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What to Say (and Not Say) to Parents of a Child With Down Syndrome

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One of my thoughts when I learned that my daughter Alice has Down syndrome was: “How am I going to tell everyone?  And how will they react?”

Well, we’ve gotten various reactions — to say the least. I completely and totally understand that it’s an awkward situation no matter what.

I remember talking to my husband Tim about it before we brought Alice home from the hospital. We said, “How are we going to tell our neighbors?!” The next day, Tim was outside putting an “It’s a girl” balloon on our mailbox. Our next-door neighbor came over and congratulated him. Tim blurted out, “Thanks. She has Down syndrome.”

When I think about this moment, I can’t help but laugh. But it’s true— there is no good way to break the news to people! Tim said that our neighbor was completely taken aback and said, “Um…I don’t know what to say.”  This makes me laugh so hard because it’s such an understandable response. No one knows what to say! We totally get it.

That’s why I’ve compiled a few of the best responses we’ve gotten so far, along with a few not-so-great responses. Please take note of this not only for us, but for anyone else you know who might encounter a Down syndrome diagnosis for their child.

Note: I have to say that I completely understand that everyone has good intentions. So even though I qualify some of these responses as “not-so-great responses,” please know that I know the intention was good.

Here’s the “not-so-great” responses we’ve received:

1. “I’m sorry.” 

This is the worst response we’ve gotten. Why are you sorry? “I’m sorry,” implies that something is wrong. Nothing is wrong. We have a beautiful, healthy, heaven-sent baby girl. Please don’t be sorry. We aren’t.

2. “I feel bad for you.”

OK, no one has come out and said these exact words, but people give us that sympathetic look that speaks the words for them. Please don’t feel bad for us, there is nothing to feel bad about. We don’t feel bad for ourselves and you shouldn’t feel bad for us either.

3. “I can’t even imagine.” 

I understand that people think this is a good response because they think they’re being honest by saying they can’t imagine themselves in our situation, but it comes across like we are experiencing some terribly traumatic event. We aren’t. We just had a beautiful baby—and, oh yeah, she happens to have Down syndrome.

4. “You’re going to make a great caregiver.” 

Um…thanks? I appreciate the thought, but I’m not going to be Alice’s caregiver, I’m going to be her mom. And I’m going to do everything in my power so that she’s independent and self-sufficient so she won’t need a caregiver.

5. “You’re going to need a lot of help with Alice for a long time.”  

No we won’t. But thanks.

6. “Are you sure she has Down syndrome? She doesn’t really look like it. You might want to double check on that.” 

Yes, someone said this to me (Sigh). Yes, she has Down syndrome.  The testing has confirmed it.

7. “You’re too young to have a baby with Down syndrome. I don’t think she has it.”

Again… thanks?!  I’m 32. It is kind of a misconception that only “older” moms can have a baby with Down syndrome. Although the chance of having a baby with Down syndrome does increase as women age, 80% of babies with Down syndrome are born to women under the age of 35. Most of the moms I have met had their babies with Down syndrome in their late 20s or early 30s.

8. “She doesn’t have all the features of Down syndrome and she might not have it. If she does, here is some holy water.”  

Again, yes, someone actually said this to me. Welp, Alice is not going to be cured from her Down syndrome with your holy water (I just can’t help but laugh).

9. “I know you said she has Down syndrome…but she’s still so cute!” 

There is no need for “but” or “still” in that sentence. Yes, Alice has Down syndrome and yes, she is so cute. You can have Down syndrome and be cute. They aren’t mutually exclusive.

Aside from the “not-so-good” responses, we’ve also received some good ones.

We have been completely overwhelmed by the amazing responses we have received. The outpouring of love and support has completely blown me away.

Here are a few of the awesome responses:

  • “It will be OK! It’s just an adjustment. You guys will be the best parents to her.”
  • “I have no doubt that you and Tim will conquer this like none other. She’s surrounded by so much love!”
  • “I can’t wait to meet your perfect little one! I know that she’s right where she’s supposed to be. That little girl is loved beyond measure and she’s so lucky to have the family that she has.”
  • “Just want to congratulate you on your new baby girl!  Although we have not been in this particular situation, we’ve been in other unexpected situations that at the time seem overwhelming but those exact situations have transformed into our greatest blessings. We are so excited for this new blessing in our family!”
  • “Alice is a blessing and will no doubt have many lessons to teach us all.”
  • “I know you’ll continue to be amazing parents no matter what extra difficulties come your way.”
  • “I feel like you were chosen.”
  • “I truly believe that God chose you guys as her parents. God chose you.”
  • “God doesn’t give you anything you can’t handle. I know you’ll find the light in this or you will stumble into it when you least expect it. You can do this. You will do it. And I fully believe that you both will do it with a ton of grace.”
  • “I am so happy for you on the birth of Alice! God could have chosen anyone to bless Alice with as her parents and I know He chose the right couple.”
  • “Your life may look different than you had planned. But you got this. She is perfect. She is exactly the way she is meant to be and in years you’ll look back and not trade her for any other way.”

And the most common and perhaps the best response we have received…

“Congratulations!  She’s beautiful.”

Thank you.  She sure is.
A babygirl with Down syndrome laying in a boppy with a sign that says "I am heavensent."

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Photo submitted by contributor.

Originally published: March 29, 2020
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