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…   

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.

Musings from the Couch

The gas fireplace kicks on.  I lose my train of thought for a moment as I give in to the simple decadent pleasure of its radiant heat.  I’m here on this weathered but still solid couch, legs stretched out and butt aching from too many hours of sitting still.  My inner scholar voice has spent the day droning on about something that might matter to some person I imagine could at some time sit in front of a gas fireplace like this one and think about the thoughts I am thinking.  But I know I would be happier and care more hunkered down on a hunk of granite warmed by the sun doing nothing of the writing kind.  My mind drifts to a certain granite outcropping overlooking miles of ponderosa and grand fir, rolling farmland and deep canyons housing rivers named Potlatch and Clearwater.  It drifts there in the white space between hard won sentences.  I’m alone in this not so granitic vision, but the grandiosity of the world keeps me from feeling lonely.  Who am I?  I’m a nontraditional woman writing a philosophy thesis.

I’m writing a philosophy thesis while my seven and a half month old baby boy sleeps upstairs.  We live in a small house in a small town a few miles from a small mountain ridge made of granite, the ridge that is home to the perch I just visited.  The town here 2500 feet below is charming, nothing too garish, the people in it no-nonsense, kind, open to conversation.  My neighbor Jane comes to mind.  We shared a few moments at the cafe yesterday flipping through a library book on “castles of the world,” baby breath rising and falling against my chest.  Meandering topics shifted our gaze to the women’s art strewn along the walls, each piece dedicated to the artist’s favorite artist of the woman kind.  The one an homage to Deborah Butterfield was taken down, Jane tells me, but it was good.  I make a mental note to look her up.  Butterfield.  Deborah.  She makes horses from driftwood.  Beautiful.  All from found pieces.  And then she casts them in bronze.  Fragile found pieces of dead matter rearranged to look like forms of life and then cast in cold metal that could weather another ice age.  The permanency of it is comforting.  Sort of.  Like this time in my life when all the drifting that got me to yesterday’s cafe, to this granite outcropping, to this basement in front of this gas fireplace on this weathered but still solid couch, ephemeral as wood, is realized in one solid mammal’s breath.  A son.  Teeth emerging, his waking voice finding a dance with his tongue, his postnatal heartbeat still my own.  Jane and Me/Baby look forward to next time as we say goodbye a block from the cafe.  Three steps later I realize I forgot to ask how her chemo was going.  I don’t turn around.

I am lucky.  I repeat it as if in gratitude I will be insured against evil.  Tomorrow I will join this couch again to thoughts abstract and real and maybe, if I’m lucky again, find the time to wander freely with Jane on a rock before a castle with a bronze horse and lay down thanks for Virginia Woolf.  And for the other sex to which I have found one case of unfettered love.