10 Things to Never to Say to a Parent of a Child with Down Syndrome

what not to say to friend with down syndrome baby

So, one day you’re just hanging out at home, enjoying a cup of coffee and a good book. Your phone rings. It’s your best friend, she’s crying on the other end of the phone, and through her tears, you hear her say, “I just found out my baby has Down syndrome.” You’re shocked. You don’t know what to say. You thought she was calling to tell you “It’s a girl!”

You’re out at your favorite shopping mall. You’ve got a nonfat vanilla latte in one hand, and your Nordstrom bag in the other. As you walk toward the food court to grab something from Chick-Fil-A, you bump into your co-worker who has been out on maternity leave. You take a peek into her stroller to look at her new baby, and you can’t put your finger on it, but you can just tell something is “wrong.”

It’s Saturday. You take your six-year-old to one of those indoor playscapes for his classmate’s (Noah) birthday party that your son got an invite to. You bought a small Lego set for a present. You walk into the party, put the gift down, and as your son his taking off his shoes, a mom walks over to you with their son with special needs and says, “Hi, nice to meet you. This is our son, Noah.” You look at Noah and you’re in shock. You had no idea your son’s friend from school, Noah, had special needs.

I get it. you don’t know what to say. You’ve never met a child with Down syndrome before. Sure, you’ve seen a few episodes of Glee, and you’ve saw that story pop up on your Facebook timeline about that girl with Down syndrome becoming the prom queen, but you’ve never met a child with Down syndrome in real life before!

You have no idea what to say them or their parents.

There are a lot of things you could say, but in this blog post, I want to give you a few things, not to say.

What Not to Say to a Parent of a Child with Down Syndrome

1. So, which one of y’all gave him the extra Chromo?

I’m not kidding! Someone really said this to us!!! Noah was only a few weeks ago at the time. We went to the lab to have some blood drawn, and a lab tech actually asked us that question. I was like, I know we’re cool and all…and have a sense of humor…but you don’t know us like that! Actually, I didn’t say that. And I can’t believe she actually asked us that question, but she did.

If you’re thinking of saying that to a child with Down syndrome. Don’t.

2. Kids with Down syndrome are angels.

First, this is just really bad theology. Kids with Down syndrome don’t have chubby cheeks, wings, halos, and fly around Heaven all day. (actual angels don’t either, but that’s a different post for a different day.)

The truth is a child with Down syndrome is just like any other child. They don’t listen sometimes. They disobey sometimes. They need to be disciplined sometimes. To put it another way, they aren’t angels. 🙂

3. God only gives special kids to special parents.

I’ve written about this before, but the sad reality is that most parents that get a prenatal diagnosis of Down syndrome, abort their child. So, if you want to be literal, the opposite would be true. It seems that most parents who get a child with special needs are bad parents (taking the life of your child in the womb, is not what a good parent does.)

We hope to see that sad reality change.

4. I’m so sorry.

This was one of the first things my wife’s OB/GYN said to my wife. Anytime another human being is born the proper response is “congratulations!” not “I’m sorry.” Don’t ever tell a new parent you’re sorry for the birth of their child.

5. Is he ok?

I understand what you’re asking, but you need to know that having Down syndrome means they have 3 copies of their 21st chromosome, it doesn’t mean he is sick.

6. Did you guys do prenatal testing?

This question implies that a parent of a child with Down syndrome missed something. That surely they would have chosen” not to have their child if they would have known beforehand that their child would be born with Down syndrome. Please never ask this question.

7. Are you going to have any more kids?

This question implies that if a parent of a child with Down syndrome had another child with Down syndrome, that child would have Down syndrome…and that would be a bad thing. The truth is, it’s up to God if a child is born with Down syndrome or not. A parent has nothing to do with it. Also, you’ll find that parents of children born with Down syndrome really love their kids. They aren’t a burden, and they would gladly “take another” if that’s the plan God has for them.

8. Are your other kids ok?

I’m not sure. Did he scrape his knee? Is he eating glue? If not, he’s probably ok.

9. Is he high functioning / Is it severe?

When people ask this question, they are implying that some kids with Down syndrome are smarter than others. The truth is, kids with Down syndrome are just like all other kids. They have different skills, different strengths, different weakness.

Every child is unique and should celebrated, not compared.

10. What is wrong with him?

I’m not sure? Does he have a cold? Does he have a fever? Does have red and green spots all over his arms and legs? If not, probably nothing.

Bonus thing to never say to a parent with a child with Down syndrome (or just ever) – the word “retarded.” Don’t say that.

Grace. Lots of Grace.

I don’t want to be too hard on you. You don’t know what to say. You were just at the mall to grab something real quick, then head home. You didn’t know you were going to bump into your co-worker and her new baby. And you certainly didn’t know she has a child with Down syndrome. It’s all good. There’s lots of grace.

If you’re looking for some things to say, try these instead.

Are you a parent of a child with Down syndrome? If so, which of these have you heard before? What have you heard that I didn’t include on the list? Leave a comment and let me know!

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. Tina van der Wal-Reitsma says:

    My sister in law told me (after a week that our Els was born) that if they had found out that their daughter Emma had ds with 20wks. They would’ve aborted her cause it would have been to bigga straing on the rest of the family(reed a 7 year old who lives have the week a dads)

    Or

    If you would have known would you have ended the pregnancy? We could have known of we dus the pre-screning. But we didnt pre-screen cause what ever they may of may not have found. Els is our baby whom we will love and raise regardless of the outcome of any test

  2. Kristen smith says:

    Similar to “Is it severe”, but I always got this question in the form of “How Downs is she?” I always answer with the explanation that it’s not like autism, there’s no spectrum. It’s a yes or no based on chromosomes,and how far she goes in life is an individual thing like everyone else. My job as a parent is to reach her full potentional, just like with my “normal” son.

