How My Neurodivergent Son Taught Me To Move Through Life In A Wholly Different Way.

2022-06-15 14:35:35 By : Mr. David Yu

I’ve learned, and continue to learn, over and over, that the trip can either be led by love, or by fear.

For a large part of last year, there was an 8x10 color photo of a human heart hanging on our living-room wall, with a construction paper arrow pointing to a large red button taped just above the aorta. Next to the button, written in my then 8-year-old son’s careful print, were the words: “Please Do Not Push.”

I daily walked past the glistening arteries, and the shiny bulbs of the ventricles, barely registering it, until my mother spied it over my shoulder in a Facetime call.

“What is that?” She squinted. “Is that a pot roast on the wall?”

It was not. But it very well could have been. Since becoming a parent, my apartment has been adorned in all manner of random objects and pictures. At various times over the years there have been tiny hand-drawn fire alarms taped next to toilets, and actual, eBay-purchased industrial fire alarms hanging crookedly above doorways. There have been copies of the Wikipedia logo tacked to various doors. And there was once a small metal shower head duct-taped to a wall in the middle of the hallway, as if one might pause mid-walk to the bedroom to hunch down and condition their hair.

My son is on the autism spectrum. And while this means all sorts of things for our family, it also means I once put together an Easter basket that contained — along with the standard chocolate rabbit — a dollhouse-sized washer and dryer and small bag of rubber leeches.

It is not uncommon for people on the spectrum to have a lot of (in autism parlance) “special interests.” For some kids, these interests can lead to a lot of rather unusual home décor choices and gift requests. I remember one year chatting with a dad from my son’s school about what his child got from Santa.

“Oh, a stop sign. He was ecstatic. What about your boy?”

And I vividly remember the year my son was 6, when his most cherished Christmas gift was a set of empty Arby’s fast food containers. I made a special trip to the local Arby’s on Christmas eve to obtain them.

“No, no, I don’t want any food in them,” I told the teen behind the counter. “I just want the boxes.”

He blinked at me and hesitated, as if it was against their protocol to bestow any cardboard products that didn’t contain a French dip. But I simply smiled politely and stood my ground, until he shrugged and handed the items over.

Now, when I remind my husband of this, we laugh at how odd it must have seemed to the guy. But there was a time when I would not have been able to laugh at this Arby’s encounter. There was a time when the whole exchange would have turned my brain into a double roast beef.

One of the biggest, and in some ways hardest lessons for me as a parent, has been accepting that my parenting experience is often not going to look quite how I had envisioned it. This is true for all parents, to a degree. (They say if you want to make God laugh, make a plan. I say if you want to make a small child laugh, tell them their desire to fill your pockets with pasta does not align with your vision of parenthood.)

But if your child is born neurodivergent, parenting may look very different from what you had pictured. There’s that old essay “Welcome to Holland” that likens having a child with a disability to thinking you’re flying to Italy, but instead finding yourself touching down in Holland. And while I do relate to the author’s analogy, I would add that it can sometimes feel not just like you’ve landed in Holland, but that you are in Holland and everyone is riding pink unicycles and wearing Beethoven wigs. Because not only is it not really what you’d pictured, it’s unlike anything you’ve ever experienced, really.

At my baby shower, when I was unwrapping Boppy pillows and Baby Bjorns, I could never have anticipated that walking my child to preschool would involve taking photos of every fan and air conditioner along the route. I could not have imagined I would one day watch a documentary short called How It’s Made Ketchup so many times that I would be able to rattle off the ingredients for the condiment as easily as my own address.

In those early days of my son’s diagnosis, I took those Frigidaire pictures, and I watched the industrial mixer stir in the onion powder and tomato paste, because these things made my son happy. It is what he enjoyed. But my insides felt as though they were also being dumped into an industrial mixer. Worry churned through me; all these “special interests” a glaring reminder of my son’s differences. And I did not want to be different. I wanted to be like all of the other parents, doing all of the “normal” parent-y things.

I would feel myself shrink in disappointment when he showed no interest in “typical” kid things, like Batman or the Hulk. And like a lot of kids on the spectrum, my son would more happily eat a bowl of his own teeth than sit through a rendition of the birthday song. So when we’d attend birthday parties and the cake and candles would roll in, we needed to discreetly roll on out. I’d take him to a sing-a-long, and while other kids were enchanted by the bubbles, my little guy wanted a good look at the bubble machine.

No, I’d think. He should want the bubbles, not the machine. He should delight in the birthday song. He should be invested in the tale of a man who dresses like a bat in order to avenge his parents. He should care about this guy who turns green with rage and destroys his own slacks. Why? Well, because that is what everyone else wants. And shouldn’t he want what everyone else wants? What did that mean if he didn’t want what everyone else wanted?

I did not know. And that felt scary.

When my son was 5, he wanted to be an elevator for Halloween. So I spray painted a box silver, attached some numbers, and then my husband and I dressed as the elevator operators. The following year he wanted to be a fire alarm. The elevator box was repurposed, spray-painted a bright red, and my husband and I dressed as the flames. When I look back on photos of this, I am seized with gratitude. Because as scared as I sometimes felt back in those days, I’m so glad that some part of my heart had already decided that whatever my son was going to become, we were going to be there along the way, supporting him and loving him, whatever that looked like. Even if it sometimes felt confusing. Even if we sometimes felt left out of “normal” parenting. Even if it meant riding a pink unicycle.

Being his mom has taught me to move through life in a wholly different way. I now delight in details of my surroundings that were previously invisible to me. The old fire alarm bells attached to so many of the businesses in Brooklyn. The big whoosh of the fan blades outside the dry cleaner. The way the number of a floor is often painted on the wall behind an elevator, visible only when the door is sliding open. My son pointed this out to me one day — the roughly stenciled 3 in the sliver of darkness, hiding just out of sight, like a little surprise ghost waiting within the walls. Spying it filled me with a kind of wonder, with a sharp recognition of all the different ways one can see the world.

My son does now enjoy a lot of “typical” stuff. We play with Minecraft figurines and Nerf guns. He loves Godzilla and Ghostbusters — he’s basically a fan of any creature, be it marshmallow or amphibian, that can knock through Manhattan like it’s a stack of paper cups. And like many little boys he is happy to turn sticks into laser guns and logs into spaceships.

He also still likes to turn accordion closets into pretend elevators. And this year for Easter, his basket contained a chocolate rabbit, a security guard badge, and a full color book on roller coasters. That old worry — that we are not like everyone else — it no longer plagues me. We absolutely are not.

This is not to say my fear is gone. My parenting journey is still unlike anything I ever could have expected, with twists and turns I know I cannot anticipate. But I’ve learned, and continue to learn, over and over, that the trip can either be led by love, or by fear. Being a parent, no matter the child, is sometimes just incredibly scary. Like the human heart taped upon my wall, it sometimes feels as if you’re moving through the day just begging the world not to push the button. Hoping you are doing all of the right things by your child. Hoping the world is treating them with kindness. Hoping you have instilled in them the instinct to return that kindness.

The reality, though? That button was pushed long ago, the moment I first held my son in my arms. It was pushed, and shall forever remain stuck. A constant, eternal, pressing on the heart.