I would like to think I’m pretty open to what people say, especially when they are trying to be helpful, knowing that everyone has varying experiences. But there are two words or phrases to avoid like the plague in regard to Down Syndrome and individuals with special needs.
1. The r-word—I don’t know anyone personally and pray to never know someone who would use that word purposefully to refer to my son or any of my other dear family members or friends who happen to have an intellectual or other “dis”ability. But well-meaning people still use that word casually to refer to something that they think is bad, wrong, or dumb. People may not mean it this way, but it’s hurtful every time. If you’re in the habit of using that word, there are so many other options in the English language. Please choose a new one.
2. “Down’s child or down’s baby”- This is one I was not really aware of before having our son, but special educators, therapists, parents, and others who regularly work with kids with special needs taught me well. When you say “down’s child” or “disabled person” it takes away that child’s or person’s identity and prioritizes the label. Think about the difference between saying “Gabriella, an autistic child” and “Gabriella, a child who has autism.” In the first description, it’s hard to look past the autistic label to see Gabriella for who she is. In the second, autism is still there, but it doesn’t overpower Gabriella. The difference may seem small, but these small nuances of language make an enormous difference on how we see and treat people. James may have Down Syndrome, but he’s not Down Syndrome James. People-first language—it’s a beautiful thing.
While on the topic of language, there are a billion posts and articles about what to say or what not to say to a parent who is expecting or has a child with Down Syndrome. These sorts of lists can be really helpful to someone, like me, who is generally pretty awkward and easily freezes while worried about saying the wrong thing in a new situation. But everyone has their own story and journey and something that could be offensive to one person might actually bring comfort to another.
One of the best things anyone did for us when we were expecting James (and still does for us now) was just ask how we were doing and how James was doing. This check-in opens up the conversation the way the parent might like it to go. You can find out pretty quickly if parents want to engage or not. Most of the time, you find that parents want to talk and share their experiences, trials, and their joys just like anyone else would.
I still remember a couple of months after James was a born, a good friend just touched my arm and asked, “how are you doing with everything?” No blanket statements about children with Down Syndrome or about how special children get special parents…just checking in. I will always remember that. Not just for parents with children who have special needs, but parents and people in general. The new sleep-deprived mom or dad with the colicky baby most likely appreciates a genuine “how are you doing?” more than the “The time goes by so fast..enjoy every moment” bit.
But be prepared--the “how are you” also gives parents a chance to brag shamelessly about their little ones. You’ve been warned ;)