What to Say to the Parents of a Baby With Down Syndrome: Dos and Don’ts

February 14, 2012 · 35 comments

in The Boy & Down Syndrome

baby-with-Down-syndrome

Most of the emails I receive from readers relate to specific posts I’ve written, or are inquiries into treatments that Sarah Kate has received. Others, however, are from caring friends and family members of parents who’ve received a diagnosis of Down syndrome for their baby.

I’m always touched by these emails, because they show me that these people care and want to do the right thing. So with those people in mind, I’m covering the “dos and don’ts” of talking to the parents of a new baby with Down syndrome.

Do acknowledge that their dreams will be different now.

The highs will be higher and the lows will be lower. Mom and dad will be worried that they aren’t up to the challenge of raising a child with special needs. Cite specific character traits that they possess that are well-suited to the challenges ahead.

Don’t speak in clichés.

If I had a dollar for every person that said “God only gives special children to special people” to Mr. Andi and me after Nathan was born, I could pay for all of Sarah Kate’s therapy for a year. It’s well-meaning, but after you’ve heard it for the 100th time in three days, it rings hollow, and as much as you want to believe it, you know it’s not true.

When you’re a parent of a new baby with Down syndrome, “special” sounds a little like a euphemism for “weird and different” and I’m pretty sure the last thing you want to be telling the parents is that they or their newborn is weird.

Do rise above any fears you may have and be the individual who embraces the child from Day One.

And by embrace, I mean figuratively AND literally – holding a newborn is one of the great joys in life, and babies with Down syndrome are often extra-snuggly. :) Some people will be able to do this naturally, while others may have to work at it.

An out-of-state friend of mine didn’t meet Nathan until he was nine months old, and he admitted to me after the fact that he was apprehensive about it. He pushed through his fears to embrace Nathan, and quickly discovered that there was nothing to fear. Nathan will be serving as his ringbearer when he marries my friend Katie this fall. :)

Don’t ignore the diagnosis.

Although the “special” comment drove me batty, it also made me a little nuts when visitors arrived bearing cards and gifts with celebratory sentiments and never mentioned anything about the Down syndrome. I didn’t want anyone feeling sorry for us, and I did believe that Nathan’s birth should be celebrated, but when people avoided talking about it altogether it made me feel alone and isolated.

I realize now that people elected to be cautious so as not to say the wrong thing, and while I certainly didn’t expect every person that visited to act as my personal therapist, it bugged me that people ignored it altogether.

Do ask the parents how they’re feeling and how you can help them.

Having a new baby is overwhelming, even when the baby is typical and healthy (at least that’s what I’ve been told :)). Babies with Down syndrome often have health problems at birth, so the parents may need a little extra help with meals, care for their other children, or getting the word out to their other friends and acquaintances.

Don’t allow yourself to believe or communicate in any way that the child is “lesser.”

One of the phrases I’ve heard over and over through the years – following my miscarriage, the stillbirth, and Sarah Kate’s premature birth, though ironically not with Nathan – is “You can try again.” Sure, the parents are probably disappointed – maybe even devastated – by the diagnosis. But even though their feelings about their child may be complex, he’s still their child that they love. Indicating that the child is replaceable or “less than” will drive a wedge between you and the parents.

parents-of-newborn-baby-with-down-syndrome

Do take your cues from the parents.

They may be grieving, happy, resolute, or (most likely) all three and more. Down syndrome is a challenge, and they know it, but it isn’t a tragedy and shouldn’t be treated as such. They will find comfort in your support of their grief, joy in your celebration of their child, and strength in your encouragement. Be the person who recognizes their needs and responds accordingly.

When Nathan was born, we knew in our heads that people cared about us and wanted do and say the right thing, but it was hard to feel it in our hearts. The people who reached out with a personal response are the ones that I’ll always appreciate and cherish – Nathan’s birth cemented some relationships that I already had, and elevated acquaintances to lifelong friends.

Though your loved ones may have dark days in the beginning, they’ll pass quickly, and they’ll be back to their old selves with a new blessing to share with you. Rise to the challenge and be the person that your friend or family member will always remember.

You won’t regret it.

Update (2/15/12): Commenter Lisa let me know that DownSyndromePregnancy.org has a new booklet, “Your Loved One is Having a Baby With Down Syndrome,” available for free download. I was unaware of the booklet when I wrote this post, but Lisa suggested that the two complement each other. You can download it here.

