I’m the father of a child who has a rare chromosomal disorder, trisomy-18. It affects about one in 5,000 births and leaves children with profound mental and physical disabilities. Life expectancy is harrowingly brief; some 90% of affected infants don’t see their first birthday.
There are many reasons why it’s important for people to know about this syndrome — to encourage more research, advance better policies for families coping with it, to “raise awareness.” But when I consider my daughter Esprit, I’m interested in a specific kind of awareness, the kind that helps people feel comfortable interacting with her. Medical details and statistics don’t put anyone at ease around a severely disabled child. But a parent’s perspective might.
Chances are, you and your children will encounter Esprit or a child who is similarly disabled at a store, or in a park. Your child will be struck by Esprit’s appearance. Typical for trisomy-18 kids, her head is small, her eyelids droop and her ears are low-set. Add the wheelchair and the braces on her feet and midsection, and you’ve got quite a sight. Older children pointedly refrain from staring (usually with a furtive peek or two), but younger children gape uninhibitedly. Embarrassed parents will try to distract their child, or drag him away, probably delivering a “don’t stare” lecture once out of sight. But you can’t blame a 4-year-old for staring at a child who looks different. His curiosity is natural.
Staring at people feels wrong because it’s how we respond to an object — a skyscraper, or a waterfall. When we look at people, we usually send a social signal — a smile, for example — that acknowledges their humanity. Staring isn’t staring if you’re smiling. Or waving. Or if you say hi. That turns staring into a bid for interaction. So don’t try to stop your little one from looking at Esprit. It probably won’t work anyway, and it may be interpreted as indicating there’s something dreadful or forbidden about her. Just tell your child to wave. And don’t worry if he asks an awkward question, like, “Can’t she talk?” That’s a welcome chance for us to introduce Esprit.
What if you’re planning a social event and it’s natural to invite a disabled child? Maybe your daughter wants to host a party for her swim team, which includes a child with autism. Or maybe you’ve asked new neighbors to come to a cookout, and then you learn they have a child like Esprit. I started to see the discomfort people feel in socializing with disabled kids when Esprit reached 6 months. Until then, my wife was invited to playdates, where she and another mom drank coffee while the babies gurgled on the floor. The invitations stopped when the other kids could sit up, something Esprit wouldn’t do for years.
Kids with disabilities want to socialize; the need to affiliate is deeply human and present in all of us. Children like Esprit may not be able to participate exactly as typical kids do, but who cares? My wife would not have been indignant if a playdate had included more babies, so the typical kids could do typical kid stuff while Esprit watched. Just ask a disabled child’s parents whether the planned activity will work for their son or daughter. If an adjustment is needed we can figure it out together.
In another common situation, you may witness a problem caused by a child’s disability. For example, my family might leave a picnic because of Esprit’s sunlight sensitivity. What, if anything, should you say?
Sympathetic acknowledgment of a nuisance like leaving a picnic early is normal, as much when the reason is disability as when it’s a cloudburst. But don’t let simple sympathy edge toward the tragic. Our family routinely accommodates Esprit’s disability, and to us, it’s just the background noise of life. In the foreground, Esprit is happy, and we’re happy to have her around. So don’t make a big deal out of an annoyance with a portent-filled comment like, “I don’t know how you do it.”
In fact, focusing on the commonplace is a good idea if you’re worried about saying the wrong thing. Remarking on the daily practicalities of Esprit’s life won’t make us blink, but we’d rather you didn’t bring up the long haul, even with compliments like, “God only chooses special parents to have someone like Esprit,” or commiserations like, “Sometimes, it all just seems so unfair.”
I get it. Esprit can bring to mind big-picture questions about blind fortune or the mystery of God’s plan — something seemingly terrible has been visited upon an innocent child. But those are the thoughts you shouldn’t share with us. For parents of a severely disabled child, the big picture is dominated by a future cataclysm. For my wife and me, it’s that, although Esprit has lived nearly 15 years, we will likely survive her. For other parents, it’s that their child will likely survive them. We would rather consider the big picture at times of our own choosing.
In the end, the platitude “we’re all the same” applies when it comes to interacting with severely disabled children. They desire the human contact that most of us take for granted. So increase your awareness, by reaching out to one of them.