Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

Ten things not to say to a parent of a child with Down syndrome

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Ten things not to say to a parent of a child with Down syndrome

The National Down Syndrome Society explains that a time of uncertainty and pain often ensues for parents after a child’s diagnosis of Down syndrome. Basic education about Down syndrome will diminish unsavory interactions for new parents and produce greater support.

Ten things not to say to parents:

10. “You must be saints.”

Parents of kids with disabilities are typical. They do well one day and fail the next. They do not want to be on a pedestal.

9. “People with Down syndrome are always happy.” According to the National Association for Down syndrome the most important fact to know about individuals with Down syndrome is that they are more like others than they are different. No one is happy all the time.

8. “Is it because of your age?”

Statistics point to more moms having children with Down syndrome under the age of thirty-five because women are starting families at a younger age.

7. “Maybe the child will grow out of it.”

Down syndrome is a genetic condition. It is not a disease or a sickness. Interventions and medical care help individuals with Down syndrome live full lives.

6. “Will you have more children?”

New parents are acclimating to a diagnosis. Don’t hurl them into the future with personal questions.

5. “Is he/she high functioning?”

Individuals with Down syndrome have strengths and weaknesses like everyone else. It is unrealistic and unfair to put people in boxes of functionality, especially as newborns.

4. “She does not look like she has Down syndrome. Are you sure?”

Results of Down syndrome are absolute through a simple blood test. Babies with Down syndrome are babies first.

3. “Did you know ahead of time?”

Pre-screening is a hot topic with Down syndrome. According to the National Association for Down Syndrome, ‘Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.’  Educated decisions regarding pre-screening is vital but also personal.

2. “It could be worse.”

Processing a new diagnosis is valid. Award parents time to adjust to a different kind of normal for their family with love and support.

1. ‘I’m sorry’ or any statements of pity.

A child has not died. Condolences aren’t necessary. New parents want to experience the excitement that comes with having a baby. ‘Congratulations’ is an appropriate response.

This post was first published years ago at Examiner.com

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53 comments found

  2. Hey Gillian – these are good. But isn’t the truth that most people who have a Down’s baby are grieving at first – in that case, isn’t some acknowledgement that it is hard in some way appropriate? I mean, just saying “congrats” when the person’s joy is almost certainly mixed with pain a bit dismissive of the obvious?

    Reply

    1. I think that congratulations IS the place to start, because first and foremost you should be acknowledging the birth of a child. If you feel a need to mention the diagnosis you can non-judgementally follow-up with an inquiry into how they are feeling or doing about the diagnosis. Some people do not feel significant grief or sadness about the diagnosis. Allow parents their grief and their joy, and support their emotions either way. Plus, doctors and nurses and medical personnel are all focusing on the DS and the possible health consequences, so it might be a nice change for friends to just focus on a beautiful new baby.

      Reply

      1. Hey guys, you both have great points! I’m just one mom, but for me, even though I was struggling with my grief over Down syndrome, I still would have appreciated more ‘congratulations’ from people. Without it, it was almost like their hadn’t been a new birth. Polly and I missed out on that stuff.

        Reply

    2. First of all, it is better to use person first language – better to say baby with Down Syndrome rather than a Down’s baby. You wouldn’t say cancer baby. Put the child, not the diagnosis first. Second, the doctors and medical community as a whole slam parents from the very start with the negatives. They acted as if my son’s birth was death – they didn’t even play the birth song for him at the hospital when he was born – they treated it like a death. Having someone say congratulations and just recognize our child as a joyful baby just like any other newborn helped us to focus on him as our baby and was way more appreciated than pity or focusing on the potential negatives. Let the parents get into that side of it if they want to. Just saying congratulations and ooh’ing and ahh’ing over the baby like you would any other newborn is the best way to start.

      Reply

    3. Like the point above… Babies with Down Syndrome are babies first. They are not down’s babies they are babies wi Down syndrome

      Reply

    4. firstly – i do not have a Downs baby i have MY baby,
      secondly – how can the truth be how most people feel, we are all individuals with individual feelings, and you being a nurse should never assume how people are feeling
      when people congratulate a new mum they are simply acknowledging a job well done.

      when i was told my daughter had ds i really knew very little about ds and so until i did a bit of reading up on it my initial reaction was did i do something wrong while i was carrying her, and i would rack my brain trying to think what i did different this time than my prev 3 pregnancies, so without people congratulating me on a job well done these feelings of guilt would be instilled even more

      If parents feel grief its for the chiid they were expecting but didnt appear to get
      it does not mean we don’t want to celebrate the unexpected child we did get
      we just need time to adjust to the change of plan its the same as anything your not expecting to happen it temporarily knocks the wind out your sail, but it doesnt take long to get going again

      And just as all children with Down Syndrome are different
      All mummies initial feelings towards ds is different

      Reply

  3. Hospital personnel are sadly lacking in training in my experience. ” She might be cute anyway” , “She will always believe in Santa Claus and the Easter Bunny” etc. How about ” Congratulations, she is beautiful” because she is! Why not coo over her as you do over very other newborn. How about listening without judging. Bring a cute little gift as you would with any new baby. It is important that you celebrate this new birth with these new parents! These parents are fragile but love their new baby fiercely!

