The child, merely months older, is already a stark contrast to my son, Charlie. He can ride a bike by himself nearly a block from where his mother is standing. He can ask questions. He can comment on what he observes. He is, developmentally, where Charlie could be if not for that one extra chromosome.
My husband stopped to wave hello, heading to a dreaded hair cut appointment with Charlie, who has Down syndrome and a horrific sensory reaction to haircuts — as if every snip is cutting through his flesh.
“Hi, boys!” My husband called. “Hi, Charlie!” the boys chimed in unison, recognizing our son in the back seat. Then one rolled his bike up to the car, straddling it with his feet on the pavement, balancing.
“I’m really sorry Charlie was born with bad stuff,” he said to my husband. My husband doesn’t remember if he even replied. He drove off, feeling the weight of sadness, helplessness and the beginning tingle of anger on his chest.
We’ve had minimal interactions with these neighbors. They once sent their babysitter with their boys to attend Charlie’s birthday party. They’re good people, but they made a huge mistake in how they explained Charlie to their children — because how else would you explain a 6-year-old’s use of that phrase, “bad stuff”?
I haven’t reached out to the mom yet because I can already feel the tense wave of embarrassment, the scramble to explain or apologize. And I’m just not up for it. It’s exhausting to be the watchdog of other adults’ language about my son’s one extra chromosome.
So what can I do instead? I need to better manage how Charlie’s disability is explained to his peers. I need to do a better job not assuming people will get it right — because for goodness sake, my husband and I didn’t know how to explain it ourselves for even the first year of Charlie’s life. It takes deliberate thinking — and now I realize it also takes deliberate outreach.
Some parents will say explaining a child’s disability only draws attention to it, but I think the benefits outweigh the risks. This is what I want to tell every child who ever meets my son (or their parents when discussing Charlie).
Yes, having Down syndrome makes Charlie different from most other kids. But do you like trucks? Mickey Mouse? Ice cream? So does Charlie! He is a little boy who loves running and playing and laughing, just like your child. Let’s talk about the things our kids have in common, because I promise, there’s something!
Characterize differences with facts, not emotions
As Charlie’s mom, I’ve cried my share of tears over the challenges he will face — but I’ve learned that Down syndrome is just a tiny part of who he is, and that every child faces challenges one way or another. What matters is the tone we set as parents — as adults who have the awesome responsibility of introducing our children to what differences mean. Whether a difference is a pair of glasses, an autism diagnosis or another parent’s disinterest in executing any of the 1,112 pins on her Pinterest board. No two people are the same, thank God.
For Charlie, Down syndrome means he may need extra help doing some things that come so easily to another child. But guess what? Some things come very easily to Charlie, like talking to someone new and getting even the crankiest curmudgeon smirking and snickering over his antics and grins. Charlie loves life and he loves people. He doesn’t have the common social hang-ups the rest of us may battle: insecurities, shyness, nervousness around new people. He just goes for it. Charlie is all in.
Let’s practice patience
Is it frustrating when Charlie isn’t listening to the teacher? Absolutely. But it’s also a tremendous opportunity for his classmates to learn how to adjust in the real world when things aren’t going smoothly or quietly or perfectly. If kids can’t start to learn how to help each other in kindergarten, we’re doing something wrong. Can you help Charlie when he drops something? Can you remind him where his water bottle is if he forgets? Can we teach our children (and our adults) to demonstrate just a little more patience? Because he has every right to learn alongside his peers just like your child.
Please teach kindness
Every scenario in life could benefit from more kindness. I know how confusing it can be when everyone seems to “get” something and Charlie just doesn’t. But what if we all learned to just stop for a minute and sprinkle some grace on the situation? Last year, as Charlie lined up with his class for a music performance, a handful of girls were mothering him — and also giggling at how he said their names. “He’s so funny! Listen to how he says MY name!” they giggled back and forth. I know they didn’t understand, and hearing Charlie’s often garbled words can sound funny to a 5-year-old. But my heart broke a little that night.
Got questions? Just ask!
My husband and I didn’t get it right in the beginning and we don’t expect others to, either. I mean, what I remembered learning about chromosomes in school was basically zilch. What we expect is respect. The moment we run into each other may not be the best time to ask detailed questions, but I promise I want to answer all your questions. The best approach is to first ask if it’s a good time to talk. I will be as honest as I can be while still respecting his privacy.