Wanderings on COVID and Autism Parenting

My intention with “Married” was to write about my experience of the year 2020, the year COVID was unleashed, sickening and killing people everywhere and crushing our spirits. I would start with New Year’s Day and walk it forward. Inspired by a blog written by a woman in her 20s who charted her literary and culinary explorations during her COVID year spent mostly in solitude, I set out to write a contrasting blog about my year, a year in which I did not finish a single book I started and rarely had a moment alone.  It was a year when cooking meant assembling something with nutrients on a plate with olive oil, salt, and garlic granules sprinkled on (the simple task of peeling garlic too agonizing). Reading this other woman’s blog, I was envious of where her mind got to travel this year and all the new writers’ works she got to ponder and remembered what it was like to be single and free. I wondered how different our politics might look if every human took a year or more to explore art, literature, philosophy, and took the time to write and reflect.  But I also felt I was doing what I was supposed to be doing in the sense that, a decade before, I had consciously chosen family life and a job with benefits over copious time with characters and ideas and metaphors and aesthetic concerns.  I made this choice knowing that I could not raise a kid with an uncertain income. So now, my imaginative longings had to be found in short bursts of exhausted reading, in memory, in narratives I created in my mind, many while driving in the car–narratives that would never make it to paper. 

It’s hard to call this era of work and parenting an era of loss when it is so rich with challenge. Which brings me to the rest of 2020, a year of being kept awake and alive in an altogether different way from the decade of my more exploratory 20s and 30s, largely because my son, a sprite, interesting, and adorable human, has autism.  During COVID, I got the rare experience of three “work-free” months at home with him.  

Getting to know and having to guide a child who is much different from oneself is a common experience of parents.  For some who have children, different as their kid may be, the process doesn’t require a heaping effort of book study so much as the steady discipline of practicing keen observation, patience, love, and listening to the old gut.  Raising a child with autism involves these things, too, but the work goes far beyond, with the need to engage the knowledge of researchers and scholars and therapists and other people with autism, just to be competent. A person with autism is easily misunderstood as we go about practicing folk psychology in our interactions, attributing reasons for their attitudes and behaviors based on our own experience.  Someone not familiar with the differences of autism might think my son’s need for control should be challenged more so he “learns to deal” with the unexpected.  Or they may see his repetitive actions and think someone needs to reign those in. His “obsessions” or “perseverations” appear too consuming to be healthy.  His life may seem selfish or self-centered, given his proclivity to launch into detailed monologues with a person he first meets, proudly elaborating on everything he has learned about how to create complicated domino structures for knocking down.  The list of judgments and misunderstandings is long.  I am frequently tired, and in that state, I, too, am apt to cast the same aspersions against my child that I rail about when coming from others.  This duplicity is at the core of the autism parenting struggle.

Every person with autism I have met has shown a willingness to connect with some other person, but by virtue of the fact they have autism, the norms of social interaction are confounding and repetition and ritual comforting. People with autism who are lucky enough to have what is measured as an above-average IQ, are frequently able to learn about how to engage socially through explicit teaching the things others learn implicitly through everyday interaction.  That said, the effort to “pass” as neurotypical can be too much to bear and too emotionally painful and taxing to pull off.  In the end, autistic people must rely on others to accept their differences.  In the best of communities, they find themselves valued for who they are. 

Temple Grandin, the most famous and successful person with autism, points out there are too many adults with autism living in their parents’ basements playing video games all day when they could be earning a living through work. I would argue this is the result of our collective failure, and can’t be put exclusively on parents, as a parent cannot take full responsibility for whether the world can accommodate a human with disabilities. And so therein lies yet another challenge of those who parent a child with autism. We must provide guidance and teaching of things that “neurotypicals” do not need taught, using methods that are not intuitive, with no certainty that our kids will become proficient enough to one day navigate a neurotypical workplace successfully. We disperse prayers that wherever it lands, our children will find their place in the world.  We also have to live our own lives authentically, with the neurological situation we have, which means limitations on how much we can give in the way of guidance as we recover from our own long days.  We walk in the door needing nourishment from our family and often find ourselves using that time to create another lesson plan (with visuals!) on how to show compassion and why it matters. I am never more impressed by a human than the single parent raising a child with autism. On hard days, I hear their voices, giving me a pep talk on how to find a balance between my needs and the needs of my child, how to ask for help, telling me to believe.

All of which brings me back to reflections on New Year’s Eve 2020 and New Year’s Day 2021, a year following the scene at Central Park, and the COVID year smashed in between.

To be continued…   

Tucked In

He is tucked into her, the baby–almost two now and on the cusp of boyhood.  She contemplates the time they have spent together in near disbelief as she rocks him gently back and forth, her belly rising and falling in tempo with the rising and falling of his chest.  His tiny toes twitch in fits and starts as he gives himself over to drowsiness.  His arms flail.  He bats her chin and collar bone with the back of his hand.  She calls awareness to her own body, to what she is holding there, to her arms like two-by-fours, her sinewy aching neck, her belly pulling her diaphragm tight to her ribs.  She accepts all of it, invites in the heaviness of the drift to nowhere, the forgiveness of a day’s work. She offers reprieve to everything that belongs to her except for the small hardening of her left thigh where she flexes and releases in rhythm like a pendulum, forward and back, forward and back. In one final effort of consciousness, the baby pulls his love-worn blanket over his eyes, his body falling limp with hers.  She leans her head back to doze, jaw dropping as slobber pools behind her lower lip.

