The tempo of our day-to-day life quickened quite a bit this school year, and now it's more or less all systems go: Class is back full time, and we've returned to the extracurriculars that bring my daughters joy.
Dance. Piano. Soccer. Swim.
Each activity comes with new lessons and the possibility of new friends.
Lately, my daughters have been receiving sweet notes from classmates and teammates wanting to play after school. After a year of empty calendar squares, it's been refreshing to fill in those boxes with park playdates.
When the anticipated day finally arrives, we're off — piling into the family van and whipping out of the neighborhood. Yep, that’s us with the broken passenger-side door handle and broken sliding door, heading out for that pivotal first-ever in-person meet up.
As we roll into a handicap spot, we see our new buddies on the jungle gym. My two younger kids burst out of the van like snakes from a can. I lean out the driver’s side door and wave to the parent across the way. “We’re coming!” I yell. “It’ll be a few minutes!”
I raise the trunk and pop the wheels onto my oldest daughter’s wheelchair, then lower it slowly to the pavement. Buckle, buckle, buckle. I secure her into her chair. Click go the brakes, and off we go — toward people we don’t yet know to widen and possibly deepen our friendship circle.
After cordial introductions, the parents and I begin chatting about life and school. It feels so good to connect with new people again, and I get lost in the chatter. Until, out of the corner of my eye, I see a few children approaching my 9-year-old, who has Wolf-Hirschhorn syndrome (4p-), a chromosome deletion that impacts 1 in 50,000 births.
Carefully and quietly, they come near.
Curious and searching, they inch close and stand.
After a dozen such encounters, I know what they are waiting for. After a long while, one of them asks, “Can she talk?”
At first, my heart tumbles because this question is directed at me, and not my daughter. But I’m an eternal optimist, who once was a kid, and who has kids, and who knows kids. And I believe deep in my bones that although they ask “Can she talk?” what they really mean is:
“Can she talk to me?”
A spark flickers inside my heart. “Yep!” I say. “My daughter talks in several ways. She uses gestures and expressions and a PODD book to share her thoughts and ideas.”
Their eyebrows lower and furrow. My answer doesn’t add up. “Can she talk with her mouth?” one of the children asks.
“Sometimes,” I say. “She often says Mom or Dad or up or yeah.”
They wait for evidence of this. My daughter doesn’t speak much outside of our home, and she doesn’t in that moment. They look back at the playground.
“What are your names?” I ask, trying to give the moment some room to grow. We exchange those, and I add, “It’s so nice to meet you two.”
Then poof — they are gone. The space between my daughter and her peers grows by the second. “Wanna get out and walk a bit?” I ask my daughter. She nods.
Snap, snap, snap go the buckles. Then she powers up her legs, and I help her step off of her chair platform and onto the mulch. We walk together into the action, closing that physical gap, putting ourselves out there, again.
Me wishing for another chance at hello. A moment that goes beyond that simple, basic, barricade of a question. Can she talk?
Talk simply doesn’t account for the myriad of nonverbal articulations that are part of the communication continuum. Yet, these nonverbal expressions are things that most kids on the playground can easily recognize and understand.
A drop of the chin for yes.
A sharp turn of the head for no way.
A reach-and-grab that says I want that right now.
A head-to-head press that says I love you so much.
Each is language. Each has meaning. But are these things talking? Does it matter if they aren’t verbally spoken?
I can tell that in our park encounters, the adults responsible for these curious kids want very much for their kids to say the “right thing.” But maybe, even more so, they don’t want their child to say the “wrong thing.” I see the nervousness in their faces and feel it in their body language.
This terrain seems incredibly tricky for a family who doesn’t know a disabled person. Our family is rare in our community, and augmentative and alternative communication (AAC) isn’t something that can be fully explained in a 30-second casual exchange.
So how can we bridge the gap to hello? How can we take a step toward friendship?
I’m an uber fan of The Nora Project, a school-based program that promotes disability inclusion by empowering educators and engaging students and communities. My oldest daughter has been involved with TNP for several years, and I have seen first-hand what a difference leaning in and learning makes.
When we bring my daughter’s communication tools to our Nora playdates, her friends patiently wait to hear what she wants to share. And when we see our Nora friends at parades, grocery stores and ice cream shops, they always smile and say hello. Those universal pleasantries mean the world.
I know that it can be scary to make a gesture of kindness toward someone when you aren’t sure if or how it will be reciprocated, but...
What do we risk in making eye contact?
What do we risk in saying hello?
What do we risk in smiling?
What do we risk in sharing our name and asking someone else's?
If a disabled person and their family put themselves out there to be a part of the community — especially during these uncertain times — can you give them a chance to show you who they are and what they have to say?
Can you help your child take a step forward, instead of back?
From my many years of exposure to augmentative and alternative communication, I assure you: The best and only way to show our kids how to communicate with others is to model it.
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