11 Things Not to Say to the Parent of a Child With Down Syndrome
1. Didn’t you have the test?
Not that it’s any of your business but if you must know, no I didn’t! And my reason for that is because prenatal testing would not show me how freakin’ awesome she would be, it wouldn’t tell me how smart she would be, how quickly she will learn things nor how she will sit on the couch and laugh at the funny things in Peppa Pig before she’s 2.
This girl loves and knows love, again not testable and it definitely wouldn’t tell me how she would complete our family. It wouldn’t tell me how she will light up a room every time she walks in, how strong and independent she will be or how much she would add to society.
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Yeah you read that right, my child with Down syndrome contributes to society! In a world where it’s hard to get a smile out of a stranger let alone a hello, this girl works a crowd like no one I’ve ever met and she’s not even 2 (maybe a political career is in her sights).
There’s a whole shopping center of people who go home with a warm glow in their heart because Eden took the time to point them out, wave, say hello and smile at them like no one ever has before. You can’t buy that kind of affirmation.
2. So how high functioning will she be?
OK, I know you mean well by this, but to be honest it’s a little frustrating. The equivalent is me asking you, “So how smart will your kid be?”
Down syndrome is not “on the spectrum.” You cannot have a percentage of it, or only a little bit; there is no grading! You either have an extra copy of the 21st chromosome or you don’t. As with a typical child they all have varying degrees of intelligence, a child with Down syndrome is no different.
Just as your child will be the best they can be through a good education, extracurricular activities (for better life skills) and with you problem solving any barriers they face. Through early intervention, different therapies, good nutrition and a whole lot of love, Eden will be the best she can be…
My response to this one now is always, “Define high functioning.”
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3. You know it’s part of her “syndrome.”
There are over 120 characteristics for Down syndrome and any given individual will have at best 6 or 7. There is only 1 characteristic that correlates for all individuals with DS and that is intellectual impairment.
So when you try to tell me my child will be stubborn, a poor listener, die young or contract one or many life-threatening illnesses because its part of her syndrome, understand that I will internalize a massive face-palm before turning and walking away.
4. She’ll be able to work in a sheltered workshop…
Really, haven’t we come further than this? I think the term you may be looking for is “Supported Employment.” I have three friends who work in supported employment and they love their jobs; it’s a complete fit for them. I also live in a community where people with Down syndrome work in typical employment. Either way what’s the big deal? But I’m pretty sure we don’t need to surmise our kid’s occupation before they even start school, let alone when this was said to me at diagnosis.
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5. You know she’ll never get married!
Is that really what you think? And if so, you really shouldn’t have verbalized it. Eden may get married, she may not and it would be the same if she didn’t have Down syndrome.
Eden will live a full life, she will go to school she will gain employment and, much to her father’s horror, she will have boyfriends. Who knows what will happen after that? What I do know is that society is changing and there are wonderful people all over the world with different abilities getting married. At the end of the day it’s her choice, not yours.
6. At least she’ll always be happy.
This is another face-palm one… People with Down syndrome experience an array of emotions just like their typical peers. Eden cries, gets cranky, gets frustrated, gets tired, gets emotional and she also is at times happy.
I think what you’re trying to say is that her happy is so expressive. Compared to some of her friends, Eden’s happy is a whole body thing; when she’s happy, it spills out of her very being and is highly contagious.
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7. What’s wrong with her?
Sometimes you just have to laugh and that’s exactly what I did after hearing this statement. This was yelled at me by the shop assistant from across the store, a good 10 meters away so that everyone in the store would turn and stare.
It was while Eden still had a nasal gastric tube and while I believe this comment was aimed at the tube and not at her diagnosis, it wasn’t the politest way to ask. As I got closer, I realized that this lady’s parents would have been given a diagnosis of some sort as well, so all was excused very quickly. I explained the tube this time and then every time we visited the store for the next 10 months…
8. She couldn’t ask for a better family!
Darn tootin’, its true Col and I are all kinds of amazing super parents… But while in context this is meant as a compliment, it also comes in other forms of statements, and the most common is, “God only picks special people to parent special children.” The choice is really ours…
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9. Oh, that’s a shame! (This also comes out as “I’m Sorry…”)
What ever happened to the good old-fashioned celebratory greeting at the birth of a child: “Congratulations!”? So simple, yet eloquent, goes well with pink or blue and trust me when I say after the whole birthing process it’s all any parent wants to hear (diagnosis or not)!
10. How long will she live for?
My response to this is always, “I don’t know, how long will you live for?” They stare at me blankly, and there’s an awkward silence while again I internalize yet another face-palm.
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11. Are you sure? She doesn’t look like she has it.
Yep, I’m sure… face-palm again.
These things and more have been said to me or my husband in the first 12 months of Eden’s life. Trust me when I say we don’t hold a grudge against anyone who may have said these things to us; we understand you’re not in our shoes and you weren’t aware. Our lives are about awareness now. This is awareness and if everyone knew, awareness wouldn’t be required. So now you are aware; file it and use it as knowledge when you’re next chatting to someone who has a child with special needs.
I’ll let you in on a little secret: we just want our children to be treated like anyone else. It’s called inclusion. Ask yourself, “How would I feel if someone asked me this?” Chances are they’ll feel the same way.
By Ruth Usher for The Mighy