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Anna Theurer February 14, 2012 at 1:48 pm

Andi, excellent post! My favorites are: “Downs babies are so cute” and ” you can always get that surgery to correct their eyes”. Really?!?!

Andi February 14, 2012 at 3:38 pm

Okay, that’s a new one on me. Never heard that one about the eyes! Of course, Nathan has clinically large eyes (really, he does – it’s called “megalocornea” and I think it’s hereditary), so maybe that’s why we never heard that one.

Julie February 20, 2012 at 8:45 am

The comment I disliked when my son was born “It could of been a lot worse.” I really think people meant well it is just hard to hear right after you have a baby and you were expecting everything to be okay. I wouldn’t trade him for the world and I am glad we were blessed with him.

Barbara February 14, 2012 at 8:30 pm

I believe people do the best they can with what they know. This is an excellent set of recommendations but how to get this kind of social teaching into the general public? I wonder if someone big like Easter Seals has an educational campaign like this? There are so fewer persons w/ Ds in our country now, compared to the past. The need for people to have these social skills has changed dramatically.

Andi February 15, 2012 at 8:46 am

So true, Barbara! Most people want to do/say the right thing – they just don’t know what that is when they’re venturing into foreign territory, and the parents often aren’t in the position emotionally to be able to express how they feel.

As for getting this information out to the general public – I have no idea how best to do it. I’m working on it with this blog, but of course my circle of influence is small.

Diana February 21, 2012 at 6:29 am

Why not print this for friends that know they are having a child with Down’s Syndrome? It may be a new diagnosis for them and their friends. They can share the article with visitors. Most people do not mean to be malicious with their comments, they just want to be there and end up saying the wrong thing. Education is the best ally.

Lisa Lilienthal February 15, 2012 at 12:50 pm

Andi – maybe you were prompted to write this by the new booklet that Down Syndrome Pregnancy published this week? It’s definitely worth a mention! It’s for friends and family with a loved one who is expecting a baby with Ds, and it is a free download at http://www.downsyndromepregnancy.org. It is a great complement to the good advice you have provided above.

Andi February 15, 2012 at 7:30 pm

Ha! No, Lisa, I had no idea. I’ve actually had this post in the idea queue for a couple of months and just got around to writing it this week.

Caroline Playle February 19, 2012 at 10:59 am

My BiGGEST hate is when people say ‘they’re so loving’. Children and adults with Down’s Syndrome have likes and dislikes and personality traits that make them individuals just like anyone. drives me insane that people think they are all one and the same…..you wouldn’t get away with saying all people with red hair are hot tempered…

Andi February 20, 2012 at 8:22 pm

Great point about the red hair! I was a bottle redhead for awhile when I was younger and one thing that surprised me was how people (strangers) treated me. Apparently, the stereotype of the hotheaded redhead was alive and well – people took me more seriously and steered clear of confronting me more so than when I was a blonde.

lomagirl February 20, 2012 at 10:16 pm

I’m a real red head and didn’t notice people steering clear of confrontational, but then I used to have a temper when I was a kid- not so much now, but I don’t get trampled on.
Thanks for the post. It is difficult to know what to say to someone who has just had a Downs Syndrome or other special need baby, because as you said, you want to celebrate but also acknowledge that “dreams are different now.”

Bronwyn February 22, 2013 at 12:14 am

Must admit this one drives me nuts just as much as the “special” people comments. My little man with the extra cuteness gene is only going on 3 but he has a temper and an attitude that rivals his other 3 brothers. He can be very loving when it suits him but in reality he is no different to his brothers when it comes to this side of things.
Great article and your little man is so gorgeous :)

Leigh February 19, 2012 at 1:55 pm

Loved this! I just wrote a similar post in theme this morning about what not to say to parents of autistic kids. I linked to yours from mine. Very nice post.

Anne-marie Bretzin February 19, 2012 at 2:05 pm

This post is so beautiful!! I parent a child with Asperger Syndrome, ADHD & GAD. Thanks for pointing out that we’re all people and we all have needs. :)

Dianece February 19, 2012 at 9:12 pm

I, as a grandparent of a beautiful, intelligent, loving little boy who happens to have autism, find myself having to explain his ‘unorthodox’ behavior at times when we are out with him in public and something triggers his ‘meltdown.’ I hate having to ‘label’ him…after all, he looks perfectly normal, except that he is almost 4 and hardly talks at all. Before he came along, I thought all those parents with ‘unruly’ kids just didn’t try to control them and their behavior, and judged them for it accordingly. I am truly sorry for my shortsightedness, for you, too, may have been dealing with autism in your own, usually helpless, way.

