Autism is the Cinnamon in our "Makaronia Me Kima"

Some have reached out asking why I’ve been silent on autism awareness day. The truth is, it has not been a purposeful silence – we have been ridiculously busy and we just moved – but I’ll admit, with three children on the autism spectrum I felt pressure to do something for the sake of doing something and that’s when I reevaluated the “why.”

A lot of themed “days” and “months” put the onus on the ones struggling to come out and do a jig like some kind of Epcot center, around-the-world taste test sampler platter of struggles. Like a performative show-and-tell allowed at a certain time, when the moon is in a specific zodiac or critical degree, and the stars are aligned and shooting blue light and doing synchronized puzzle piece formations.

But the issue is that once the display is finished and the designated time slot has passed, autism is expected to go neatly back into its box in the back of the closet for the rest of the year while the rest of the world goes on business as usual.

But it’s not just that. I don’t believe autism is something that can be compartmentalized into “day” or a themed month or year.

Autism simultaneously makes time turn inside-out and upside-down on its axis and then stand still; spin in circles, stand on its head and flap its hands.

Autism awareness is being twirled and squeezed and compressed and integrated and disembodied and re-imagined – then stuck to yourself, then ripped from yourself – like a piece of taffy being pulled and stretched and obliterated then folded together over and over again.

This has been the first year where “autism” and “our family/lives” have existed together, as one, and not as two competing trains on parallel tracks.

This is the first year where I haven’t felt like pushing. I haven’t felt like selling merchandise, promoting my books, or having a fundraiser and donating to the proper cause, or waiving my arms frantically to signal that we are drowning.

Because this is the first year we’ve begun to tread water and even realize we can float.

This year is the first year we are just going to be – a big fat autism family – like we always are, day in and day out.

It’s like asking: what do you cook on holidays? Your answer will vary widely from what you cook everyday. And if you ask an autism family what they cook on holidays, it’ll be what we cook everyday: microwaved Dino nuggets and Gogurt pouches with a side of of Dorito dust garnish.

Autism isn’t a group holiday, it’s our everyday.

My Nona used to make an easy everyday dish, called Makaronia Me Kima (noodles with meat sauce). But she made it very rustic, as an easy, throw-together dish. Lots of families have an easy meat-sauce they have adapted to basic daily cooking.

While browning the meat, she added the usual suspects: garlic, onion, olive oil, oregano. But then, to my surprise, she snuck in a dash of cinnamon.

“Cinnamon?” I was in shock. It seemed so out of place and quirky for a typical Greek dish.

“It adds character…but nobody will know where it's coming from,” Nona said.

But that dash of cinnamon was the sine qua non that brought out all the other flavors. The depth of the garlic, the breadth of the onion, the sweetness of the tomato, and the tang of the bit of milk.

I am absolutely certain that if that dash of cinnamon wasn’t sprinkled in at the last minute, there would be no Kima – at least not in my memory.

To this day, when that cinnamon hits the browning of meat, I am brought back to her kitchen. I am reminded to always add a dash of the unexpected, and take chances on the one thing you are almost certain could never fit.

We could all benefit from allowing that unexpected spice into our everyday kitchen, and not just to our holiday kitchen. It brings out the authenticity of our true selves.

Autism is our cinnamon in the Kima – the wily spice, in the everyday grind.

The necessary, unnecessary, conspicuously incongruous spice. The strand of copper electrifying everything we do.

The outlier that makes everything come together – as though it was the plan all along.

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Yesterday someone said to me: “I know you won’t be offended by this, but my friend asked me, ‘How does a person end up with three autistic children – three?’”

I paused. And while I kept a straight face, it felt like a sucker punch. Or like someone deflated one of my lungs, or kneed me in the groin.

Mostly it knocked the wind out of me because I finally heard the words spoken that everyone thinks but does not say.

Something about this quarantine, and quarantine with three autistic children who have been torn from their routine, it’s like a pressure cooker. Or you can look at it like a torture chamber where you’re surrounded with fun house mirrors. And every direction you turn you have to face a new angle of yourself.

And I’ve finally come to that place. That pause in my life where there is nowhere to turn to except to the self, the 24,839,230,232 versions of myself reflected ad infinitum. And every time I raise a hand, I’m raising a hand to myself.

My whole life, my identity was tied to what I could accomplish, what I could become. How I could please others. And I did well in this role on the outside, burning myself out, whittling myself down to a certain weight, getting the grades, the degrees, the jobs.

