Lately, I’ve seen a lot of posts with titles like, 10 Things You Should Never Say to a Parent of a Child with Down Syndrome, or 20 Things You Should Never Say to a Parent of a Child with a Disability. While there is validity regarding what not to say in some of these lists, such as “What’s wrong with her face?”, I feel that many of these articles are unfair. Here’s why.
If you happen to be the person who doesn’t have a child with Down Syndrome and you see some phrases below that you’ve said in the past, I suspect that, for a moment, your breath catches and heat warms your cheeks as you’re washed over with embarrassment and shame. I’m here to tell you that it’s okay. I don’t blame or scorn you for the things you may have said, because chances are, you said them in an attempt to extend empathy to Ella and I (or people like us).
So, let me clear things up. Following is what to NEVER say to the parent of a child with a disability, some things you shouldn’t feel bad about having said in the past, and some suggestions on how to give a more educated response along with some always-welcomed phrases that we find encouraging and up-lifting. Fair?
Things to NEVER say to a parent of a child with a disability:
1.) The R-word.
I don’t care when, where or in what context you might think it. Just don’t use it. It’s offensive. Maybe you’ll never understand this, but trust me, it’s derogatory and unnecessary.
Things you may have said in the past, but need to not say in the future:
1.) “I’m Sorry.”
When Ella was born, I had MANY people come up to me with tears in their eyes. “I’m sorry,” they said. For some, they may have been sorry that Ella had Down Syndrome, but for others, they may have been mourning with me, the ideals that I had in my mind about what my daughter’s life would look like. I don’t blame them but I know now that there is nothing to be sorry about. The last thing a parent of a child with Down Syndrome needs is pity. The “I’m sorry”s added to the darkness that will forever taint my memory of Ella’s birth. Instead say, “Congratulations!” He or she is a gift from God, not a burden or punishment.
2.) “She doesn’t seem to have it that bad,” “She looks so normal” or “She is so high functioning.”
I recognize what you’re trying to say – she doesn’t exhibit all the symptoms you know to be associated with Down Syndrome or she exhibits them to a lesser degree…I do it too. That being said, if you think about it, you probably didn’t really know what many of those features are.
Let me explain how Down Syndrome works. In a “typical” body, there are 46 chromosomes. Individuals with Down Syndrome have an extra copy of the 21st chromosome for a total of 47. This means that they will have extra of whatever genetic material is contained in that 21st chromosome. Down Syndrome is black and white. Aside from mosaicism, they either have the extra chromosome or they don’t.
I would have to keep myself from punching you if you ever said this to me. Luckily, no one has. The reality is that aborting is common. 94% of pregnancies diagnosed with Down Syndrome are aborted, so it’s on the radar. Personally, I believe life begins at conception, so even if I had known that Ella has Down Syndrome (which I didn’t), I wouldn’t have aborted. We didn’t know, we didn’t ask, and didn’t have any tests done. For us, it didn’t matter.
Instead, ask “Did you know he/she might have Down Syndrome before he/she was born?” You’re curious. Most of us get that, and it’s okay.
4.) “I’m not strong enough to have a child like that.”
And you think I am?! [Insert sarcastic tone here] It’s not like I thought “I’m going to show all those weak people just how great I am by having a child with a disability!” It’s not about whether we are “strong” enough, it is about embracing God’s gift to us and the grace we need to get through each day, no matter whether we have a child with a disability or not. Same goes for “A special child for special parents.” This one I tell you, looking you straight in the eye, hand on your hand, because I know that you had the best intentions when saying it. But here’s the truth – we’re no more special than you, or the person next to us on the bus. We’re all precious in God’s sight.
5.) “My uncle’s cousin’s plumber’s son had Down Syndrome – he was always so happy.”
I get what you are trying to do here. You are trying to contextualize my situation. You are trying to find a way to relate but chances are you can’t and that’s okay and I do not blame you for that. And for the record no. No, they’re not always happy. Ella get’s angry, she fights with her brother, she gets sad when she is reprimanded or discipline and she gets jealous when someone has something that she wants. Trust me, Ella, like ALL other people with Down Syndrome, experience the full spectrum of human emotion.
6.) “They can do lots of things”
Now, you’re right on this one…but for some reason, I suspect that “lots” in this case, means something different to you than it does to me. They can do lots of things – Ella can do anything she puts her mind to. Let’s let her decide what she can and cannot do.
Things we like to hear and are always welcomed:
1.) Celebrate the victories!
For children with disabilities the victories often take more work and more patience, but when victory comes, it is all the sweeter and we love to celebrate with people who love our children.
2.) “She is so beautiful” or “She looks just like you”…
Well, at least I think so and I hope you do to. But EVERY parent loves to hear that their child is beautiful.
3.) “God is going to use her in amazing ways.”
Yes, he will. Let’s find out what those ways are together.
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