12 Things to AVOID saying to a parent of a child with Down Syndrome

There are many things that people who have little to no experience with Down Syndrome say. Some of these things can be heartfelt and other times what they say often reflect old myths surrounding the syndrome. Quite a lot of the time I find myself as a parent who often grits their teeth and often I get an overwhelming urge to claw my eyes out when having to bite my tongue. I have compiled a list of some of the things it’s perhaps best to avoiding saying to someone who is a parent/guardian of a child with Down Syndrome and what to possibly say instead. I know sometimes people actually do mean well, but just remember how important it is to think before you speak in these sorts of situations. I am not trying to have a dig at anyone who has said some of these things, as I am sure I have probably fallen culprit to saying some of them in the past too, probably about numerous situations, but we all live and we all learn and that’s why it’s important to educate ourselves. By reading this you can help inform others and spread Down Syndrome Awareness.

1. I am SO sorry! or What a shame etc… Β I can understand why people often react this way to these types of situations. However, what is it that you’re sorry for? My child has not died! I know some people do know about Theo’s heart condition, but the majority don’t. So if my child was completely healthy why are you sorry? Why is it a shame? This quite clearly indicates how people are often sorry that he has Down Syndrome. Any child can have any level of learning ability, both mental and physical, whether they have DS or not. I have my own ‘additional needs’ and no one says how sorry they are to me. Just because he may have slightly different physical characteristics does not make him his own race. So please don’t be sorry. Congratulate the parents, it’s been a long 9 months of growing a baby. They deserve just as much enjoyment surrounding their baby as any other parent.

2. They’re ALWAYS loving.
Who are they? Children? Boys? Girls? Penguins?… going back to what I said before, please don’t talk about individuals with DS as if they are an alien race. My little boy is only nearing 11 weeks old and he definitely has an overwhelming attachment to me. There is of course obvious elements of love and affection between us both, but just like any other baby he can be grumpy and stroppy and he, like any other child enjoys frowning whilst often pulling at my hair and kicking up a storm from time to time. Just because an individual has DS does not mean they will always be the most happiest, go lucky person in the world, if they choose to be they could be a total a** hole! It’s always about how a parent brings up their child and the type of personality that a parent passes through their genes. Instead of saying how my child will be super loving etc… say something like “I love how affectionate he is towards you,” or “what a loving bond you share” the ‘normal’ parent/child compliments, you get the jist.

3. You are so blessed.
This is a lovely comment to make but it is often more commonly used when describing a baby with DS. Of course my little boy is a blessing, but so are any other children. I thank my lucky stars everyday that I was able to carry and birth a beautiful little baby, some people never get this privilege. I got given the gift of life. Reassure the parents so that they know this. So think about how you word this question, instead say, “isn’t it amazing to be blessed with a child?”

4. God only gives special children to special parents.
This is another really lovely comment to make, sadly it isn’t always the case. I would love to think that I do everything for Theo and will carry on doing so for the rest of his life. The sad reality is that not all children with DS do have parents that are extra ‘special’. Implying something like this is like saying “God doesn’t give children to parents who don’t deserve it,” this is another reality that also isn’t true. Any type of parent can have any kind of child. Try complimenting the parents parenting skills instead and just reiterate what a good job they are doing.

5. But, they don’t look like they have DS!
I have definitely at times said this about Theo, especially when he was first born. However, by saying this, it implies that it is a bad thing to ‘look’ like you have DS. Children and adults with DS often look like their parents and relatives more than they look like another child with DS. They do however, share similar characteristics but these too vary. Once again remember we are not all the same. Another thing to keep in mind is the reason why the majority of individuals with DS don’t look like older stereotypes anymore is because you’re thinking about the sort of era of when it would’ve been your Grandma’s sorta style DS. Years ago children were often institutionalized with DS from birth and never had a chance to thrive and contribute, to develop and create their own appearances. We now live in the 21st century where time has moved on and attitudes have changed.

6. You’ll have a friend for life!
In short, yes, I will. I hope my future partner will be my friend for life too, as well as my close friends and any possible future children. Just because my child has DS does not mean he will be my friend for life. Anything can happen, we could have falling’s out, just like how potentially it can happen with any other person. Instead say “You’ve gained another friend for life.”

7. They’ll have to live with you forever! Won’t they?
No. Not necessarily each individual with DS learns and grows in their own time. If my child is perfectly capable of moving away or even just living next door, why should he have to live with me for the rest of his life? Perhaps he may have his own girlfriend one day? Why would they want to live with his parents? If he is capable when he’s 20 years old I won’t stop him. Stop trying to push old stereotypes on individuals with DS.

