We told Jack that his little sister has Down syndrome.
“Hey Jack, do you know what Down syndrome is?” my husband asked my son on Sunday morning during breakfast.
“Uh huh,” said 3-year-old Jack. This is his standard answer for every question that starts with “Did you know…”
“Down syndrome is a genetic defect that some people are born with. It just means that people with Down syndrome may be a little bit slower to learn to do things like run or jump or sing, but they will get it with a little extra practice.”
“Uh huh,” said Jack, looking at Ben a little confused. I suspect the confusion was partly because he wondered what this had to do with him, but mostly because he couldn’t decide if it was a good time to ask to be excused from the table or not.
“Your sister has Down syndrome. Did you know that?” I said.
“Uh huh,” said Jack.
“Hey, if you ever have any questions about your sister or Down syndrome, you just let us know. Okay? We are happy to talk to you about anything you would like to talk about,” said Ben.
“Okay. Bye,” he said as he raced off make sure his monster trucks were protected from Ellie who was starting to crawl dangerously close to them.
Before we talked to Jack, I did my research. It is easy to get lost in all of the recommendations, both scientific and anecdotal, on when and how to talk to kids about their siblings who are different, have special needs or are in special circumstances. Whether it is cancer, Down syndrome, cleft lip and palate, learning disabilities or kids who get to use wheelchairs, the one thing that draws consensus is that talking about it in the open is better than pretending it doesn’t exist.
The words that kept repeating in my head were from a Martin Luther King Jr. quote: “Darkness cannot drive out darkness; only light can do that.” While he definitely did not say that in reference to family secrets about Down syndrome, this insight has been a directive for me in many situations and helped me make decisions throughout my life.
We can choose to arm our family with information or we can keep quiet and run the risk of this becoming somewhat of a dirty secret. Ben and I have chosen to keep Ellie’s Down syndrome, medical conditions and challenges in the light instead of hiding them in the dark – something that we believe would give her diagnoses a negative context or reason to be ashamed.
Now, Jack is only 3. We know that this conversation with him is just the beginning. But his reaction is the exact reaction that we hope he continues to have – no reaction. Nothing to special to see here, just a regular occurrence in our regular day.
When I was pregnant and we found out Ellie had Down syndrome, we decided that we did not want it to consume our lives. It could not become the cornerstone of our family.
Each person in our family is special and holds unique talents, features and challenges. We will celebrate what is different about each of us, but also understand that no one gets special treatment for those differences. Learning about what makes one special is far more fun than what life would be like if we were all the same.
Originally published in November 2019 Little Rock Family