parent opinion

'There are certain things you shouldn't say to the parent of a child with Down syndrome. I've heard them all.'

Having a baby is one of the most exciting things any couple can hope for. 

So when you get a diagnosis that changes the direction you thought you were heading in, it can be quite difficult to deal with what you’ve just heard. 

You have to change your mindset, because things aren’t going to be as you had originally planned. You work through it with family and friends, which helps you to get back on track, even though it’s a different path.

When we received the diagnosis of Down syndrome with our third child while I was pregnant, we were never, in our wildest dreams, ready for some of the remarks and comments that were coming our way. 

Watch: Vanessa Cranefield on parenting a child with a disability. Post continues below.


Video via Mamamia

I was lucky because I had made a great friend in Tina two years before I became pregnant with our last child. 

She has a daughter, Amy, with Down syndrome. I used to ask Tina many questions as we stood waiting for our older kids to get out of school and I loved watching Amy playing in the school ground. She played just like the other kids.

So, when we received the diagnosis of Down syndrome, although we still experienced many emotions, we thought we were well prepared for anything. We asked friends who had children with Down syndrome questions and we researched.

I was able to join a support group and that was invaluable. Being able to learn from the other mums in the group and to tap in to what resources we may need, and to also book those resources, was a huge benefit to me.

So, when I had my next appointment with my doctor, even though I was expecting him to inform me of my options, I wasn’t ready for the detail in which he delivered that news. 

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And even though I told him we wanted to find out purely because we wanted to tell our family and friends, he was professionally obligated to make me aware of my options.

I dealt with that and understood it. I wasn’t ready, however, for the detail in which he told me, and for the continual explanations around those options every time I saw him for the next few appointments. Over and over. 

I was becoming quite distressed about seeing him. I felt as though he was trying to force me to change my mind because he thought it was the better option.

Thankfully, eventually he stopped talking about the option to terminate my pregnancy.

I believe medical professionals need to change the way they deliver diagnoses and related information to families. The delivery of this news needs to be more positive, rather than doom and gloom. After all, it's a baby we're bringing into the world.

For example, instead of saying “Sorry, but we have bad news,” they could say, “We have picked something up in the tests and we would like to talk to you about it.”

The messages from health professionals were the first of the negativity I experienced with having a child with Down syndrome.

I didn’t really understand it, because I had now met many children with Down syndrome and to me, although they needed assistance with some things, they were just like any other child. They wanted love from their families and they wanted to play with their friends. Exactly like my older children.

The negativity didn’t stop there, unfortunately. I just wanted people to be happy we were having another baby. If I didn’t tell them about the Down syndrome, that’s the response we got… they were happy and excited for us.

When I told them about the diagnosis, their whole demeanour changed. They slumped over, had a sad and worried look on their face and said they were sorry.

I didn’t want them to be sorry. Why were they sorry? They weren’t having the baby, I was.

I found myself reassuring people that everything was going to be ok. Our baby was healthy, and he was going to be fine. We were already preparing for his arrival and we knew we would be ok.

Saying sorry to someone who is having a baby is demoralising. 

There are many examples of people with Down syndrome achieving great things in sport, school and even business. There are many adults with Down syndrome running their own businesses. 

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People don’t know how to respond, but perhaps if you find yourself in a position where someone you know tells you they are expecting a baby with a disability, instead of saying sorry, you could ask them how they are feeling about that diagnosis. Talk to them about it and the baby they are expecting.

We made the choice to find out about our son’s diagnosis so we could tell our friends and family, because I knew if we waited until he was born, the negativity would overshadow his birth. We didn’t want that.

We wanted him to be welcomed into the world just like his brothers had been. We wanted our friends and family to come into the hospital and our home and be happy.

By the time Darcy joined our family, thankfully that’s exactly what happened. He has never, to this day, known anything other than acceptance from those close to him.

When I took him to his brother’s primary school for the first time, lots of mums flocked to the pram to come and say hi. There were about 20 to 30 people around his pram. It was a bit overwhelming, but I was happy everyone wanted to see him and for the most part, everyone was congratulating me and seemed very happy for me.

The thing I remember the most about that day, however, is someone saying to another mum: “Oh, I don’t know her, I just wanted to see what the baby looks like.”

I was horrified. So, she’d obviously heard he had Down syndrome and wanted to come and see if he looked different. I don’t know what she thought she was going to find.

I quickly pulled my thoughts together and said, “What did you think he would look like? He looks like a baby.”

Everyone laughed and she left very quickly. I don’t even remember what she looked like but those words are still as clear as the day she said them 14 years ago. 

From all the positivity that day, that comment from that woman is the thing that stands out the most. Isn’t that sad?

If you find yourself in a position where you are curious to see a baby that has had a diagnosis like Down syndrome, please try to work on how you speak, especially when the mother of the child is there. This is her baby you’re talking about. If you’re curious, please ask her questions rather than making thoughtless remarks to others. 

Our son is an amazing young man and I wouldn’t change him for the world. He is very active and plays basketball; he’s done football and loves ten-pin bowling. He is passionate about singing and dancing and attends an all-abilities dance group.

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Darcy. Image: Supplied.

He attended mainstream schooling part time from kindergarten until graduation in grade six.

We are working hard to help him be as independent as possible and he is achieving some amazing things.

He is a person just like everyone else and has all the same wants and needs. He loves to learn, loves to make memories and experience things, he wants to be loved and enjoys hanging out with his friends.

Sometimes people say “I’m sorry” because they don’t know what else to say. There are many different things you can say, like “congratulations” or even “how is he going?” or “how are you going with everything?”

Darcy is our son and ultimately, we want the same for him as his brothers.

So remember to see the person, not the disability. They are a person first and foremost, living with a disability.

Be mindful of the words you are using. Be kind, and be supportive.

Feature Image: Supplied.

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