grow up in a world where they aren’t unconsciously being made fun of. We want to know that our feelings and our relationships are valued by you. We want normal, perfectly imperfect days of catching up with best friends, laughing so hard that we cry. Enjoying moments that won’t be ruined by having hurtful words carelessly thrown around by the people we value. We want to STAY in those moments. Moments that aren’t reminders of what are kids are up against.
We want to learn, grow and do better together. We’ll do the same for you.