Unsung Heroes

We moved to New Hampshire almost nine years ago, and I can’t say I was very excited about it.

I mean, I don’t ski. I don’t hike, and I try to get out of any and all camping trips. In fact, my favorite activities are shopping and eating, and our little town is notoriously short on fine dining and glamorous malls. We did just get a Whole Foods, though.

But people, it’s rural here. Bring-in-your-birdfeeders-because-of-the-bears kind of rural.

Don’t-let-your-dog-out-at-night-because-he-could-get-eaten-by-a-coyote kind of rural.

I just saw someone ride a horse down my street. I’m not even kidding.

I am glad, however, that we don’t live in Georgia.

I’ve kind of stayed off of Facebook for the past few days because I’ve been nervous I would open my news feed and see that freeze-frame of the little boy wearing khaki shorts, bent over one woman’s lap while another woman held a wooden paddle behind him.

Apparently, corporal punishment in public schools is legal in Georgia.

I did not watch the entire video, because after about three seconds of hearing him scream, I felt as though I could not breathe. The hair on my arms stood up and my granola bar roiled in my stomach.

I closed the window on my computer as fast as I could, and so I’m not going to pretend I know the whole story. I know there is talk of truancy and suspension and spitting and rules.

His shorts were so teeny. They had pockets.

Would I let any of my own children experience corporal punishment? Of course not. I would have grabbed my kid and run right out the door like my feet were on fire.

But I cannot be the judge and jury. I am sitting here, in my comfortable house drinking coffee out of my favorite mug, watching my neighbor trot past on her horse. I do not have to worry about truancy, or jail time, or whether or not my son’s going to get spanked by the principal today.

I can pretty much guarantee this: every mother and father of a special-needs kiddo watched that clip and thought right away of their own son or daughter—the ones who struggle to stay regulated all day and make good choices and exercise big strange ideas like cognitive flexibility and expressive language and impulse control.

Over and over, he cried for her. Mommy, Mommy.

There are rules, I get that. I like rules. Rules are good.

In fact, rules make my son Jack feel safe. They provide him a framework in the middle of autism’s chaos.

Unfortunately, there are times when great big ugly feelings like anger and fear and resentment and jealousy balloon inside of Jack, and they squish the rules right out of his brain like a hippopotamus driving a Volkswagen Beetle.

And then his body begins to take over, and it tells his brain to be very, very afraid. It tells him to scream and swear and kick and fight.

I spend approximately ninety-six percent of my time trying to figure out ways to keep Jack’s body calm so his mind is open for learning.

I spend fifty-seven percent of my time trying to crawl inside of his mind and figure out what he’s thinking about and how he feels and why, for the love of all things holy, he has to shout the f-word every time he sees Elmo on the television.

And the other thirty-three percent, I spend trying to decide if his behavior is jerky, or autism, or jerky autism. And then I try to decide on the appropriate consequence.

I make him shoot a basket every time he says a curse word.

I restrict his screen time if his homework isn’t done well.

I look in his eyes and hold his hands in mine and remind him to quiet his body the way his preschool teacher taught me almost nine years ago.

Quiet body, Jack, quiet body.

Seeing this story online made me upset, and confused, and sad, and angry. But it also served as a great reminder of the many people in our lives who advocate for my son every single day.

We’re in our third week of autism forever light it up blue awareness month. Everywhere you look, people are talking about autism. It’s beautiful. I love it. It makes me feel happy and hopeful and light.

But I don’t want to talk about Jack and his spectrum disorder any more. I want to talk about the teachers and paraprofessionals and principals and vice principals who gently nudge the hippopotamus back inside the tiny car, who look at this boy and see through the behavior and the spitting and the screaming.

Recess monitors, case managers, behavior specialists.

Speech and occupational therapists and guidance counselors.

People who serve him his pizza on Monday in the cafeteria, and drive him on the bus at the end of the day, and wear purple shirts with puzzle pieces to the annual fundraiser.

They share my burden, they join in my prayers.

They show up every day, after feeding their own babies and packing lunches and rinsing coffee mugs, and they remind him to sit in his seat and to finish the worksheet. They are tireless.

They know there is no such thing as one-size-fits-all when it comes to curriculum or consequence.

They are the unsung heroes of the autism movement.

I have so many stories I could tell you.

I could tell you about the bus driver Jack had in preschool who knit him his own blanket he could keep on the bus for the cold winter mornings. It was blue with a green border.

Or the second grade teacher who taught him all year long with a growing belly, and despite the tantrums and the setbacks, the autism and the anger, this announcement on a springtime afternoon.

Good afternoon, students. We’d like to let everyone know that Mrs. Thaler had her baby today! His name is Jack. 

Or the team who has stood behind him for the duration of this tumultuous sixth grade.

I promise you, we are not going to give up until we figure out what’s wrong.

Or I could just share a story about glasses.

See, my son Jack, he never really paid attention during his eye exams. He didn’t sit still in the big chair, and he didn’t listen when the doctor prompted him to read the letters on the chart.

Then one day, when he was eight, he did pay attention. He did what the doctor asked and he covered his left eye and read all the letters one by one.

A, E, S, T

Then he covered his right eye with the black plastic thing that looks like a weird spoon, and he started to get agitated.

No, I can’t see I need my other eye. For my other eye. To see.

I started to sweat, right then and there in that small dark room.

Turns out, all this time, his right eye had been doing all the work for his lazy I-want-to-sit-on-the-couch-and-eat-potato-chips-all day left eye. He was legally blind on the left side.

The doctor prescribed a patch for three hours a day, and glasses to wear all the time.

Jack was, uh, not interested in glasses. As in six-hour-tantrum not interested. For the entire afternoon, he raged and shrieked and cried, and when he went to bed, he pulled his weighted blanket up to his chin and chanted tearfully, “No glasses. No glasses. I just want to be normal. Normal.”

I wandered back downstairs, exhausted and tearful, like I always do after one of Jack’s marathon tantrums. I e-mailed his third grade teacher to update her, and then I hopped on Facebook, and I saw this message she posted.

“To all the teachers and staff, please wear glasses tomorrow if you don’t regularly do so. It is a for a great kiddo who might need some encouragement as he faces a new zig in his zag:)”

On my knees, I pray to my God that the little boy in the khaki shorts one day meets someone who will speak on his behalf and show him what he can do instead of spitting and hold him and love him and teach him and shelter him.

In the meantime, I’d like to thank each and every one of you who do that for my own son.

His name is Jack.

Do you have an unsung hero in your child’s school? Please, share in the comments or here on Facebook.