    Reply

  4. NO it is not. I can assure. The birth of a child is cause for celebration, if not at first, then later. We may not be ready for ‘congratulations’ now, but someday we will be very glad you said it.

    Reply

  5. One of the things that really bothers me is when people refer to my daughter as a Downs kid or Downs baby. She is a child first, who just so happens to have Down syndrome. I hear this quite often

    Reply

      1. I couldn’t agree more! I can’t stand for people to refer to my niece as a downs baby! She is our baby and acts just like any other 3 month old I have ever been around. Society needs to be better educated on the subject and those who aren’t should say nothing for fear of saying something totally ridiculous:) We don’t refer to people with diabetes as “that diabetic girl” so why would you call a kid a downs kid

        Reply

  6. When I first found out my baby has Down syndrome, I was extremely sad and appreciated people saying “I’m sorry”. They were showing understanding and compassion for my sadness and grief. What bothered me the most were all if the statements pointing out the positives. It took me a while to appreciate being positive!

    Reply

    1. Thank you for sharing this angle, Joyce. I know each of our journeys are different and unique, as are we. Although I appreciated hearing congrats instead of I’m sorry when Polly was born, I do remember being annoyed that everyone wanted to just point out the positives. I did need my grief process validated.

      I appreciate you pointing this out.

      Reply

      1. I guess the difference for me was finding out DURING my pregnancy. I felt the need for a pity party while I grieved. I was blessed that everyone knew before Leo was born so that once he arrived his birth was totally normal like my others. For someone who doesn’t know until birth, I can totally understand feeling the way you did. You’re right, you missed out on the joy and specialness you should have had during her birth. I am SO glad I knew ahead of time so I had a chance to process my feelings before he was born.

        Reply

      2. I think it’s the nurse in me that is trained to talk about the elephant in the room rather than avoid… because people usually want to talk about it and what hinders them is often feeling that the health professional (or friend – anyone!) is uncomfortable around the issue…. so that might be where I was coming from. But I’m sure if I was actually in the situation I’d also be cooing and cawwwing at the same time over the cute and precious little baby….

        Reply

    2. I so agree with this. Saying “I’m sorry” validated the grief I felt (FOR her, not because of her, I adored her from the first moment). If one more person told me how blessed I was I think I would gave thumped them. But also, I feel I DO have a “downs baby”. Downs will shake a lot if her life from probably her hair to her intellect. The thing for me is that being called a downs baby isn’t a stigma or a phrase holding judgement. She is what she is to me, but her life will be what we make it and help her achieve. My daughter is just ten weeks old, I adore her and am so proud of her already. I stopped crying at the 5 week mark and now just marvel at her gorgeousness every minute. She’s just a baby. My gorgeous downs baby daughter. Don’t hold language against anyone, I think so few of us have this experience, and so many of us feel differently, that knowing what to say us impossible and varies from parent to parent. The poor onlooker is unlikely to ever get it right. But congratulations is a no brainer – it’s a baby and all babies are delicious x

      Reply

  7. We purposely didn’t find out if our Downs baby was a boy or a girl because we wanted everyone’s first questiont to be “is it a she or a he?!” not “does she have Ds or not??”. We craved as much normalcy as possible even with the grief. And we certainly wanted as much/many contratulations as we have received when our other children were born.

    Reply

  8. I actually really liked when people said, “She does not look like she has Down syndrome.” I did not know what to say back, because she did, but I liked to hear that, because it affirmed to me that they saw Nichole and how beautiful she was rather than her diagnosis.
    I think it all comes with personality and perspective. Nonetheless, you have a great list here, because these are all pretty accurate echos of what many parents with kids with Ds would say.

    I love #7, someone actually said that to me, AND they also said they had it as a child and they grew out of it…seriously! Now it just makes me laugh!

    Reply

  9. I have one question, never to ask a mom, of a child with Down syndrome. If she is expecting, another child, don’t ask her if she’s going to take better care, of herself, this time.

