Part of sharing the news is that you then have to deal with comments from the people you know. Most people mean well, but sometimes things sound “off” to an expectant parent. Sometimes people say things that might make you feel uncomfortable. Then, you often need to decide whether respond or not. You might also end up wishing you had said something differently. Some experienced parents below share their insights about useful strategies, some of the best responses they used, and how those responses helped their state of mind.
Many expectant parents also become very sensitive to words they hear, including slang such as the use of the R-word (“retarded”). Many parents are hurt and unsure of how to handle this. If they confront their loved ones, things can get very awkward. If they say nothing, they may feel disappointed in themselves for not sticking up for their child. This is new social territory for you, and it can be very confusing.
We also have a booklet for your loved ones, “Your Loved One Is Having a Baby with Down Syndrome,” that can help friends and family understand the diagnosis better and can help them learn some ideas for supporting you. You can download if for free or order a copy from Woodbine House.”
See also: Sharing the News with Friends and Family chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Sample Hurtful Language Email
In our book, we also discuss creating an e-mail for your loved ones to address their use of slang in a proactive but gentle way. We have created a sample e-mail below, but yours may vary greatly from this based on your circumstances. You may copy this and alter it to suit your needs or create your own unique message.
Dear Friends and Family:
We have shared with you that our unborn baby GIRL or BOY NAME has Down syndrome, and although we are still anxious, we love our baby GIRL or BOY, and hope you all will welcome HIM or HER.
We have been through some emotional ups and downs, and have found that we are much more sensitive to the words those around us are saying. There are comments about “the short bus” or special ed that are bantered about teasingly that are starting to sting, and the slang use of the “R-word” (retarded) that is causing us some pain. As we look back, we realize (with some embarrassment and regret) that these are things we have said in the past. If we had only known the impact, we definitely would have eliminated these things from our vocabulary.
As we move forward in our plan to raise a child with an intellectual disability, one of the things that worries us is the way society looks at people with cognitive challenges. Although the phrase “mentally retarded” is something used less and less frequently by doctors, it is still in use in some clinical and legal contexts. It is also one of the phrases that comes to peoples’ minds when they hear the diagnosis of Down syndrome. Finally, this is still a word that is directed at people with cognitive challenges as an insult. Therefore, even though people using the R-word in slang “don’t mean it that way,” we do hear it that way and believe that our SON or DAUGHTER will hear it that way as well.
If your children hear this word in your home, they will use it as well, and will of course use it around our family. We are nervous about this possibility.
For all of these reasons, we are asking you to join us in our journey towards kinder vocabulary by eliminating the use of the R-word in your home. We know it’s hard to break old habits, but it would mean so much to us. We are including a link to the Special Olympics website which has more information, and you can even take a pledge to show your support.
Thank you all so much.
Love to all,
Some expectant parents opt to use social media to share messages in a general way about helpful/hurtful language. Some resources/articles expectant parents have found useful to share include the following:
10 Things You Should Never Say to a Mother of a Child with Down Syndrome by Naomi Williamson
5 Compliments You Need to Stop Giving About Children with Down Syndrome by Lexi Magnusson
The Special Olympic’s Spread the Word to End the Word campaign to encourage people to stop using the r-word.
Kathy Snow’s “People First Language Article” is one of the key articles that launched the “people first” language movement. This movement is where people are encouraged to say “person with Down syndrome” instead of “Down’s baby” — effectively putting the person before the diagnosis.
Reflections from other parents about dealing with comments and hurtful language:
From Amy, sharing what bothered her and she dealt with it after receiving a prenatal diagnosis:
Comments I hated the most once we had our prenatal diagnosis (and how I interpreted them):
- I am so sorry. (I don’t want or need your pity right now.)
