What’s wrong with her? And 10 other things you should never say to the parent of a child with Down syndrome.

by Ruth Usher

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 into one, how strong and independent she will be or how much she would add to society. 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 two (maybe a political career is in her sights). There’s a whole shopping centre of people who go home with a warm glow in their heart on my shopping day, 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!

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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. Eden through early intervention, different therapies, good nutrition and a whole lot of love will be the best she can be. Plus while we’re here why is our world so concerned with high functioning anyway. What if she’s not, what if your kid isn’t, do we love them less, throw them back in, go off and get that test? Its continual thinking like this that forces people to prenatally test, God forbid you have a child who’s not high functioning! All life is valuable, everyone contributes! My response to this one now is always “define high functioning”.

You know it’s part of her “syndrome”. DON’T PUT MY CHILD IN A BOX OF DIAGNOSIS! I would like to just leave this one here but I feel I need to elaborate. 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, prepare yourself to be treated with the contempt you deserve as I stare blankly while I internalise a massive face palm before turning and walking away.

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.

You know she’ll never get married! Is that really what you think? And if so you really shouldn’t have verbalised it. Eden may get married, she may not and it would be the same if she didn’t have DS. 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.

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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What’s wrong with her? Sometimes you just have to laugh and that’s exactly what followed 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 it was at the tube not at her diagnosis, it wasn’t the politest way to ask. As I got closer I realised that this ladies 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…

She couldn’t ask for a better family! Darn tootin, its true Col and I are all kinds of amazing super parents… 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” is that why orphanages all over Europe and Asia are full of babies with DS, abandoned, lying in cots all day long, not held, not interacted with and not loved. Then if they’re not adopted (to mostly American families) by age 5 they are then institutionalised for life. In my experience with God he never really picks the special, he always takes the ordinary breaths life and gives us every opportunity to succeed. The choice is ours of whether we run with it, sadly too many choose not to!

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!

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, there’s an awkward silence while again I internalise yet another face palm…

Are you sure? She doesn’t look like she has it. Yep, I’m sure…face palm.

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 wearing 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 and it’s called inclusion. Question yourself, how would I feel if someone asked me this? Chances are they’ll feel the same way.

Just like an inappropriate joke in a wedding speech, this blog is begging to be shared!

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10 thoughts on “What’s wrong with her? And 10 other things you should never say to the parent of a child with Down syndrome.

  1. The craziest comment I’ve ever had is from a person working in the disability sector, my little bundle was barely 12 weeks old when she blurted “you’ll have to keep an eye on her when she’s older, kids with DS are promiscuous”. Another suggested I watched ‘Dream House’ on ABC so that I may get an idea of how my child’s life might be when she’s an adult…..sometimes there are just no words!

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  2. Ruth,

    I agree with your overall theme; and where I disagree with you it is because I don’t think you go far enough!

    You say ‘there is only 1 characteristic that correlates for all individuals with DS and that is intellectual impairment’, and I don’t that is necessarily true. Watching my little guy grow, I suspect that his core intelligence is on par with his siblings, though perhaps with some specific disabilities. I believe that in his lifetime we will see many people with DS who have typical intellectual development simply because of changing expectations.

    Along the lines of changing expectations changing lives, I fully expect that more and more people will hear the ‘are you sure’ comment simply because their children will do so much better than the low expectations.

    -Jon

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  3. Hi, great post, thank you and your girl is a massive spunk. I am absolutely gob smacked that any one would ever even think of saying such things to you! I am very much afraid that my response to the “so how high functioning will she be ?” question would be “So much more high functioning that you, thank goodness! ” I wish you all the very best. Ruth.

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  4. I find it odd that I found your blog today of all days. Just yesterday I was going through some stuff and found an old Elvis t-shirt. At first i could not recall why i would have this t-shirt. Then I remembered. It belonged to my friend Karen who had DS. The things I remember most about this friend is that she had a very powerful, distinct personality. Down syndrome had little to do with who she was as a person. She was Karen, she was my friend. Thank you for sharing this.

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