When my son was diagnosed with Down syndrome about half-way through my wife’s pregnancy, she and I began doing research. We didn’t know much about it, so learning quickly became a top priority for us. Much to our relief, there is no shortage of educational information when it comes to Down syndrome. What surprised me was the number of websites dedicated to not only educating people on what it is, but also on raising awareness of it. As one who was mostly uneducated and unaware, I (ironically) wondered why there was such a concern for “raising awareness”. Aren’t people already aware that Down syndrome is a thing?

What I did not realize is that being aware that Down syndrome is a thing is quite different from understanding it. And even if someone understands the genetic ins and outs of Trisomy 21, they may not understand what it means to have Down syndrome, or how important individuals with it are to the world. I realized the difference during a conversation several months later.

After my son’s birth, I was walking my dog when I ran into some neighbors. I shared with them that he had arrived and they expressed their excitement for us. As we talked, I revealed that he has Down syndrome. I was shocked by what was expressed next.

“Oh no. He’s Down’s? I’m sorry.” The statement came with a tone of sincere sympathy. He truly was sorry.

But sorry for what? In my mind, he was sorry that we had this kind of baby. He was sorry that we didn’t get a better one. He had just congratulated me, but now it was as if congratulations were no longer in order. We were pitied.

It was one of those moments that I feel like I’ve seen on TV shows. You know, when a character says or does something totally out of line and is about to learn a valuable lesson meant to better inform all of us watching at home? You know the moments I mean. The moments that you kind of roll your eyes at because they never happen in real life.

But it turns out that people really do say such things on occasion. And because it was the last thing I expected to hear, I was totally unprepared to respond.

I don’t really remember exactly what I said in response, but I think it was something like, “Oh, no, we are thankful for him.” And we were. And we still are. But as I have thought over that conversation since that day, I have had several different feelings. At first, I felt shocked. Then I became angry. Eventually, I arrived at empathy. I have come to see that for the better part of my life, I might have felt a little of what my neighbor expressed that day.

When I first learned of my son’s probable diagnosis (we didn’t confirm it until he was born), I had a brief period of denial. Why? Because I apparently assumed it was something that is undesirable. It was the same assumption that my neighbor had. And whether or not I would have actually said something like that to a new parent, I now realize that ignorance of Down syndrome leads people to think all kinds of unfortunate things. And I was not immune.

That is why we work to raise awareness.

Awareness that people are not “Down’s people”, but first and foremost people who happen to have Down syndrome.

Awareness that the unique challenges that Down syndrome may present are not the whole story.

Awareness that Down syndrome is not some kind of devastating affliction.

Awareness that people like my son are a gift to the world.

Awareness of the accomplishments of people with Down syndrome.

And on a personal level, awareness that, on most days, I don’t spend most of my time thinking about the fact that my son has Down syndrome. Not because I am still in denial, but because, as many have already pointed out, he and I are more alike than we are different.

I want to invite you to join us at UP21 as we seek to educate and spread awareness about Down syndrome. As we post blogs and articles from various perspectives (parents, researchers, and individuals with Down syndrome), please read them and learn with us. You may find out that some of your assumptions about Down syndrome are misguided or even completely wrong.

I know I found that to be the nature of my own assumptions. My son is a gift, and there is nothing about him I would desire to change. When I first found out that he probably had Down syndrome, that was probably not the case.

I'm thankful I am more aware now.


Adam Morris is an UP21 Foundation board member. More importantly, he is the father of Jude, an energetic, funny, and curious kid who also happens to have Down syndrome. You can read more from Adam on his blog adamsnotepad.com.