The Mighty Logo

How I Explained Down Syndrome to My Daughters

The most helpful emails in health
Browse our free newsletters

Shortly before World Down Syndrome Day this past March, I wondered if my two school-aged daughters really knew what Down syndrome is.

My firstborn, River, was 8 years old at the time and she has Down syndrome, but there was never an instance where we pointed that out to her just like no one took the time to point out certain human characteristics of mine to me. “Now Jenny, you have a size 10 foot. It’s not common but it happens. About 1 in 700 women have ginormous feet*. What this means is in life you will have a difficult time finding shoes that are both fashionable and don’t make you look like Frankenstein.”

Millie, my second daughter, had only recently turned 5 when I realized we had never taken the time to have a deliberate discussion about Down syndrome. I mean she knows what Down syndrome is because she lives with her sister every day of her life, but knowing from experience is different than knowing a definition.

Millie was most of the way through PreK at this time in the same school where River attended second grade. Other kids in her class knew more textbook stuff about Down syndrome than she did and I didn’t want Millie to be shocked by questions or conversations about her sister. Also, since starting school, she began asking things like “How come River can’t talk?” I think seeing River at school with her classmates emphasized her differences.

To be honest, I didn’t even know if River herself knew she had Down syndrome. It’s not like we truly avoided the topic. Till then, I treated it like a sex talk: only answer what’s asked. Now though, both girls were old enough that not knowing about it felt a little irresponsible on my part, so I decided to have that talk.

We read Gail Hamblin’s book “More Alike Than Different” and afterward I asked the girls if they knew anyone with Down syndrome. River said “Yes!” stuck up her thumb and pointed to her chest. That was a relief. She always has known more than she speaks.

Millie was a little confused though. She asked “where is the Down cinnamon?” when I indicated River has it, as if it were something special in her pocket. Millie was genuinely miffed that she didn’t have any of the Down cinnamon for herself.

From that point on, I started making more casual but conscious efforts to bring Down syndrome into the conversation. “This weekend we are going to the Down Syndrome Association party!” or “Which boy are you talking about? Is he the one with Down syndrome or the one with curly hair?” I even talked to Millie alone about why River has such a difficult time with speech.

I don’t know if I’m going about this the best way, I’ve never had kids before! I just try to pump my actions full of love and good intentions and hope for the best.

World Down Syndrome Day arrived. Our elementary school has a fun tradition of wearing mismatched socks on this day. It’s much like the Rock Your Socks campaign except in our small town they call it Lots of Socks and celebrate awareness of all disabilities. River is their only student with Down syndrome (maybe the only one they’ve ever had) and there are other fantastic kids with disabilities in the school worth honoring too.

As we dressed that morning, Millie insisted she also has Down syndrome and pointed to her mismatched socks as evidence. Close kid, you’re close.

*1 in 700 is actually the number of babies born with Down syndrome in the U.S. (according to the NDSS) and not the statistic of women with size 10 feet. I have no idea what that statistic is.

Originally published: November 20, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home