Gwendolyn February 20, 2012 at 7:27 am

I also have two children with special needs. A 19 year old son with Down syndrome, and a 17 year old son with cerebral palsy. Also several pregnancy losses.
People do say ridiculous things, but usually with some positive intent. I try to put on my teacher hat in these situations. But my main concern is what my children hear from me. Actually,
that is I that is my only concern.

Donna February 20, 2012 at 10:49 am

Love this! My Hannah is now 14 so it’s been a while since we walked this path, but your post made me reminisce about the times following her birth. The one thing I remember too is how I know it was so difficult for my husband and I to process all the news, but it was also difficult for those who loved the two of us and this new baby we’d just been given! Those who love us do the best they can at finding those well meaning comfort words and we shouldn’t lose sight of that in all the difficulty of diagnosis news. Love your writings!

Andi February 20, 2012 at 8:24 pm

Gwendolyn and Donna – very true. Most people mean well, which is why I found it hard to judge, but at the same time you are dealing with so many emotions that all you want is someone to reach out to you. Which, of course, is exactly why I wrote this post…so that others would know how best to help their friend or loved one.

Aaron February 21, 2012 at 9:06 am

DO: Say Congratulations. As a father who found out prenatally and reached out to a wonderful community, the best thing that I could hear was congratulations. I was still having a baby, and when she was born that’s all she was. A beautiful daughter full of love. The don’t list can be very long but I found tears and joy when i heard congratulations. We had heard all of the sorry’s and it will be ok’s but congratulations brought my spirits high. My daughter now 2 has had 7 eye surgeries and heart surgery for a VSD. She is healthy and gives our 4 year old son all he can handle. Lets see how many more Do’s we can list :)

Miranda February 21, 2012 at 12:58 pm

Very good written! My DS daughter just turned four and I think that it would have been helpful when everyone in our environment would have read and used these do’s and don’ts

I just wanted to say that I think that the picture of your baby as a newborn is just só cute! somehow you can just see how she is looking with expectation! I love the picture!

Miren March 21, 2012 at 9:25 pm

Hi,

It is the first time that I read your blog and I have to say that the picture of Nathan just a few hours old is beyond gorgeous, HE is, I hope you squeeze those cheeks tons, sooo yummmy! Also you have talent for photography!
Thanks for your abundance of love!
Miren

Katie September 22, 2013 at 12:38 pm

Ah so sweet isn’t he cute I can’t wait to read the whole blog again!

Adriel @ the Memos March 27, 2012 at 8:13 am

I love this post, really. Such an important topic that so many people are afraid to broach, or that want to but don’t have the authority/experience. Thank you for your insight.

Gosh, reading that back it almost sounds like a canned spammer comment, but I actually mean it Andi! (I’ll put your name in there just so you know it’s not spam.)

Thanks again.
adriel :)

Lynette May 17, 2012 at 5:55 pm

My son is 12 years old now and I got upset by comments about how happy these kids were, and how special, and how God only gives these children blah blah! I do see that people just say something to try and give comfort – it is hard to know what to say and I am sure I would have been a offender of all the rules if this had happened to someone I knew instead of me!

I would just like to add though, when I look back it was those who acknowledged my grief but still treated Daniel like the new born baby he was and commented special features about HIM – not his Down syndrome – like the would with any baby ie oh look at all his gorgeous hair and things like that like you do when you first meet a new baby. Also I found that no one asked about my labour everyone was too distracted by the diagnoses to remember I had had a labour so no one asked anything about it, which is usually a fairly common part of things when you have a new baby. So I would say that you should think about what you would usually ask or say if the diagnosis wasn’t there and a lovely new baby was born – just remember it is a baby first and foremost. Celebrate the baby’s birth!

Andi May 18, 2012 at 12:37 pm

Interesting point about how you say no one asked about your labor, though that’s typical. I never had a “typical” labor – Sarah Kate was 10 weeks early – so I didn’t know that people did that! :)

Katie September 22, 2013 at 12:43 pm

Cute I can’t wait to see my Down syndrome girl or boy cousin

Keri June 23, 2012 at 9:14 am

Love this post. After going through this very recently, I’d say that my friends who actually reached out and talked to other parents with older kids who had DS for their advise on what to say to us and/or reached out to the local DS guild helped me the most b/c it meant so much that they went out of their way to learn more about DS and raising a child with DS before talking with us.

