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.


If I could paint you a picture of autism it would not be neat and tidy, or digitally photoshopped into a vectorized, seamless pattern.

There would be gnarled tree trunks mangled by lightning strikes and re-established root systems twisted onto themselves from too many barren winters.

There would be entire forests annihilated by raging fires, and my throat choking in perpetuity from the smoke.

There would be tiny lizards scampering up brick walls, Arizona pink sunsets and sudden hail storms that turn into scathing summer days.

There would be lemonade stands and an ice cream truck’s dissonant melody echoing from inside of a bomb shelter of my own making.

There would be toilets clogged with PJ masks figures, the ball of hair my son ripped out of his head, and the lump in my throat.


There would be sheets missing from the book of time, and time itself would be nothing but a melting Dalian construct cooked up for exactly 1:55 in the microwave to avoid scalded or frozen chunks of amorphous, breaded meat byproduct.

There would be doors being unlatched from their safety locks and my will to live wandering from its home until it drowns in two feet of water. But being pulled back to reality by a blowout needing to be wiped off the walls.

There would be graffiti others scrub in repulsion that you realize is prophecy after it’s half erased.

There would be walls and walls of picture hanger hooks, like hanging gallows, stripped of life’s masterpieces and mundane, indiscriminately.


There would be a nonverbal little girl twirling her hair in a room where it is always 2 o'clock.

There would be life and beauty waiting in the gore of the commonplace, not yet born, coated in a layer of vernix.

There would be gifts born to us en caul beneath the onslaught of blood and massacre of fluids, not yet breathing, between this life and next, waiting for us to reach in and pull them out with our bare hands.

There would be tiny acts of sustenance growing from impossible situations or even strangers.


They would be like dandelions rearing their heads through the cracks in the concrete until they became mutilated by the sheer will to survive.


© 2019 by RAISING A PHOENYX.