‘Daddy, What’s Down Syndrome?’ Explaining My Son’s Diagnosis to His Sister

Nico (who has Down syndrome) with his little sister Ellie. Photo: Courtesy of David Perry

My daughter is five and she likes to ask questions. Some are awesome: “Why can’t you see black holes?” “Why is sugar sweet?” “Can I be the first girl president?” “If I do this, will it explode?” (Answers: physics of light; chemistry of food; yes you can; and “Stop shaking that bottle right now!”).

Other questions are more complicated: “How do babies get inside mommies’ tummies?” and “Will you and mommy die?” We try to answer all questions honestly, but also appropriately for her age.

A few weeks ago, though, Ellie asked me the one question I’ve been preparing for since before she was born, but was still not ready to answer: “Daddy, what is Down syndrome?”

Ellie’s 8-year-old brother Nico has Down syndrome. Once Ellie became a walking, talking playmate, they developed an intense friendship and loving bond. And recently, Ellie began asking new questions. She wanted to know why Nico was going to therapy, why he sometimes left his second grade class to go to a special classroom, why an aide accompanied him in school, and why he used an iPad to communicate. In other words, she asked why he was doing different things, rather than why he was different than other children. The latter didn’t occur to her — he was, after all, her big brother Nico. My wife and I answered Ellie’s questions by generally explaining the different ways people work on their challenges but we never used the words “Down syndrome.”

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Recently, we were driving by the local high-school when Ellie said, “If we still live here when I’m older, that will be my high school someday!”

“That’s right,” I answered, “And you will walk or bike there, or maybe even drive when you are old enough.”

She replied, “Or my big brother Nico can drive me! Because he’s going to go there too and he’s older than me, so he’ll be able to drive first.”

These words struck me hard. People with Down syndrome are doing amazing things, proving that we have no idea about their true long-term capabilities. We believe that Nico could, in time, do anything, and that’s how we raise him. But we’re also realists. It’s not likely that Nico will be driving his sister to school in the future. But how could I explain the potential consequences of Nico’s disability without making him a “disabled person” in his sister’s eyes?

I got another opportunity a few days ago. Ellie overheard me talking to my wife about Down syndrome. It was a broad conversation and I’m not sure how Ellie connected the topic to her brother. I saw her register the phrase, then she asked, “Daddy, what’s Down syndrome?”

I froze. My heart raced. I sat down with her, unsure. This was not the time to unleash language about chromosomal mutations and risk factors — but what should I say? There are many books just for this moment, but I didn’t have any on hand. And I owed it to both my kids to answer in my own words.

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“Down syndrome is a condition that happens to some people before they are born,” I said. “People who have it sometimes have trouble learning to do things — like talking, or writing, or riding bikes. But with lots of help from friends, family, teachers, doctors, from everybody really, people with Down syndrome can do all kinds of things. We just have to be patient and work together.”

“Do I know anyone who has Down syndrome?” she asked.

“Yes. Lots of people.” I mentioned the names of some friends, then added, “And of course Nico has Down syndrome.”

“Oh,” she replied, unfazed. “Thanks, Dad!” Then she ran off to play.

It’s not the first time a weighty parenting moment passed without much comment from my daughter. It probably won’t be the last, as she dashes through her fifth year, fueled by an insatiable appetite for both ice cream and answers to her questions. She asks hard questions, I give her the best answers I can, and she absorbs them. We have words to help her recognize his accomplishments and challenges. Information, honesty, and lots of time together — these are keys to raising our children.

That doesn’t mean I got it right. There are other things I might have wanted to say when describing Down syndrome to Ellie for the first time, instilling understanding of doing versus being different. Fortunately, there will be other chances. She’ll be back with more questions soon enough. Each conversation is more than the sum of its parts, as Ellie develops into a pretty remarkable girl.

There’s lots of research on siblings of people with Down syndrome that argues the diagnosis can create a positive impact on the family, but I never really trusted the statistics before I saw it with my own eyes. Ellie understands that Nico is going to do things differently, in his own way, but for her it seems just to be a fact of family life. He’s a member of her family, he’s an interesting person to be around, and he’s the best possible big brother.

I shouldn’t have worried so much about the Down syndrome question. It wasn’t nearly as hard to answer as, “How do babies get inside mommies’ tummies?” For that one, I’m definitely using a book.

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