- No-one could be a better parent for a child like this than you. (Oh, so I’m somehow better equipped than anyone else on the planet to deal with this … maybe what you’re really saying is that you’re glad it’s not you)
- You’re so brave — I don’t think I could have made the same decision. (Did anyone ask you what you would have done? Until you’ve been in my situation, don’t presume to know what you would have done, and even if you think you do know, I don’t need to hear it. It has nothing to do with me and my family)
- Well, maybe she won’t have a very severe case. (Oh boy, you don’t know what you’re talking about. Either you have DS or you don’t – are there differences in cognitive abilities? Sure, but I’ve just had every expectation I had for this pregnancy dashed. Don’t give me more things to hope for, only to have them proved wrong. It’s time for me – and everyone else – to get with the program and love this baby for who she is, not who she hopefully won’t be.)
How I dealt with comments (not saying these are all recommendations):
- I tried to be forthright with the information about our daughter’s diagnosis and radiate a sense of calmness and positivity, hoping it would rub off on people. That was really hard at the time and took a lot of emotional energy which I couldn’t spare. Still, most people stopped telling me they were sorry when they realized I wasn’t going to indulge their own sense of morbidity.
- I steamed a lot in private and started avoiding people who had said the “wrong” thing to me. I think that this kind of situation does tend to let you know who’s really on your side and who’s more driven by the shock and pity factor, so maybe I would have drifted away from these friends anyway, regardless of our prenatal diagnosis of Down syndrome. However, see number 3 for a better way to handle this sense of disconnect from those you love.
- Looking back on it 7 years later, I could have helped those friends along by writing a mass email explaining the diagnosis and telling people what things were helpful to say and do and what weren’t, to give them all the benefit of the doubt. I must admit, part of me wanted to “test” people at the time to see if they were really, truly there for us, but that’s not the best way to handle a friendship.
From Heather, explaining that she felt comforted when people grieved with her:
Unlike many expectant parents, I wasn’t so offended by “I’m sorry” because I was surely feeling quite sorry for myself, and I really, really needed to know that my thoughts and feelings were being heard. The comments that meant the most to me were the comments unmade: people who just shut up and listened to me no matter how upside down it may have sounded.
That’s what I wish my sister-in-law had thought of before she opened her mouth. She had heard of our unborn baby’s diagnosis from her husband (my husband’s brother), and a few weeks had gone by. When we met up the conversation went like this:
Sister-in-law: Hey, I’ve been thinking. You know, I think you really are the perfect person to be this new baby’s mom
Me: Really…why do you think that?
Sister-in-law [in her usual chipper, look-on-the-bright-side style]: Well, just think. You’ve had so much surgery yourself so you really know your way around hospitals and doctors. And with all you’ve been through with your mom [who had bi-polar disorder all her life], you understand so much about disabilities. You’re just the perfect person! [ending in bright, happy smile]
Me: Yeah, and it was so much “fun” the first time around I can’t wait to do it again.
I couldn’t have been more annoyed. That and the “Oh, they’re such sweet children!” and “God only gives special kids to special parents” comments. These comments and the exchange with my sister-in-law only serve to make the other person feel better or at the least to get me to cheer up so they could feel better.
All people have to do is listen. Don’t try to fix it, just listen.
From Rachel, describing how she felt sensitive at first and then tried to gently help people learn:
I was sensitive to comments when my son was born, and shortly afterwards. I’m glad, though, that I realized pretty quickly that most people were trying to say the right thing, and “the right thing” would have been hard for me to know, let alone anyone else. People were pretty interested in my first response to their comment, so I tried to think before I responded with my first reaction.
Often people are curious. Many people don’t know anyone with Down syndrome very well, and if we’re tolerant of their first conversational foray (not usually very adept), we can get a chance to answer a question or help, perhaps, to change a point of view. If I get annoyed right off the bat, I lose the opportunity. That happened sometimes, and that’s okay, but I’m happier about the times I took a deep breath, and either smiled when I didn’t have much time, explained when I did, and when I was feeling especially brave, or knew the person rather well, told someone afterwards that they probably shouldn’t say what they did to the next parent they meet, and what they could say instead.
For me, “How are you doing?” or “How is he doing?” are things I was happy to hear from friends and family. That way, if I was having a problem, they knew what it was, and if I was having a great day, I didn’t get a sympathetic comment that would have tarnished it. My favorite comment from strangers is usually a sincere compliment on whatever my son is doing, or if he’s, for example, yelling just as we’re about to finish in the checkout line, and I’m getting tense, “Mine do/did the same thing.”
