Person first: “I am not ‘a Downs child’, I am a child who has a condition called Down Syndrome”

If you don’t know somebody with Down Syndrome, it can sometimes be daunting / unnerving to know how to interact with them. What we don’t understand can make us, well, a little bit scared. So, the aim of this piece is to bring some understanding that will help you realise that people with Down Syndrome are more like us (typically developing people) than different.

What causes Down Syndrome is an extra chromosome. Our chromosomes are our building blocks that decide what colour our eyes and hair are, how tall we will grow, how fast we will learn to read, or ride a bike, whether we are good at football or singing.

"Keep calm: It's only an extra chromosome" T-shirt

Photo: Brian Carnell

Humans are usually born with 46 chromosomes; with Down Syndrome there is an extra chromosome attached to chromosome number 21, and this is what causes the physical characteristics common to Down Syndrome such as the almond shaped eyes, the longer tongue, the smaller stature. It is also the cause of the longer learning curve that people with Down Syndrome have. People with Down Syndrome are able to learn just as well as people who don’t have Down Syndrome, they just need more practice. How much more practice is needed depends on the individual, because just like any other child, children with Down Syndrome vary in their abilities and achievements. After all, there are 46 other chromosomes at work alongside chromosome 21!

The condition of Down Syndrome (DS) can bring with it increased risk of health conditions; almost half of babies born with DS have anomalies with their hearts, many may have problems with their bowels requiring surgery to repair, and it is quite common for kids with DS to have ear, nose, throat and thyroid problems. When you think about how much many of these kids have been through before they walk through the school gates, it’s quite inspiring how much zest for life kids with DS have!

Kids' questions about their classmates

Why do they ‘get away’ with being ‘bold’? It takes longer for kids with DS to understand the rules they are supposed to follow, like sharing, taking turns, and using words instead of hands to show others what they want (or what they don’t want) but they do get there. They get there faster when we can be patient and clear with them about what behaviour is ok and what is not ok.

Why do they talk funny? Depending on which site you Google, there are anything from 11 to 100 muscle groups used for talking. Muscle strength and control is part of the difficulties many kids with Down Syndrome has when talking: trying to get all these muscles working together is a tricky business!! Try filling your mouth with marshmallows, and then tell your friend what you did this morning. This will give you an idea of what it feels like for someone with Down Syndrome who is trying to talk.

Why do they stick their tongue out? The tongue of someone with DS is much longer and most mouths are actually smaller than if you haven’t Down Syndrome so, there aren’t many places for the tongue to go! Lots of kids with DS have to do particular exercises to train their tongue muscles, but it’s not an easy job. On the plus side, most kids with Down Syndrome can touch their noses with their tongues...easy peasy!

How can I help? If someone in your class at school has Down Syndrome then you can help by:

  • being friendly
  • helping when they need help. But, don't take over! It's good to be able to do things for yourself.
  • including them in your group or games, if they want to join in.
  • sticking up for them if others are bullying or being unkind.
  • helping them to learn the rules, eg. "It's my turn next then it will be yours again." Or "You have to put your hand up if you want to speak in a class lesson."
  • encouraging them to try, and praising when they do well.
  • understanding that they may be a bit 'over the top' at times when they are happy or excited. It's ok to say things like, "Whoa there, don't knock me over" or "Talk quietly please."
  • being clear that 'bad behaviour', eg. shouting, hitting, throwing things or taking things without permission is not okay from anyone especially a friend.

(From a page on the Child and Youth Health's site.)

Some video clips in which people with DS express themselves

Remember:

People with DS are more limited by other people’s expectations of them than they are by their condition, so expect the world from them....and they will deliver!!

— Crea O’Dowd