How Should I Talk To A New Parent of a Child With Down Syndrome?

Maybe you know someone who has just received a prenatal Down syndrome diagnosis, or know someone who has just welcomed a child with this diagnosis. It can feel like you don't know where to start or what to say. How do you know what the right thing to say is?

We heard many wonderful things when our son was born, and we heard many not-so-great things. I think almost everyone had good intentions, but some things were a little hard to hear. I shared a few examples with the hope that you will be able to know the better thing to say, too.

1. What They Said: I'm so sorry
    What I Wish They Said: Congratulations

Often parents of kids with disabilities don't hear any congratulatory remarks when their child is born. Or, at least not at first. Please congratulate your friend or loved one about their child just as you would any other child. All babies deserve to be celebrated, and hearing some initial positivity will mean the world to the parents. Do NOT say "I'm sorry". Focus on how wonderful the new addition is, instead of any fear or worry you may have and expect the parents to have.

2. What They Said: How bad is the Down syndrome?
     What I Wish They Said: How is he doing?

I somehow found the words to respond respectfully when someone asked me this, but it was still hard. Don't focus on the diagnosis when you are talking to the child's parents. Instead, focus on the baby and ask how their child is doing. That way, if the parents wish to share any health-related information with you, they can. If not, they don't have to share anything with you until they feel ready.

3. What They Said: He doesn't look very Down syndrome-y so he must have it mild!
     What I Wish They Said: He's beautiful!

How "severe" someone's Down syndrome is has nothing to do with how they look. Also, every person with traditional Down syndrome has an extra chromosome. They don't have a portion of an extra 21st chromosome, they have a full extra chromosome. There is no mild Down syndrome or severe Down syndrome. There's just Down syndrome. Unless, of course, a child has mosaic Down syndrome. However, mosaicism is very rare and most babies with Down syndrome have an extra chromosome in every cell of their body. I think people are trying to make parents feel like their child isn't unattractive by saying they don't look like they have Down syndrome. Again, well intentioned remarks that can actually be quite hurtful. Just comment on the baby's beauty because I think we can agree that every baby is beautiful.

4. What They Said: "I love Down's kids!"
     What I Wish They Said: "I love kids with Down syndrome!"

Person-first language is a big one. Please don't refer to the baby as a "Down's baby". Just hearing it in my head makes me cringe. My baby is a baby, who happens to have Down syndrome. Please put the person before the diagnosis when talking about someone with any disability, not just Down syndrome. It shows respect and encourages acceptance.

This small attention to what you are saying can truly make a difference for any parent of a child with Down syndrome. It can demonstrate how much you care for the baby, the parents, and the family.

If you are a parent of a child with Down syndrome, please share some other ideas of how you should speak to new parents about their baby. I am sure I have missed some good ones that are very helpful!


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