And then I was given a curve ball – or, three – and I realized that my greatest creations, my children, my flesh and blood, would not accomplish (on the trajectory the world had set out for them), become what others (and me) had imagined, nor would they please others (according to societal expectations). Suddenly I could no longer be the best, or good, or even D-. My façade had cracked, and the person I had built up to collapsed.

And then a riot broke out inside of me, and it felt as though my actual skin was pulling away from my bones in different directions.

I could deny there was anything out of the ordinary and go about my vapid, people-pleasing life, or I could embrace exactly what was happening and literally unzip my skin and step out of myself and into a completely new raw world.

A world that required the an unsheathed, uncensored, super concentrated version of myself, to survive.

A self made of scar tissue, sinew, and a slight bent toward the light despite being nearly incinerated.

Like a desert bloom.

In case you’re wondering, I’ve unzipped.

Sometimes, after an impossibly unhinged day of, perhaps my son punching himself in the face, or scouring shit off a mattress with bleach and a scrub brush, or another friend or family member proudly posting milestones of their neurotypical children, I find myself exploring one, specific, exquisitely disgusting idea:

That I must have done something to cause this.

Or worse yet: That I must have done something to deserve this.

Like unearthing a grave just to see the rotted, horrifying thing in secret. I hover over that grave like a displaced ghost at 2am during a full moon when the fan is making creaking noises above my head, bound to it. Incapable of closure. Adorning it with flowers.

Because we know that’s what people truly think but don’t dare say.

Because people treat autism like a death.

And then they sometimes say things like: “I’m so sorry,” or “I couldn’t imagine,” or “I don’t know how you do it,” or "Thoughts and prayers," and go back to scrolling their feed, and privately let out a sigh of relief that they have been spared from this statistical calamity.

"How do you have three kids with autism - three?" (That's like a triple homicide, right?)

I chewed on that question for a full day, extracting every flavor, the gristle, the fat, the red center. And then I came to the conclusion that I do blame myself. I blame myself as a kind of dark ritual to relieve my pain, like cutting, or emotional bulimia.

I think what makes it so difficult to grieve and find closure is the not knowing. The open-ended what ifs, the infinite possibilities of what could have been, and what will (or will not) be.

Knowing that there is no “cure,” no inoculation, or respite or end, feels a lot like how this quarantine feels. A long drawn out death dance. An open-ended sentence of eternal isolation. Constant fear and anxiety. A loss of freedom. A loss of innocence. A changing of the guard. Things will never be the same.

The truth is myself really has nothing to do with this.

And that’s the point.

And that’s the beauty in all this.

My kids saved me from myself.

Loving them is the easy part.

Loving myself is the most revolutionary and brave act of my adult life.

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When the mechanics of the everyday, like a mouth that doesn’t speak, grinds to a halt.

Today, at the grocery store, what made me cry wasn’t:

The empty glass doors with no milk left, one shattered and taped up from people pushing to get theirs.

The elderly woman pulling her hand into her sleeve and eyeing an Asian woman as she passes her with her cart.

The errant lettuce leaf and rows and rows of empty fruit bins, streaked with rotting juice.

The glaring emptiness of bleach, baby wipes, children’s medicine, baby formula, gouged like eye sockets.

What made me cry was:

A mother holding up a 12-count box of Crayola Metallic Crayons up to her child, who couldn’t have been older than 2 or 2.5, pointing to a crayon in a row and asking him:

What color is this?

“Silver,” he said.

“No,” she said. “That’s GOLD. How many times have I told you this, why can’t you get this right?”

She put the crayons back.

“We’re not getting these.”

I turned as though someone slapped me. My face was purple.

As the mother of three nonverbal autistic children, I would give my kidney, ten years of my life, willingly saw off my own hand, to hear one of my children say one word.

Mama. Or crayon.

I would cry tears of joy as my child said every wrong color ad infinitum, as I gleefully pulled crayons out of every available box.

You may be thinking:

So this is how it feels when the bottom drops out.

When what you had always taken for granted, isn’t there.

When food doesn’t show up on shelves like it’s supposed to.

When people stare, with suspicion and fear, and complain, out of inconvenience.

When the mechanics of the everyday, like a mouth that doesn’t speak, grinds to a halt.

And isolation and voluntary quarantine is a way of life.

And keeping your children safe, and alive, is on your mind.

But don’t you get it? We’ve been living this life all along.

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