She is tucked into her mother now at three years old, calm as a sleeping baby but with eyes wide open.  Her mother’s breath rises and falls in heavy turns, head tilted backward, jaw drooping, the rough texture of her aging skin brought into relief as streaks of light pour through the crack in the curtains.  She can’t curb her desire to touch the face she knows so well by sight.  She refrains for what feels like eternity, staring, studying, until unable to restrain herself any longer, she places the tips of her small fingers gently where her mother’s cheek collapses into a dimple, takes in the comfort of its powdery softness.  She would run her fingers over every contour of that face, but her arm tires and lurches to her side, causing her mother to startle to wakefulness.  The girl pulls herself in tighter, taking in the scent of Tide on oxford cloth as she is scooped down to the floor.  “I fell asleep,” her mother sweetly observes as she glides toward the kitchen to start dinner.

Drool runs down her chin. She is a mother now, waking to find her baby sleeping, his toddler limbs dangling from the edges of the pillow on her lap.  His eyelashes are gold-tinged, his cheeks pink from heat.  She marvels at the impossibility of him, the impossibility of any whole complicated organism with beliefs and desires looking up at her, looking up to her, breathing life.  She allows herself to feel a pang of animal loss.  It reminds her to stay present, to relish the moment.  He is here now, and she is here now.  She can only hope he will one day reflect on the cradle of her heartbeat and know her love as she knows the love of her own mother.  She reflects on her own thoughts.  They strike her as misdirected, the focus on his future somehow wrong.  She looks down at her belly still rounded from pregnancy and places a hand there.  So much will happen, all in a string of moments like this, and there is nothing to do but breathe through it all.  She stands and lowers him into his crib, runs her fingers over his plump cheek.  His head jolts reflexively, as if a fly had landed there.  She glides to the kitchen, places the kettle on the burner, and wraps her hands around a cold empty teacup, waiting for his cries to signal it’s time for cheese toast.

Better Yet

Eight month old Alex perched in his high chair yanks at his bib, pulling the Velcro tabs apart.  I reach behind him and reattach.  He does it again, does this repeatedly, teasing me with each pull, defying my resolve to keep him protected from flying morsels and a free falling sippy cup.  Again and again I reattach.  More than once, we’ve endured ten rounds of this in one feeding.  I have said it so many times now I wonder why I don’t give up and find a safety pin:  “You can’t do that, sweetie.  We need the bib ON YOU to protect your clothes.”

“You can’t do that, Alex,” my deceased father hears me say, and now he’s that guy who leans in to correct the pronunciation of something I’ve said in the lobby of a concert hall or at the counter of some cafe.  “Na-BO-kov.  Not NAB-o-kov.”  Excuse me?  It’s weird these moments.  I politely offer thanks.  He nods in recognition of the point he just scored, looks the other way.  I look down as if in deep thought.  A decent enough guy, but I can’t deny my urge to punch him in the face.

I’m having a conversation with my son when the ghost of my father leans in. “You mean he mustn’t,” he corrects, his voice a masterfully controlled contrabassoon that soothes as it stings.  “Mustn’t.  It’s not permissible.  We see that he can.”  We’ve been through this before, dad and I, many times.  Can, can’t, may, may not, must, mustn’t.  “Everyone I know uses ‘can’t’, dad.  It’s perfectly acceptable.”  “Well,” he says, focusing on the wall behind me, “it’s not the best choice.”

I’m not the indignant teenager I once was.  I know his years of instruction have added up to a better me even if I struggle with the lessons.  No matter.  The intrusion is pop rocks in my head.  Alex drops his rattle, stares at me as if to say, “What now mommy?”  In the uncomfortable quiet I plumb the depths for an answer.  Peas.  You must eat your peas.  I make the “ah” sound and insert another spoonful into his mouth.  He swallows, bounces gleefully, locks me into his gaze.  Milliseconds later, he’s ripping off his bib and slinging it to the floor, painting the universe in puke green slime.  I surrender to a new outfit and grab the sponge.  What I would like to say to a flesh and bones version of this specter is “pull up a chair, swellhead.”  Finish your handy work.  Fix my speech.

Sometimes the memories cascade.  I say can’t.  He says mustn’t.  He says mustn’t, and instead of exploding, I lie back and take in the sites.  The soft serve swirl of his white hair, the dry creek beds of his forehead, loose jowls like chicken skin.  I’ll visit his difficult eyes, the bridge of his once-broken nose, his square matter-of-fact chin.  He’s at the head of the table, trunk large and strong, spine bent but confident.  I sit across, shoulders hunched, eyes watering by the flicker of the candle’s flame.  And listening.  He’s a force, this man.  A survivor.  He has things to say.

Alex is ready to roll.  I pick him up from his high chair and steady him as he walks toward his pile of toys.  He’s distracted by the rocking chair, leans over to sink his teeth into its dark wood.  “No, dear.  We don’t eat furniture,” I say while directing him toward his favorite bear.  I think of all the boundaries a parent sets, the pointers, the corrections, the challenge of getting the balance right.  I think of how lasting are these words:  no, can’t, don’t, mustn’t.  And though it’s true that I still sometimes bristle when that contrabassoon windstorm blasts me home, I’m saddened Alex will never know its song.

So this is how it is in death.  Hallucinatory and lifelike.  The candle burns.  Dad’s there sitting on the other side of our old kitchen table, the whole man, gazing out at his fig tree, secretly pining with me in the silent space.