8. Didn’t you have the test?
I got asked this, a lot. Surprisingly by a lot of medical staff, with pure blame in their voices. This is a very personal question and unless a parent wishes to disclose this to you or unless you’re practically joint at the hip or maybe in a similar situation, do not ask this. I am open and happy to discuss this but let me be the one to talk about it. Remember though as a matter of fact it is really none of your business. Also do not ask if they will have the test in the future. Like I said unless you are personally very close or it is not a sore subject for the parent, please don’t stumble anywhere near this conversation. It’s my baby and my body at the end of the day.

9. Where is he on the ‘spectrum’, how bad is he, how high functioning?
This is something I was dying to know at first, myself. After quickly speaking to the doctors I learned that there was no way of telling till he grows up, I mean honestly how is there? It’s like trying to ask the child with DS yourself. I wanted to know as a worried parent; all I wanted was for my child to be healthy. If it comes from another person it can come across rather nosy and irritating, as this is a question I can’t even answer myself. It’s like me asking you how smart your child is? Would you really want to disclose that? Instead acknowledge the child’s accomplishments and speak about them in a positive manner whilst giving praise where you can. Do not do this patronizingly.

10. How long will he live for?
*Big massive face palm*

I have absolutely no idea, sorry for the sarcasm, but why don’t you go and ask Madame Clarice and her shiny crystal ball to predict the future for you? Sorry not sorry! Honestly though, I mean you really just asked me this? When are you going to die? Go on tell me!? This is a really naive and daft question and anything can happen to anybody at any point so really why is there any point in asking this? Most individuals, not all, live into their 50’s/60’s and live a happy and fruitful life, so please don’t assume that just because they can have a few more health problems that ‘they’ll all die in their late 20’s.’ Please don’t mention how common it is that people with DS often get Alzheimer’s or Dementia and most commonly pass away because of this disease. Remember! there’s this thing called the future, a lot can happen in five to ten years, let alone 50. Perhaps you could step off a curb one day and be hit by a car, you just never really know. I can tell you I won’t be taking life with my favourite little person for granted.

11. He may be able to work when he’s older with special care, in a sheltered environment!?
Perhaps he will. Even now individuals with DS contribute to society. You read that right, I said contribute, not blend in. If you haven’t heard about the numerous amounts of models entering into the fashion industry with DS and hairdressers and restaurants being run and owned by people with the syndrome, where have you been? It clearly must have been the stone age, as it’s been littered throughout the news recently. These days people with DS contribute to society more often than not and it’s a common trend to see a mixture of workers with new diversities and various abilities working in ‘normal’ environments.

12. Does he have/look/act/do that because he has DS?
Down Syndrome shares only one imminent characteristic and that is that individuals with DS will all have some sort of intellectual impairment. These vary too and also what kind. In terms of physical characteristics, speech, movement etc… Individuals with DS all vary and develop differently. They also grow up at their own rate and despite popular belief most of the time only develop behind ‘normal’ children on an average delay from 2 weeks up to 10-12 months. (Sounds similar to how ‘normal’ children develop? Doesn’t it.)

Stop. Think before you speak.

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8 thoughts on “12 Things to AVOID saying to a parent of a child with Down Syndrome

  1. totally relate to this. You’ve summarised things brilliantly. I remember a well-meaning onlooker suggesting my new born son would probably manage to be a bin man because there are programmes to help them didn’t you know? Numerous other ridiculous, crass (probably well-meaning) words. I frankly feel sorry for people so ignorant they just can’t get over themselves, rock up, smile, offer to help (and actually turn up!) and enjoy the new dimension in their lives. Well done! x

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    1. I know it is frustrating you would think people would know better! Its not just about your childs capability have but also about what they want to do :)! I feel people educate themselves about other things such as autism etc… But still have a very old fashioned view about Down Syndrome! Hopefully people will read this and know for the future πŸ™‚ and thank you πŸ˜€ x

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  2. People seem to feel they have to say ‘something’ usually the wrong thing but they mean it with no malice, I always feel the underlying feeling is that DS is a bad thing and they are trying to make it better somehow, these lists of what not to say are often similar to what not to say when someone dies, people need to stop trying to ‘help’ with their words

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  3. My daughter was recently diagnosed with 22q Deletion Syndrome… It’s a lot less well known than Downs Syndrome so in that way we are lucky because no one speaks about it… But then maybe that’s not such a good thing either… There’s nothing quite like putting the record straight…

    One of the features of 22q is appearance and I was quite insulted when a dr pointed out my daughter has a ‘dysmorphic appearance’… Purely because it could have been worded differently… I’ve always said she looks like a little old lady…

    I will pop back again to read your other posts later… Xxxx

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    1. Thank you for taking your time to read my blog whenever you want to talk again youre more than welcome to give me a pm on facebook and thank you for sharing about your little one! Doctors should know better but the majority of the time don’t 😦 xxxx

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