  3. Thank you for the things to say to new parents. I especially liked the one by Micah that God loves all people regardless of color, wealth, etc. and I definitely feel that a child can show us how to love and love without reason. They certainly show us something about ourselves.

  4. She’ll probably outgrow it.

  5. I was asked one day is it contagious…. Like really how ignorant can you be. Anyways I just politely said no., and went about my business.

  6. I’ve heard 2,3,4,6 And 7 as a mother who gave birth to a baby boy with Downs. He only lived for two years. I can add the comment “Did you eat anything forbidden during your pregnancy?” That was the first comment I got from my family.
    And one nurse at the hospital where he was born said to me “Oh does he have Downs?! They are all so lovely! I know because I have a friend which grandchild has It. Me just “How can you possible know anything about the temperament and personality of my child who was born just yesterday?!” Another sad thing. The nurse from health center met me on a walk with my child in the children waggon. It was a bright sunshiny day, so I had hanged a thin blanket over the waggon to protect my child from the strong sunlight. The nurse stopped me and said “You do not have to hide him”. Do I need to tell how angry I got! She probably meant to say something nice with this, but it really only told me how she was actually thinking!

    Lots of Christmassy greetings to you and keep up the good work! 💞

  7. Pamela Skinner says:

    We were told, “Well she doesn’t look like she has Down syndrome.” when she was a baby as if that would be a bad thing. Like if she had more physical features commonly associated with individuals with Down syndrome she wouldn’t be as cute. She did in fact have physical features that are associated with DS… her almond shaped eyes are the most beautiful, brilliant blue eyes I’ve ever see. Not to mention those sandal gapped toes!! We could just eat her up!

  8. Marsha Cowan says:

    Thank you for the delicate way you expressed our blundering inconsiderate statements. Most of us who did not know, now know. We accept this information gratefully. Thank you.

  9. Michael Brown says:

    My son has DS. A nurse (would you believe it?) who was giving him a routine vaccination said, “You know how they don’t live very long?” I was a bit taken aback and said something like, “Well, the life expectancy of people with DS is still a little lower than that of people without DS, but it’s vastly higher than it was even 30 years ago.” She looked at me as though I was a bit mad, and replied, “Yeah. Well, they’re not supposed to live for very long. But I know one called Neil who’s 56 and he’s doing really well. He’s in all the family wedding photos and everything…..” Well – good for Neil, but what training courses did that nurse miss?!

  10. We are adopting twins. The day they were born we were told one of the twins had down syndrome. We were asked did we still want to adopt her? Yes! She was our gift from God! 17 years we prayed for a baby and God blessed us with two! We never thought once of not taking them both home with us! The worst thing said so far to date is my brothers boss asked him “So are they going to keep the “f” up one”, speaking of my daughter with down syndrome! 🤨 We’ve been asked “do you think she’ll outgrow it” and we’ve been asked “how severe it is”. We’ve been told “maybe she only has a small touch of Down syndrome”. We love her and her sister the same and thank God for blessing us with them both. 💕

  11. I always get the “he doesn’t look like he has downs” or “awww they’re all such lovely people” he’s three he can be just as much a little terror as any other three year old boy.

    I was 18 when I was pregnant with him. I found out at the 12 week scan he had downs and was told my best option would be to terminate as I would miscarry at 16 weeks. I decided I would go along and let nature take its course. They where very unhappy by this I had to have 2-3 weekly scans and every time I went they told me to abort. They said he would need surgery and have clubbed feet/legs. He was perfect when he was born! No surgery needed at all. I’m thankful for you spreading the fact kids are kids no matter how many chromosomes they have.

  12. I just discovered your blog and it’s awesome.

    I did not ever imagined that some nurses can be so rude. I just had twins in August and the big surprise was that my son has DS. Beside various comments and questions like those you mentioned, I got few very painful comments “you should breastfeed mainly the girl, the boy is f*up anyway”, “hope you’ll take him home also” and “he’ll be retarded, your life is over”.

  13. “They” are such Happy and loving children.
    Like “they” will always be children and never grow up. And I heard this the most when my husband had been transferred to a new state—and had to meet a lot of new people. My son was 3 at the time and whoever said “terrible twos” didn’t wait long enough because Three was hell! With frequent Temper tantrums —so “happy and loving” was not describing my son at that point in my life!

  14. Stephanie Messina says:

    Are you and your husband related?
    Do you want to give the baby up for adoption?
    They must have done something horrible in their past life?

  15. I had a family member say “ it must be their side of the family, not ours. And another family member prayed the genetic testing was wrong and because it wasn’t wrong they stated “ I have no more faith in god”
    Really ?????

  16. When people say “that Down Syndrome boy”. We have to remind them of People First Language: that he’s a boy first and he has Down Syndrome.

Trackbacks

  1. […] 10 Things to Never to Say to a Parent of a Child with Down Syndrome […]

  2. […] 3. 10 Things to Never to Say to a Parent of a Child with Down Syndrome – If you’re a parent of a child with Down syndrome you may have heard phrases such as; “I’m so sorry.”, “Is he ok?”, and many others. In this blog post I share the top 10 things to never say to a parent of a child with Down syndrome. Feel free to pass it along to a friend if you need to. 🙂 […]

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