Mum Shares The Frustrating Things People Say About Her Down’s Syndrome Daughter

Raising a child with Down’s syndrome can be a daunting experience – as mum Caroline Boudet has discovered in the four months since her daughter Louise, who has the genetic condition, was born.

And not because of anything to do with Louise herself, but because of all of the insensitive questions and comments she’s been faced with.   

So Boudet, from Alencon, France, decided to use her Facebook page to educate the world about what NOT to say to the parents of a child with Down’s syndrome.

She posted the following message to her page:

“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’ll let you make up your mind.

Don’t tell her mother, “it’s you 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 a Down baby, she will… etc.” No. She is a 4-months-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 you 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.”

Since posting the remarks this week, Boudet says she’s been blown away by the positive feedback – and has been inspired by the stories that other Facebook users with relatives with Down’s syndrome have shared.

Diane Lord commented, “I have 30-year-old son with Down syndrome. I understand you so much. I spread this kind of message for 30 years and unfortunately, I think they will do it for centuries and centuries, but it is important not to stop writing these messages. One day, maybe, people will understand better what we live. My son Jean Robert Boucher is wonderful, sociable, tender, full of life and full of talent. We wouldn’t swap him for anything in the world.”

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