    Reply

  10. Thank you for putting this out on the web. Someone I know recently had a baby who was diagnosed with Down’s, and I want to make sure that I am as supportive and kind as I can be. It is nice to know what not to say, I would hate to unknowingly be cause for pain or bad feelings for someone in that situation.

    Reply

  11. I always enjoy reading articles from other parents with children with Down syndrome. My son just turned 14! I remember his birth like it was yesterday. Everything you said hit home, I remember which friends were always there, through thick and thin, and were never too afraid to be there when we needed them. They just wanted to get to know my beautiful son and be in his life.

    Reply

  12. One of my special memories from after my daughter was born was attending a preschool function for my son, with newborn daughter (DS) in the baby bucket, and having one of the preschool moms look at her and say, “Oh, how wonderful! A little Downs baby!” in a completely joyous voice. I was totally gobsmacked at first, but it caused me to realize how much of the future was going to depend on my attitude, so that became a positive thinking mantra for me every time I would start to get bummed out about her delays or my fears.

    Reply
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  15. “God does not call the qualified but qualifies the called” sustained us often during the early days…..none of us are anything but ordinary/garden variety parents in an extra-ordinary birth. But He is faithful to send the grace, resources, love, support, networking, casseroles, diapers, car pooling, friends etc needed to walk this unique walk beside us each. I think all of the mamas above are correct.

    Post partum is a difficult complex physiological/emotional/spirtual/extrodinary time under ideal/perfect conditions! When we welcome a special needs baby often there are additional issues of prematurity,urgent surgical issues, milk pumping, d/c home without newborn…… to also accomadate. It often is an incredible alchemy of joy and sorrow! Friends and visitiors, hosptial staff who can validate, minister to the roller coaster of complex feelings…..are to be so treasured.

    The joy and confidence is that with the lovely tincture of time, we all fall head over heels in love, ad infinitum with this wee person, our son, our daughter……. “bone of our bone, flesh of our flesh” !!! This we can be assured of !!!

    Reply

  16. I think too it’s radically different to “prepare” post-natally with the baby tucked in your arms, seeing your husbands handsome eyes, your son’s gorgeous nose, your lips…………..and preparing pre-natally, with baby unseen tucked in your womb. Babies in our arms seem to melt hearts, melt our pain! A pilgramgege of preparing with required grief under different conditions…..
    xoxoxox

    Reply
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  20. I think #5 is interesting. I’ve been asked that question many times about my 5 yr old granddaughter and I can’t say I’ve been offended by it since I think the more people know, the more understanding they will have for her and for others who are challenged. However, after reading your list, it did make me think that’s a question I would never ask regarding a child without ds.

    Reply

    1. I love Number 5. The “high functioning/low functioning” dichotomy is one of my pet peeves. I feel they are asking “Well, you got a kid with DS but did you at least get the good kind?” I love the way this was phrased, that people shouldn’t be put into boxes of functionality.

      Reply

  21. Love this list, as well as the 10 things the teachers should know!! For me, #8 and #3 were a constant in my life!!! I think the fact that I was 37 (gasp!) and knew ahead of time showed me what those asking the questions might have done with my son’s diagnosis. I will never regret finding out ahead of time because my husband and I had time to adjust, research, and let our loved ones do the same. This made Christian’s arrival much easier on us.

    Reply
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  23. I can’t believe I used the phrase “Down’s baby” in my post back in 2012! That is not right at all! As I nurse I know that!! Thanks to those who pointed it out, and I’m sorry.

    Reply
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  27. Our pediatrician is an old dude. (mid-seventies?) He said “I’m so sorry” with a sad crumpled up face when we told him our new baby had been diagnosed with Down syndrome. On the other hand, our (wise old lady) Waldorf preschool teacher, clapped her hands together and clasped them to her chest and grinned so huge, like a person who’d just been told she’d won the lottery(!) – SHE knew we’d been Blessed. I thought she had gone slightly mad, lol, but she has taught and adored several children with Down syndrome over the years and she honestly thinks we’ve been blessed, and it showed when she learned our news. I like to give her reaction more weight in my moments of contemplation than that of our Pediatricians. I love discovering that she was right. i think about her reaction a lot, actually. And I quickly forgave the old dude Ped, he just doesn’t know. But words resonate, and I probably will never forget how he reacted, how she reacted, how my parents reacted, how my in-laws reacted, how my best friend reacted…I guess if it takes an internet post to “teach” people who think they care about you, how to ACT with care??? Then I guess that’s a start. Thanks for posting!

    Reply
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