As a parent of a child with Down syndrome, I’ve been lucky enough to have supportive, understanding, and positive friends and family.
Then there’s everyone else.
Most people don’t mean to be hurtful or ignorant. When confronted with a friend telling you, “Hey, my baby has been diagnosed with Down syndrome,” your mind goes blank. What do you say that’s appropriate? Too many people just blurt out the first thing that comes to mind without stopping and thinking about what they’re saying.
The excuse is that they just don’t know what to say. They don’t understand why apologizing can be insulting. They think saying that people with Down syndrome are happy all the time is reassuring. There’s an endless parade of ignorance, and it makes us cringe every time. And there are six things in particular that Down syndrome parents wish you would just stop saying.
6. God gives special children to special parents.
This is supposed to be a compliment, right? It’s not. It’s actually pretty annoying. And it’s a two-fold insult.
First, you reinforce the idea that people with Down syndrome are a bigger burden than other children. This is obvious, because if you didn’t see them that way, then clearly you wouldn’t think they need extraordinary parents. There is this idea out there that only some people can handle having a child with Down syndrome, while for most people, it’s just too hard.
Would you take kindly to hearing in a roundabout way that your kid is such a pain that only a certain kind of person can handle him?
Second, we aren’t “special” parents. We’re people who received a child with Down syndrome and we still love and raise them like our other children. Would you tell a parent whose child suffers from cancer that God gave them this burden because they’re special parents that He knew could handle it? Probably not. There are any number of difficulties and issues that can pop up during the raising of a child, and it doesn’t take a “special” person to handle any of them. All raising a child with Down syndrome requires is unconditional love. That’s something all parents must possess, right?
So stop sanctifying us. We’re just like you.
5. Babies with Down syndrome are just angels!
After getting a diagnosis and sharing it with the world, parents inevitably hear this, or something similar — people with Down syndrome are so loving, or they’re always happy! — because people want to find something positive to say. And people who aren’t familiar with Down syndrome believe it a lot of the time. They believe that people with Down syndrome are just little balls of love and sunshine and happiness, and they never get angry or sad or upset.
Apparently, only “normal” people experience the full range of emotions.
While people with Down syndrome are pretty dang awesome, they’re still people. They are happy sometimes, yes. And sometimes they get sad, or frustrated, or angry, or stubborn, or mean. They aren’t perfect little people who exist to smile and make us all feel better about ourselves. They’re people. Babies with Down syndrome cry, kids with Down syndrome throw temper tantrums, and adults with Down syndrome aren’t always happy.
4. You better not have any more kids.
Evidently, having a special needs child means you need to hold up on having more kids. Because, you know, kids with Down syndrome can end up being such a burden that you won’t be able to handle more kids.
In the real world though, there’s often next to no difference in how you raise a child with Down syndrome versus how you raise a “regular” kid. Challenges exist but can be overcome, and day-to-day, they’re not even noticeable. Parents may or may not want more children, but saying that their existing child is so difficult to handle that siblings should be out of the question amounts to another insult.
Also, people who have siblings with Down syndrome aren’t resentful of the ungodly burden they have in their disabled brother or sister. Over 90% of people who have a sibling with Down syndrome say they are a better person because of that sibling. So just look at it as our way of making the world a better place… one sibling at a time.
3. She doesn’t look like she has Down syndrome.
People have a set idea in their heads of what someone with Down syndrome looks like. After having Wyatt, I now hear over and over again that he is just so stinking cute (because, well, he is), and then, “He doesn’t even look like he has Down syndrome!” This is usually accompanied by a broad smile.
I always respond by saying, “Oh, thank God! Because I had been having nightmares ever since before he was born that he would look like a deformed Down syndrome child.”
Oh, wait. That’s not how I respond at all.
People with Down syndrome don’t all look exactly alike or all have the same features. And congratulating someone on their child not looking like your expectation of what a child with Down syndrome looks like isn’t exactly a compliment, either. You might as well say, “Hey, way to go on having a kid that’s not deformed!”
2. I’m sorry.
It is one of the worst things a Down syndrome parent can hear, yet it’s also one of the most common. I’m sorry. It’s the go-to response when people are told that a friend’s (or relative’s) child has Down syndrome. It’s also painfully clear that they don’t stop and think about what they’re actually saying.
A person with Down syndrome has an extra copy of the 21st chromosome. That’s what the condition is. It is in their cells, their DNA. Down syndrome is part of what makes them who they are… so when you apologize to a parent whose child has Down syndrome, you are apologizing for their child’s existence. Down syndrome is not a disease. It’s not like a kid who was diagnosed with cancer. And it’s not something to apologize for. Kids with Down syndrome laugh, play, and learn just like any other child. They aren’t freaks of nature that parents are cursed with raising. There’s nothing to apologize for. We aren’t sorry, and you don’t need to be, either.
1. You should have had an abortion.
Not all parents of children with Down syndrome find out prenatally. Not even a majority of them do. But some of them do, and 90% of those children are aborted. So for the rare 1 out of 10 that chose to keep their child, it’s a pretty big gut punch to hear that someone thinks their baby should have been aborted.
And yes: people actually say this.
Here’s why: from the moment that prenatal screening comes back positive, the mom is almost always getting pressured to have an abortion. It’s awful to tell a pregnant woman that she should abort her baby, and it’s a statement that would never be acceptable if directed towards a “normal” pregnancy. Yet its OK to tell a woman whose baby has Down syndrome that she shouldn’t keep it? Having an extra chromosome apparently means not only that the baby shouldn’t even get the chance to live, but that it’s also perfectly acceptable to tell his mother that he should have been killed.
What moms who receive a prenatal diagnosis need is support and understanding. They don’t need condescending, ignorant people telling them to kill their baby.
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