3 Moments That Sum Up How Kids, Teens and Adults View My Son’s Disability


IMG_4809 My son, Elias, wheels joy into the angst and insecurity of shopping malls and school hallways.

People turn at the sound of metal and rubber stalking them. They’re surprised by a small blond boy with a walker. And their faces change. They brighten.

Sometimes their smiles are more nervous than joyous, but even these nervous smiles offer a flicker of light.

***

Three teens, dressed in black with chains, multiple piercings and elongated ear holes, go out of their way to hold the doors to the mall open for Elias.

They wait patiently and watch Elias with delight as he maneuvers his walker not around but over every crack and bump in the sidewalk. He calls them speed bumps and will go out of his way to find uneven ground.

Like the teens holding the doors, Elias will not take the straight path.

And by the way they smile, I see the little boy in each of them, instead of their darker exteriors, a look that frightens me because it’s so different than my own.

I don’t know why we fear what we don’t know. Is it a genetic trait passed down from our ancestors to keep us safe from Saber-toothed jaws? Are we socialized to respond to our own kind?

***

Two first grade boys sit in the hallway and watch Elias and me as we arrive late for morning preschool class. One of them stares at Elias’s walker with a quizzical look. The other one smiles.

The skeptical one asks, “Why does he use that?”

“To help him walk,” I explain.

“He can’t walk?” the boy responds.

“No, not yet.”

The smiley one says: “When he’s a kid he’ll probably be able to walk because he’s just a pre-schooler.”

I smile, “We hope so.”

“Why can’t he walk?” asks the boy who has yet to smile.

“Well, it’s kinda complicated. His brain has a hard time talking to his muscles.”

As I say this, Elias goes over to the boys, lets go of his walker, holds onto their chairs and says, “Hi!!!!”

The smiley one says,  “Hi!!!! What’s your name?”

“Yia”

“His name is Elias, “ I clarify.

The boy introduces himself and his friend.

“Can he walk without it?” asks the quizzical one, as Elias cruises from one chair to another.

“He can do what he is doing now, hold onto things and cruise, but if he lets go he loses his balance.”

“Does he fall down?”

“Yes, he falls down a lot — but he’s pretty tough.”

Still no smile. Still not sure.

“How does he get around at home? On his knees?”

“Yeah, he still crawls.”

The smiley one asks Elias in a sing song voice, “Can you show me how you crawl?”

Elias, as if we practiced this, moves to the floor and crawls around the corner of the hallway.

And the skeptic finally smiles.

Both boys get up to follow Elias.

The smiley one reaches his hand down to Elias and says, “Here, I’ll help you up.”

As Elias stands and struggles to find his center of balance, the boy says to me: “I can tell he has a hard time walking”.

I give Elias my hand, and together the boy and I walk him to his classroom.

The skeptical one stands behind us with a smile. It is not as warm and open as his friend’s, but in the space of a small conversation he moved from scared and unsure to OK.

That’s progress.

I think it’s easier for kids to make these shifts then it is for adults who live within facades of political correctness, too afraid to admit they aren’t always comfortable with what they don’t know. Terrified of giving the wrong reaction, we sometimes avoid situations with uncertainty. I know I still gravitate towards people who look and act like me. So much so that my own child can scare me.

But he won’t let me hide.

And I love him too much to stay in my own tent and avoid the unknown.

So we travel.

The truth is, I sometimes find the general tasks of parenthood — waking, feeding, changing, responding, comforting, teaching — more challenging than visual impairment and cerebral palsy.

Sometimes preparing a healthy breakfast every morning without fail, the relentless routine of daily care, the drudgery of endless repetition, is worse than walking through the mall with a legally blind boy and his walker.

I revel in the unexpected joy we give and receive.

***

A man with temporary crutches waits at the elevator with Elias and me. He smiles as Elias bounces and says, “abater” over and over again.

“Is he yours or are you watching him?”

“He’s mine.”

“He may have challenges, but he’s awfully cute.”

“Thanks.” I smile.

And then this stranger in the mall gives me this gift, this way of asking Elias’s story, which breaches the perceived distance between us all:

“I know I have a lot of challenges. What are some of his?”

Follow this journey on Following Elias.

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