I’ve written it before but today I thought I’d share some of the questions we’ve been asked or statements that we’ve heard said when we mention that we have a daughter with Down syndrome. At times, some of their questions or statements initially seem odd, but then we remember that people are learning and asking questions, no matter how strange they may seem, is a great way for them to learn more.

Here’s a little peek into some of the things we’ve been asked or had said to us.

“She doesn’t look like she has Down syndrome!”

It’s funny how this one comes across like a compliment, but also implies that Down syndrome is something to hide or be ashamed of. It’s not!. There are times it feels like it’s obvious that she has Down syndrome, other times I look at her and I don’t see it. The thing is every child or person with Down syndrome will look different. There are many physical signs of Down syndrome but not every child will show all of them. Some kids it will be more obvious. For Hope, we could see it immediately when she was born. For others, it’s not so obvious. For Hope, I think the biggest signs of her Down syndrome are in the way she moves and speaks.

“Was she born with it?”

This is one that sometimes makes me giggle inside and goes to show just how little understanding is out there.  Yes, she was born with it. She can’t catch it, it’s not a disease or illness.  Down syndrome happens when there’s an extra copy (or part of a copy) of chromosome 21. This extra bit of genetic material affects how the body and brain grow. We can’t just add the extra chromosome later, or remove it.

“Do they know what causes it?”

As I said above, it’s just an extra chromosome. There’s nothing any individual can do to make it happen. It’s not like we’ve eaten too much brocolli, or exercised too much while pregnant. It just happens. There are a few factors that can give a higher chance of a child having Down syndrome. These are: older age, being carriers of the genetic translocation for Down syndrome, or having had one child with Down syndrome but again, there’s nothing that you can do to ensure a neurotypical child.

“I don’t know how you do it. I don’t think I could.”

I hear this all the time or variations of it like, “you’re doing such a great job”. There’s really nothing wrong with this statement, but I feel like it puts me up on a pedestal a little bit and I don’t think that’s needed. I’m a mum, I’m not a super hero. Do I do a lot for my kids? Yes! But that’s what we do as parents. We go the extra mile for our kids. We do what we have to do to give them the best life we can give them. We are just parents doing our best. I love that people think I’m doing a great job, but I think you would surprise yourself with just how much you can do if you had to. I’ve said it before, and I’ll say it again; Parenting is hard! Regardless of whether your child has a diagnosis or not… we are all just parents doing our best.

“What level of Down syndrome does she have”

Down syndrome doesn’t have levels. It’s simply Down syndrome. It’s not like autism which has 3 levels which determine how much support they need. So when we’re asked what level of Down syndrome Hope has, our answer is, she just has Down syndrome, there is no level. Yes, some kids with Down syndrome develop faster. Some can walk earlier than others and some can speak sooner, but almost all will learn to do these things in their time. It all comes down to how much effort you put in and really just when the child is ready. Like any child learning, they learn to do things when they are ready.

“Is it hard?”

The answer to this goes back to my statement that parenting is hard. So is having a child with Down syndrome hard? Yes and no. Yes, because parenting and teaching any child is hard, but no because having a child with Down syndrome isn’t really any more difficult than having a neurotypical child. There may be people out there who think differently but that hasn’t been my experience. Yes, I have challenges, some days are harder than others, but sometimes it’s not Hope that makes my days difficult. Sometimes it’s one or both of the boys. Parenting a child with Down syndrome is like any parenting journey, it has its moments. But the joy we feel on the good days far outweighs any of the challenges on a bad day.

“People with Down syndrome are always so happy, aren’t they?”

This is a stereotype of children with Down syndrome. Yes, they are often happy, but not always. You should see Hope when I say “no” to something she wants. Or when she’s had enough of therapy and she refuses to move. She is definitely not happy then! Having Down syndrome doesn’t mean you have only “happy” feelings. Like anyone, people with Down syndrome have a range of feelings. She can feel happy, sad, angry and one we so often from Hope, frustrated.

“Will she be able to…?”

This question can be finished with a whole range of things. But honestly, we don’t know what will happen in the future. We don’t know what Hope will be able to do. Right now, we’re not setting limits. We’re working hard and trying to ensure she is able to do everything she can. And as she gets older, we will continue to do so and cheer her on every step of the way.

If you ever see us out and about, feel free to ask your questions, we don’t mind answering, no matter how odd the question may seem to us, we know for others, the questions come from a place of wanting to learn and some come from previous misconceptions. We love that people want to learn!