By Jill Rose

A couple years ago I was sitting by the pool with a friend and her two daughters. They were passing through town and stayed at our house for the night. I was talking to my honorary niece Mandy, who was twelve at the time, when she suddenly became sad and said, “I don’t like to go to our neighborhood pool anymore. The kids are so mean and always ask me ‘what’s wrong with your sister?’”

I asked Mandy how she responds when kids ask her this and she said she ignores them and walks away. What immediately occurred to me was that after years of seeing Amy at the pool, maybe the kids were just curious about her. I suggested, “Instead of walking away, why not try answering their question? Just say ‘my sister has mosaic trisomy 10, a very rare genetic condition. Do you have any more questions?’”

After having our daughter, Sophia, I experienced my own version of Mandy’s pool anxiety. Sophia was born with Down syndrome and pretty much every time we go to the grocery store, another girl will stare at her as if she just landed from Mars. The first few times this happened, I wanted to scream at the mother, “What’s wrong with your kid? She’s a monster!!!” But over time, I came to realize that every little girl can’t be a monster, so maybe I needed to reevaluate the situation. Little girls are curious and when they’re curious, they stare. In their mind, they’re trying to figure out what’s different, but don’t yet have the skill of masking their curiosity. So now I quickly lean down and say, “She was born with a disability called Down syndrome.” This usually breaks the scowl and the little girl’s face will lighten up as she waves goodbye and walks away.

So if anyone asks my son, “What’s wrong with your sister?” I tell him to stay calm and get technical. “Nothing is ‘wrong’ with her. She has Trisomy 21 also known as Down syndrome.” When we talk about this, my husband interjects “add details” like, “she didn’t learn how to walk until she was 4 and talk until she was 5. Do you have more questions?”

There are bullies who are mean, no question. But few people talk about the other category of children who are just awkwardly curious. It’s up to us as parents to remember that kids are naturally inquisitive and happy to get answers to the questions burning in their mind. So let’s assume the best and educate the world one person at a time.


img_7765**Jill Rose is the Center for Family Involvement’s videographer and social media specialist. She is the mother of two wonderful children. Her daughter’s Down syndrome diagnosis inspired her to make videos that can educate and inspire others.

Leave a Reply