Within moments, they turn back and ask. Sometimes it's with the sweetest, kindest of intentions because they have a story or poignant experience to share. Sometimes it's so clearly their meddling curiosity suppressing their manners.
And just as their intentions may vary, so do my reactions — I've teared up. I've gritted my teeth. I've been a little short. I've been a little long-winded (yes, I know... this is hard to believe). But each encounter has taught me something about people in general and about myself very specifically.
I love my normal
Sometimes, I am embarrassed. Not of my child who happens to have Down syndrome (Ds), but because I abruptly realize that what is so normal to me is different to someone else, and I find myself briefly viewing it as different, as well.
Usually, that's when my emotions transition to anger. I become flat-out pissed off that someone has made me look at my child differently. (Yes, Dad, I know, no one can make me do anything. Bah!)
I know this experience isn't mine alone. So many families today have their own recipe for normal. Maybe a child has autism. Maybe a child has cancer and has lost her beautiful curls while fighting for her life. Maybe a child has either two moms or two dads — perhaps, one mom and no dad, or one dad and no mom.
The formulas for today's normal are endless, much like our shared love for our children.
How we choose to embrace, reject or just float through each experience is driven largely by us.
A stranger in a grocery store can choose to focus on a baby's protruding tongue. An acquaintance at work who has met my children after knowing "Maureen without family" for years then spend the next 3 minutes assuring me that children with Down syndrome, well, "they are so lovable."
(Pssst. So is my daughter, sitting right beside him. Yes. That one.)
"My son always seems to notice people staring and waves to them," says Stephanie, whose 3.5-year-old son, Owen, has Down syndrome. "That either makes them smile and wave back or stop staring altogether. I'm all for them asking us questions if they are interested, but just staring non-stop is downright rude. I don't allow my son to do that and grown adults shouldn't either."
Carrie says, "I find myself staring at families that have a child with Ds with a smile on my face, wanting so badly to talk to them but I'm too shy and don't know what to say... Of course, they don't know I have a 5-year-old son with [Down syndrome]," she says. "I'm sure I've ticked off a couple moms," she adds with a laugh.
So, how should parents respond when they're on the receiving end of stares?
"Sometimes I will say, 'This is Tyler. Tyler, can you say hello?' And when my cute 5-year-old says hi, it's sure to break the ice," Carrie says.
Tackling questions (not people!)
Sara dives into the conversation. She has an older son and twins, one girl and one boy, who has Down syndrome. "We get lots of comments because of the twins," she shares. "[People ask], 'Are you sure they are twins? She is so big and he is so little and they look nothing alike!'
"My response is always, 'Yes, I'm sure they are twins. She looks like her dad and he looks like me.' [The next question is usually], 'But why is he so little?' (Sara says her response is direct) 'Because of his Down syndrome, but he'll catch up.' She says that's often followed by an awkward, 'Oh,' — or sometimes — 'Oh, I have friends/family etc., with Ds.'"
Another frequent response is one likely all parents of children with a disability experience — the apology after someone learns of your child's disability. "To which I always say, 'I'm not sorry at all,'" Sara emphasizes.
Why engage at all?
"My husband [is] always in [the] background, rolling his eyes because I like telling strangers," Sara says. When he asks Sara why she persists, she narrows it down to these reasons:
- "It's fun to watch people struggle with their response (yes, that's not nice for me to say, but it's true)."
- "It's nothing I'm embarrassed by."
- "My kids need to see me talk about Down syndrome because it's part of our lives but just not that big of a deal..."
- "The more I talk about it to strangers hopefully the more comfortable [my children] will be the next time they have an encounter."
One father, who asked to remain anonymous, has a child with Down syndrome and feels every exchange is an opportunity to educate and show tolerance and understanding.
"I think [parents of children with disabilities] can be way oversensitive," he says, "and I object to any sort of defensive gesture. People are genuinely good and they want to connect and learn more, but taking a defensive posture or reaction... could waste a perfect teaching opportunity for us to politely educate others."
His experiences have included times when individuals have approached his family and used outdated language, for example, "Your Downs kid is so cute," when people-first language is more appropriate and respectful (child with Down syndrome vs. Downs child).
"Had I replied in a defensive way, the conversation would have been shut down," he explains. "Instead, we need to keep the dialogue open and ignore the politically incorrect language and looks, because we can then weave the appropriate language or education into the conversation and make this a teachable moment.
Anonymous Dad adds: "Of course, I wouldn't tolerate someone calling my child the 'R' word or reacting to us in an intentionally rude manner, but this has yet to happen. Instead, people are staring because they are curious and they often don't know what to say or how to say it the right way."
What's the best advice?
"I'm constantly amazed at the people that approach us with genuine compliments, thoughtfulness and questions," shares Anonymous Dad. "Just be friendly and you will be overwhelmed with the random kindness of strangers at the most unexpected times and places!"
Share with us!^ How do you feel when you see a child with disabilities? Have you ever caught yourself staring? Have you had someone ask about your child's perceived differences? Share your experience in the comments below!