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…