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.