
by Heather Cadenhead
When I was pregnant with my older son, I purchased a hardcover journal that I began to fill with letters to him:
I took my first look at you. I remember it in perfect detail—they set you on the warmer and you opened up your beautiful eyes and looked at me.
I wonder what your personality will be like.
I hope, one day, you will marry and have lots of babies of your own.
I’ve not known how to write this, but Milo, you were diagnosed with Autism Spectrum Disorder in January of this year.
My Milo. How I’ve avoided this journal. The pain of knowing that you may never be able to read the words I’ve been writing for you since before you were born has been too strong for me to face. It’s been almost two years since my last letter.
I decided, then, that there would be no more room for creativity. I would repurpose my itch to build new worlds on the page into unceasing efforts to help my son. I read stories of stubborn mothers finding the right therapies and interventions for their children. I would be one of those mothers. I was determined to sacrifice whatever I needed to sacrifice, including my writing, my friendships, my health—whatever was required of me, really—in order to be an active and engaged mother to my child with non-speaking autism. I quit my local writing group. I stopped submitting poems to literary magazines. It all felt like a waste of time–and I didn’t have much time. Research indicated that, if my son wasn’t talking by the age of five, he never would. When a friend recommended a specific preschool, we requested to be added to the waitlist. When another friend labeled a specific therapist a “miracle worker,” we immediately set up services. When my mother-in-law sent autism-related books in the mail, my husband and I read them. We wouldn’t be a statistic. Of this, I was certain.
I renounced the blank page and went about the business of helping my child. I read a book in which a mother set up an in-home daycare. It was in this daycare environment that her autistic son learned to speak. Newborn in tow, I started a preschool homeschool co-op that met in my home two mornings per week. My husband and I were deep-cleaning our home every Monday and Wednesday night, for months on end, dragging the same classroom supplies out of the broom closet and re-hanging the same educational decor, week after week. It was important to me that our home felt like a home on days that we weren’t functioning as a preschool co-op, but the constant building, breaking down, and re-building admittedly wore on both my husband and myself.
Meanwhile, the people I loved most seemed to be wrinkling their noses at every move I made. I recall a whispered phone call in the bonus room of our first house while my colicky son, yet to be diagnosed with autism, slept fitfully. “I used to think you were ambitious,” a friend chuckled, like my life was just a big joke now. I pulled the phone away from my ear to stare at the caller’s name in disbelief. I didn’t say anything back. Sometimes I felt that I’d absorbed so much of Milo’s silence that it was gradually becoming my silence, too.
In a recent haze of sleep deprivation, I tripped over a parking lot divider. I managed to stretch my hands out just before impact. However, I was still picking tiny pieces of sharp gravel from the grooves of my palms hours later. One week later, my legs are still bandaged from knee to ankle. I’m fine—but I’m also throwing back a cup of cheap coffee in the hope that I don’t trip over that same divider in just a moment. It is nobody’s fault. It isn’t my son’s fault. It isn’t my fault. It just is. Sleep deprivation is part of the territory when caring for some children and adults with disabilities.
Prior to my journey as the mother of a child with non-speaking autism, I worked in the fiction department for a leading trade publisher. I published poetry in literary magazines and released two chapbooks with a small press. I was accustomed to putting in effort and seeing results from said effort. I assumed, wrongly, that I could follow this same blueprint in parenting my child with autism. Instead, my efforts were like withered dandelions, blowing away in the wind. Occasionally, my labors resulted in measurable outcomes—but, more often, they didn’t.
Last year marked a decade since my son’s Autism Spectrum Disorder diagnosis. That mile marker was significant for me. In speech therapy for the last decade, Milo was still considered non-speaking. Had I been in denial for a decade—hoping things would get better, missing years of opportunities to nurture my art? It was a sobering question, but I ultimately decided the answer was no. After all, my motto was, is, and always will be: “I’m never giving up on Milo. If Milo isn’t talking at the age of thirty, I’ll pray for words at forty.” When my body at last flutters toward the ground like a spent autumn leaf, merging with earth and rain, I will have one more mile marker to anticipate: the New Heaven and the New Earth.
