Mom’s Plea On How To Talk About Kids With Down Syndrome Goes Viral
by Caroline Boudet
Caroline Boudet, the mother of a 4-month-old baby with Down Syndrome, posted on Facebook what others should—and should not—say to parents of children with the genetic disorder.
After returning from a medical appointment for her 4-month-old baby, Louise, at which a doctor said, “It’s a little Down’s baby,” mother Caroline Boudet wrote a heartfelt Facebook post about what she wishes people would say—and not say—to parents whose children have Down Syndrome.
Although the 36-year-old mom, who lives in a suburb of Paris, hears offensive comments about her daughter all the time, the doctor’s comments earlier this week pushed her over the edge. As a journalist, Boudet finds writing makes her feel better, so she wrote a Facebook post that she shared publicly, hoping that maybe some friends would share it and that it would inspire people to think more about what they say.
Originally written in French, the message said:
[WORDS MATTER] Here is my baby girl, Louise. She is 4 months old, has two legs two arms, and one extra chromosome. Please, when you meet a Louise, do not ask her mother, “How come you did not find out during the pregnancy?” Either they did, and the parents took the decision to keep the baby. Or they didn’t, and it was surprising enough for them, to talk about it over and over now. Keep in your mind that mothers have a tendency to feel guilty about each and every thing, so a surprising extra chromosome… I let you guess. Don’t tell her mother, “It’s your baby no matter what.” No. It’s my baby, period. Plus: “nomatterwhat” is quite an ugly name, I’d rather call her Louise. Don’t tell her mother, “As she is a Down’s baby, she will… etc.” No. She is a 4-month-old baby who happens to have Down Syndrome. It’s not what she IS, it’s what she HAS. You wouldn’t say “she’s a cancer baby.” Don’t say, “They’re like this, they’re like that.” “They” all have their features, their character, their own tastes, their life. “They” are as different between them as you are from your neighbor. I know that if one does not experience it, one does not think about it but words do matter. They can comfort and they can hurt. So just give it a thought, especially if you’re a doctor or nurse of any kind. I usually do not make my status “public” on Facebook, but this one will be. You can read it and share it as you want. Because each year there are (in France) 500 new “mothers of Louise” that can have a day ruined by those kind of words. I know it’s not meant to hurt. But you just need to know.
The sincere post has since gone viral, getting almost 28,000 likes and 35,000 shares on Facebook, being read from France to the U.S., Canada, Korea, and beyond. Boudet says she has received hundreds of messages from parents as well as from doctors and nurses who admit to not always saying the right things.
“One doctor said ‘you’re right, next time I will think about it,'” she told Yahoo Parenting. “That was really moving to me because doctors sometimes think they are talking to other doctors, but we’re not. This is not just any patient and any case. This is our kid.”
Boudet acknowledges that before her daughter was born, she may have been one of the unthinking people who made insensitive comments about kids with Down Syndrome. She says she knows that even good, well-meaning people sometimes say the wrong things, but she hopes her Facebook post will help people understand what words are harmful.
It can be difficult to know what to say to parents of a child with a special condition or who has issues, but based on the response to Boudet’s post, it seems like most people would really like to know what we can say or do to help.