When People Give Me ‘the Look’ After I Tell Them My Daughter Has Down Syndrome
There it was again — that look. I’m sure most parents of children with special needs know “the look.” It’s the expression that conveys pity. The tight lips and furrowed brow clearly say, “You poor thing. I’m so sorry you’ve been saddled with this burden.”
When we get the look, we immediately realize we must sound we’re speaking a foreign language the other person doesn’t understand. Do we stop and translate, or do we ignore and move on?
Whenever I was presented with the look when my daughter was a child, I was pleased to have an opportunity to educate the listener. I was a walking encyclopedia of facts about Down syndrome. I translated like nobody’s business.
Now, 30 years later, the national consciousness regarding people with special needs has been raised and Americans are more aware. Yet, mentioning my daughter’s Down syndrome to someone new is still occasionally met with the look. I meet people regularly during my work as a background actor, and inevitably, we have down time during which we sit and wait and chat. I’ve noticed if the subject turns to our children, I’m mentioning my oldest less and less.
It’s not because I’m ashamed of her; I’m very proud of her and her hard-earned accomplishments. But when I say my 30-year-old daughter lives at home, they often tilt their heads quizzically and I feel compelled to explain why. My face is smiling and my lips are moving, but inside my head, a psychological wince is preparing me. Here we go, I think.
I confess, there are times when I just don’t feel like giving someone the chance. Selfishly, I don’t want to deal with it. That’s when I don’t mention her (and feel guilty) or skip the details. Or if I do mention Down syndrome and get the look in return, I don’t acknowledge it, opting instead to talk about my daughter with clear context clues that — I hope — convey “she’s a cool human being” and “I’m so lucky to be her mom.”
Do they pick up on the clues? Hard to say, but I hope so.
Not everyone responds the same way. Many reply with a simple “OK,” while some say “Oh!” and listen attentively while I go into what a lovely young woman she is. Either response is cool. Some are more interested and even ask questions about her life and well-being.
That’s even cooler, because really, I want to talk about all of my children with pride and adoration. It’s a mom thing.
Once I was pleasantly surprised when a fellow actor my age replied that his little sister has Down syndrome. Even though he was not directly responsible for her care, we spoke the same language. No translation required.
I’ve found that responses tend to vary according to generation. My generation is more likely to offer the look of sympathy, while my three younger children don’t see it much when they talk about their big sister.
Their generation seems to be better educated, thanks to the accessibility of information, which makes them more accepting. That’s a promising characteristic of the millennials, and I hope their relaxed response constitutes the norm seen by parents of infants with Down syndrome. My wish is that someday “the look” will only be read about but never seen.
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Whether as a writer, editor, or educator, Pepper Caruso is in her happy place when playing with the building blocks of the written word. This joy for the power of language continues in both her own daily writings and in her passion for theater. She’s a proud New Orleanian and the mother of four pretty cool and accomplished young adults, the eldest of whom has not only been her greatest teacher but also her favorite comedian for over 30 years.
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