Four things you might not want to say to a parent of a child with Down syndrome

I don’t write much about Down syndrome these days because, from an emotional perspective, it has become such a small part of my life. Writing about Down syndrome in my blog helped me come to terms with Chloe’s diagnosis and I can say, for the most part, I am OK with it now and I look back on that time with very different eyes.

These days, I don’t feel the need to share our day to day experiences to show the world how amazing she is. Chloe has so many people who love her, include her and treat her like any other kid and that’s all I want for her in life.  I am sure she will come across some ignorant strangers or acquaintances in the future but I don’t care about them and I will teach her to do the same. She experiences so much love and acceptance from those around her that they will never matter.

There will always be times, however, when people we love might say something a little hurtful without meaning to. In general, I’ve never been the sort of person who gets offended easily. People say things as a joke (or maybe not) but what ever. I might have a little vent but I’d rather let things go and avoid confrontation – especially over things that hardly seem worth getting upset about.

Unlike myself, when it comes to issues around Down syndrome, some parents can and do get very offended. So, I have put together a list of a few things you may want to reconsider saying to a parent of a child with Down syndrome (or any other condition) that might help avoid any upset.

The word retard

The word ‘retarded’ is a medical term used many moons ago to describe a person with cognitive impairment or who is limited in intellectual understanding and awareness. It is no longer used within the medical profession and has been replaced with terms like intellectual disability and developmental delay.

Now, this word still doesn’t really offend me but only because many people who use it as a slang term are ignorant to what it actually means. Up until I had Chloe, I too thought it to be another term for an idiot. I am pretty sure growing up I used to call people a retard because it seemed much more polite than calling someone a dickhead. But knowing what I know now, it’s not really polite at all.

I had dinner with a friend once who used the word many, many times during conversation and finally I said to her “Do you know what the word ‘retard’ actually means?”and her response was “yes, the village idiot or a moron.” When I told her the real meaning, she was horrified and kept apologising. I was not angry at her because as I said, many people like my friend just don’t get it, but I am glad she knows now.

Didn’t you have the tests? 

When Chloe was a baby, I got this one a lot. This question can be preemptive of ‘wouldn’t you have terminated?’ People need to realise that those screening tests you have prior to 12 weeks of pregnancy are not a definite when it comes to Down syndrome. All it indicates is your risk. You can have a 1:10,000 chance of having a baby with Down syndrome and be that one who does or, you could have a 1:2 chance and not have a child with Down syndrome. Knowing the me I was before I had Chloe, if I had have come up as high risk and been offered an amnio, it is likely I would have terminated, but I am so incredibly glad today that I wasn’t given that chance.

A couple of years ago, there was one person who followed that question up with the comment “I would have terminated.” Now, I respect everyone’s personal opinion on termination. I know this person didn’t mean any harm and I know she thinks Chloe is gorgeous but it was quite hurtful to hear someone say that when Chloe was standing right there in front of her. I would never judge anyone who chose to terminate a pregnancy that was positive for Down syndrome but I would hope that everyone who knows Chloe would look at her and see a life worth living and at least question their beliefs on terminating a baby with Down syndrome.

It doesn’t look like she has Down syndrome, she is so beautiful

When Chloe was a baby and I was still coming to terms with her condition, I used to love it when people would say this to me. These days, I have accepted that I have a child with Down syndrome and I hardly even think about it much. Chloe is just our sweet Chloe.

I do on occasion still hear this from people and I know it is only said to make me feel better but really? Chloe actually does look like she has Down syndrome and that’s because she has Down syndrome and that’s OK. She is beautiful because she is beautiful. That’s it.

Kids with Down syndrome are so happy and loving

Many people have a stereotypical view of Down syndrome. Although they may have similar features and characteristics, people with Down syndrome are all so very different from one another. They all have their own unique personalities and abilities, strengths and weaknesses and all of them have and show a full range of emotions.

Yes, Chloe is very happy and loving but so is Emma. Chloe is also easy going and has a very even temperament but so do I. Down syndrome has caused Chloe to have a developmental delay, low muscle tone and she is smaller than most typical 4 year olds. I don’t believe her condition has affected Chloe’s personality in any way. Maybe what people mean when they say this is that kids with Down syndrome are perhaps more open with their happiness and their love.

These things and more have been said to me mostly when Chloe was a baby. I don’t hold a grudge against anyone who has said (or will say) anything that might make me raise my eyebrow a little. The reason I don’t get upset or offended is because people don’t understand what it’s like to have a child with Down syndrome and I don’t expect them to. The only people who will ever ‘get’ how I feel are other parents who also have a child with Down syndrome.

And that’s OK.  🙂