From Megan, sharing the best and worst comments, how she actually responded, and how she wished she would have responded with humor:
Worst comment in my mind: “I’ll pray the doctor is wrong.”
What I said: “Well, they’ve seen her chromosomes, and she does have three copies of the 21st, not two copies, which means she does in fact have Down syndrome.”
What I should have added: “I’d rather that you didn’t pray for my doctor to be unable to count to three.”
Least favorite comment #2: “You’re so well equipped!” (I teach Special Education.)
What I did: Just sat there.
What I should have said: “Yes, I see how fourth and sixth grade mathematics skills will really benefit my infant!”
Best comment when I was relating the above to a friend, who has an infant (typically developing): “Well, sure, teaching special ed makes you ready to raise an infant with a disability if being a teacher prepares you to be the parent of an infant!” (I love this friend.)
From Yvonne, telling about an experience that could have been awkward but was handled with patience and calm:
I’d like to add an experience that happened a little farther out in time, when our son Larkin was about 18 months old.
My husband and I were in line at the grocery, talking to the woman who was checking us out. Larkin was sitting in the cart just smiling and babbling away. She and I got to talking about our children and pregnancy in later years. She remarked that her pregnancy in her 30’s was harder on her, and that with advanced maternal age you had to be so careful about your health and “watch out for that Down Syndrome.” My husband and I both smiled big and said almost in unison, “Oh, he has Down Syndrome.” The lady replied by cooing at Larkin and saying “You sure can’t tell it, not from looking at him…” and I do believe you could have heard a pin drop for about 2 aisles either way during this exchange. My husband and I grinned and just said a few things about how absolutely wonderful Larkin is and how kooky we are about him, and went on our way.
I am happy to report this incident didn’t bother us in the least.
It made me think about how, at first, I was somewhat uncomfortable talking about Down syndrome, or when people made remarks about it that I felt I needed to “correct.” I didn’t feel upset by his diagnosis, but it could be hard to know what to say to people in a way that didn’t feel awkward. I guess practice makes perfect! There was a time I would have felt awkward and struggled with what to say or do that would seem appropriate. I think about it and smile today because it just seemed effortless. It also reminded me what a great husband I have. Anyway, I just wanted to share, with those of you who have “been there, done that” and understand, and for those who are still in the “awkward” phase, because I do believe it gets better.
From Tracy, listing the comments that frustrated her, how she dealt with them, and comments that she found helpful:
Comments I received:
- You know I had a dream that this “happened” to you.
- The minute I found out your were pregnant – I knew your baby was going to have Down Syndrome
- You know “they” can get jobs, “they” can go to school, “they” can ride bikes–this was all from my mom!
- I am sorry – this must be tough.
Ways I dealt with it all:
Positivity! Friends with this experience – and simply just smiled a waved!
The one thing I heard that was amazing:
Congratulations! You are having a baby!!
From Jess, sharing the frustrating comments people said about testing and “fixing” her son but her desire to keep the lines of communication open for sincere questions:
In the early days, I heard over and over again how “these tests are always wrong.” I am a nurse, and these comments always came from people who were completely ignorant of anything medical. I got so tired of hearing this, and trying to explain to everybody why I was sure the tests were not wrong. I was always nice about it, but I finally said that I didn’t need for all the tests to be wrong and had accepted we were having a child with Down Syndrome.
Then there was the guy who kept inviting me to come to healing services at his church, and all the people who kept saying “Maybe you will get a miracle.” I told those people that God creates people with Down Syndrome too, and my baby will be exactly as she was intended to be. She didn’t need to be “fixed.” I had a lot of questions about level of function (while I was pregnant!) and many shortly after I had her.
Although these have annoyed me too, I want to keep open communication with my friends who don’t mean any harm. They are just curious. And I figure if they feel comfortable asking these questions, I am able to share what I know about Down Syndrome. I would rather have somebody ask a “wrong” question than feel like they can’t ask their questions at all.