Bridget July 19, 2013 at 1:03 pm

Loved this post. I don’t have a child with DS but I do have a child with a rare skin disorder (1in500000) which we did not know about til birth. I’ve just discovered all these amazing special needs blogs including your beautiful written one. I am starting to write about our life because our son will be growing up with a visual difference/ disability and I want to create awareness so that maybe when we are out in public people won’t say rude comments and will have a deeper understanding of what’s going on. I so wish I had read this post after I had my son or found this blogging world. Sometime its hard to be around people who have all typical kids and never have any challenges. Im just in awe of your blog.
Thanks for writing.
Bridget
If you read my birth story you’ll have an idea.
http://www.millionotherthings.blogspot

Andi July 19, 2013 at 1:17 pm

Hi, Bridget! Thanks so much for commenting and for your kind words. This post is one of my all-time most read, and I think it’s for the reasons you cited: it strikes a chord with people who have children with special needs, not just those with children who have Down syndrome.

Thanks for visiting! I’ll spend some time on your blog later today.

Barbara September 27, 2013 at 11:51 am

I really know how you feel. We have a retarded daughter and also lost a baby Grandson. I found that you have to take every comment as it is given. Try not to over think it. In 50 years I have heard it all. I relie on and take comfort from my love ones. We love and care for my daughter and she is love and cared for by all the important people in our lives. Take heart and look to each other and those who really make you feel good and lift you up. God Bless

Debby Eisinger October 15, 2013 at 1:36 pm

Our son, Todd, is 31 and started Inspires 2 Aspire in 2009 with a congratulatory birth card for someone who might have a baby with a disability and friends were “at a loss for words”. Since then his inspirational greeting cards have grown to 9 cards and you can check them out at http://www.inspires2aspire.com. Enjoyed your post!

Mandy January 19, 2014 at 8:19 am

Andi,
Thank you for the words of advice. Friends of ours just had their second child two days ago. He was born about a month early and with Down syndrome. They had no idea this was coming so obviously neither did we. I was struggling to find the right combination of support and encouragement after we heard the news. The last thing my husband and I want to do it upset the new parents but we weren’t sure what was ok to say. I will admit I was guilty of the “God gives special people to special people” comment but I truly do believe it. After reading everyone’s comments, I now see how cliche it sounds. I want to be there for my friend….I don’t want to treat her or her child any differently than in the past. I realize some things will change but after reading this post and these comments I feel more equipped in what to do and say. Any extra advice is greatly appreciated!
Mandy

Andi January 19, 2014 at 3:00 pm

Hi, Mandy! I’m happy to hear that this post was helpful to you. Don’t worry about saying the “wrong” thing – the most important thing is that they know you care and are interested in their child. I’m absolutely certain that your caring heart will shine through in whatever you say.

Tara January 19, 2014 at 2:26 pm

For me, the ONLY wrong thing is the R-Word. I smile, joke or nod at every thing else as I’m a big believer in free speech. There is a excellent post explaining why we should lighten up and not tell parents of “typical” children to say. Its hard enough to talk to parents of kids with SN, lets NOT make it even more so.

Here’s the link- http://travelswithtessie-toodles.blogspot.co.uk/2013/12/what-not-to-say-to-parent-of-child-with.html. Most people aren’t trying to be offensive but they are trying to be kind. I honestly think that people are saying them to you in an attempt to make you feel better NOT worse. The quicker you realise that, the better. When Amelia was in the NICU, I told everyone my only rule was that they were NOT allowed to utter the R-word in the awful context.

Everything else was allowable. I didnt want to make it hard for everyone and said so.

Andi January 19, 2014 at 2:58 pm

Excellent points, Tara, but my experience has been that many loving, caring, kind friends and family members want to know what they should say to the parents. This post began with my sharing how often I am asked “what should I say” – given that this post is almost two years old and remains one of my top all-time posts, I believe that the information provided fills a need. Many people find this post because they have googled “what to say to someone who had a down syndrome baby” (or something similar to it). I agree that we should make it easier for people to talk to parents of children with special needs, and this post was written for those people who are looking for the best way to go about it.

I agree with you that the R-word is a no-no, but… your assertion that most people are trying to be kind applies even to people who use that word. Many of them just don’t know any better, so by your logic, it seems we shouldn’t draw a line there, either.

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