I’d been labeled “unambitious” by someone whose opinion mattered to me—but that person wasn’t holding my twelve-year-old son’s wind-chapped hand, clambering over snowbanks, as we ran the two miles home from the sledding hill in our neighborhood. That person didn’t know that my son refused to wear gloves, scarves, or hats, even in below-freezing temperatures. That person didn’t watch my son cry until he could no longer produce tears due to the bitter cold. I’d wanted to include both my boys in sledding that day. I’d forgotten, from the previous winter, that Milo rarely tolerated gloves, scarves, or hats—and so, we’d blissfully set out, leaving a trail of boot prints in the fresh snow behind us. Halfway to the hill, Milo began discarding items—a hat here, a mitten there. I tried to catch each item before it landed in the wet snow, no longer wearable. Soon enough, he’d thrown his hat, both mittens, and his scarf into the fresh powder. I stuffed the items in my pockets and gave him my mittens and hat. Those, too, were thrown into the snow. Finally, Milo had had enough. We’d reached the sledding hill, but Milo could not tolerate the cold for one more second. Linus’ lip quivered as he watched Milo; he was afraid we’d all need to head home immediately. He was terrified he wouldn’t get to sled this winter. My husband stayed behind to sled with Linus; Milo and I ran all the way home.
When I finally turned the key in the front door and stepped inside our warm living room, I immediately set about helping my son. I helped him change into dry, warm PJs, plugged in two space heaters and aimed them at either side of his body, and started making hot chocolate. Internally, I berated myself as I stirred a hot-chocolate packet into almond milk on the stovetop. I felt guilty for taking him out in the first place. Ambition was the furthest thing from my mind. All that mattered was protecting my child. It seemed practically indecent to think of writing a book. I had no business even contemplating it. For years, I thought about my creative efforts in this way.
Time and again, I’d start a new project with high hopes—only to watch that project inevitably gather dust in my computer files as I dealt with the more pressing matters of parenting and caregiving. Last winter, I was nearly swallowed up by my own anxiety. And, in the midst of that darkness, I wrote poetry. That poetry was like a headlamp, guiding me out of the night. In the spring, I began to realize that I had enough material for a full-length collection. It didn’t happen by accident. It happened while I boiled noodles for dinner, my laptop on the kitchen counter. It happened on the couch, in semi-darkness, while my family slept. It happened in the car, waiting for my son to finish another occupational therapy session. By no means was it easy, but, in the end, I was a better parent and caregiver for having gone through the process. And, in a surprising turn of events, it seemed to give my family permission to pursue their own creative goals as well. The morning I announced that the nightmare was finally over—that my book was finally finished—my younger son, Linus, started writing a story of his own. My husband began work on a comic series.
In his book, The Gift: How the Creative Spirit Transforms the World, Lewis Hyde describes the specific way that most artists are born: “Most artists,” Hyde writes, “are converted to art by art itself.” I hadn’t thought I looked particularly inspiring to anybody in my household, scrambling eggs and scribbling ideas for poems in my day planner (Example: “Occupational therapy @ 10:15, earthen, scarlet thread, pine root, shadow, wedlock, sea legs, riddle, START POT ROAST BEFORE LEAVING!!!”). I thought I looked like a mess, and I was objectively right, as the elastic in my daily ponytail lost its strength over the course of any given day, finally surrendering itself to the chaos of the unknown. In spite of this (or was it because of this?) Tyson and Linus found reason to believe that they could be makers, too. To quote Hyde once more: “Invention, it must be humbly admitted, does not consist in creating out of void but out of chaos.” As I add a new set of ponytail elastics to my cart: I couldn’t agree more.
Poet and essayist Heather Cadenhead publishes a monthly newsletter about her life as a writer and mother of two sons, one of whom is diagnosed with non-speaking autism.