The Covid test for my son came back positive. Great, I told myself, first you gave him autism, now the plague.

Dan, 32, has been unable to speak since he was three and a half, a rare case of Childhood Disintegrative Disorder. Doctors at Yale told my husband and me to expect the worst. This, they said, was as severe as it gets on the autism spectrum. The worst did not happen. As an adult, Dan has an active life. Still, he is far from cured. Due to his lack of speech and other disability-related deficits, he cannot live by himself or go anywhere alone. He lived with us until he was 22 and then moved to a nearby group home. It is a beautiful, well-furnished house and he has his own large room. Still, it is a group home.

I do not know what happened to our once normal child; nobody does. As the spectrum itself grows, it becomes more confounding. For me, maternal guilt comes with the territory and it is irrational. I am still haunted by the long-debunked theory that “refrigerator mothers” cause autism. In my case this is beyond ridiculous. Friends, relatives, and colleagues—and my husband in particular—claim I have an overabundance of warmth, enthusiasm, and passion and, if anything, could tone it down a bit. Still, on bad days the dark side of my brain imagines Bruno Bettelheim, the most famous purveyor of the “refrigerator mother” autism myth, rising from his cremated ashes to crown me the world’s foremost ice queen.

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I think: I should have worked less after he was born? Should I not have moved him from one country to another when he was just a toddler? I was a journalist and a writer. But I took him with me. On interviews in Mexico City, to Guatemala to interview orphans, to Panama, Thailand, and the Philippines to catch up to his foreign correspondent father. He rode in a baby backpack and played with my hair. I took him—and a nanny he loved—to a North Carolina writing workshop, because two weeks was too long a separation. Doesn’t this exemplify a warm mother?

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I should have played more games with him. Did we have enough puzzles? Too many? I read to him every night, didn’t I? Goodnight Moon. The Very Hungry Caterpillar. The Philharmonic Gets Dressed. You name it, I read it. 

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I breast fed Dan. Or am I imagining this?

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Could a mother imagine she did such a thing, when she did not? I do not think so. But when it is almost 30 years since your child fell apart and you still don’t know why, such thoughts continue to flow. And so, it came as no surprise to me—or others—that when Dan tested positive for the novel Coronavirus, I was sure I had given this to him, too. I based this on circumstantial evidence which would be mortifying, if it weren’t so funny. In the worst of times, and in our memories of them, humans crave humor. If we didn’t, the Holocaust movie "Life is Beautiful" would not have won three Academy Awards. 

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So here goes: I was sure I gave Dan the virus because I had my eyelashes dyed. 

The woman who does this for me—as she tells great stories about waxing the legs of Lillian Hellman and Beverly Sills—tested positive after my last appointment with her on March 4. New York was still wide open then. She was so sick that she wondered if she was down for the count. I didn’t find out until she revived and after I had spent a day with my son. If I had known, I would not have seen him. This anti-mantra flowed through my brain, until I convinced myself I could push it aside by a list of other ways Dan could have been infected. Three of his group home housemates had it. Did they give it to him? Or he to them? Staff came in and out. My husband and I rode the Long Island Rail Road in early March. We walked and biked the crowded boardwalk in Long Beach on Long Island, where we live. This is the nobody knows virus. Dr. Peter Piot, the director of the London School of Hygiene and Tropical Medicine described in the New York Times on May 26 as a “legend in the battle against Ebola and Aids,” does not know where he got Covid-19.

Dan appears to be healthy now. He has been symptom-free for weeks. He has, ahead of time, lost the 20 pounds he usually sheds in summer when he surfs the ocean. He looks like himself again, tall and solid, fashionably balding with a Roman profile. There do not seem to be any Covid after-effects, as many others—including Piot—report. But. . . can a mother tell such a thing from a distance of six feet? As I finish writing this on June 1, I have not been able to touch my son or even stand in the same indoor room with him since March 17. Seventy-six days. After 49 days, my husband and I were permitted curbside visits with him. It is as if our son were a restaurant permitted to offer take-out, but not delivery. Neither one of us has ever not seen him for this long, even in those vintage traveling days.

His movements and his usual activities have been severely curtailed as part of Covid-related New York State emergency guidelines. I believe these guidelines create a false sense of safety and discriminate against the disabled who live in group homes. Modified house arrest, I call it. No visitors inside, except for the staff who care for him and a nurse who comes once a week. Dan cannot leave his group home or his yard to go any farther than a short neighborhood walk with an aide. The state says these restrictions are needed because autism and other developmental disabilities often come with behavioral outbursts and sensory overload. In short: the state does not think Dan will keep a mask on in public. It thinks he will run close to people and cause a fuss, otherwise known in the worst of autism jargon as a “behavior,” or a “meltdown.” How, I ask, is this behavior different from the general population?

As Dan’s guardians, my husband and I could take him for an outing to a park or home for a day or for an overnight, as we often have done. But we have been warned it could be a long time before he would be permitted to return to the corner house—The Francis Avenue House—which has been a home he has loved for a decade. It is also the place where he gets the help he needs—the help he would need if anything happened to us. We are healthy, but we are 65. One never knows. Unmasked people were among the throngs of those protesting the police murder of George Floyd, some making far more than a fuss. I deeply condemn police brutality against people of color. If I could get close enough to Dan to use the communication methods that work for both of us, I am sure he would tell me the same. I know his politics—and how he loves the diverse aides who help him get through life. He would go with me to a “Black Lives Matter” protest in a flash—and all of those on Long Island have generally been peaceful. If only I could take him without making his own challenging life even more insecure. Without jeopardizing his ability to return to his home.

I think back to the Skype calls I had with him when he was sick. He looked like a wilted, life-sized Raggedy Andy. When I remember him like this, I worry. He had late-onset autism, why not late-onset aftereffects? I worry about his mental well-being. Restrictions like the ones under which he now lives deepen his anxiety. He likes to be out and about. The two vans used by his house stand idle. Often, two of his three housemates—both of whom tested positive and are now recovered—take those walks with him. They speak more than Dan but still only very little. I know them and I know they all know what is going on. And that there is a missing piece. One of the “guys,” as we call them, was taken home by his mother when the pandemic hit.

In May, she wrote to me that he was asymptomatic, never sick, but was testing positive and could not return until he tests negative. He has been gone for more than three months. He misses the guys and they him. That they live generally in harmony is amazing, since they have such distinct personalities and preferences. At the bottom of their first-floor steps it says: “A house divided. Giants versus Jets.” That may be the most benign of their differences.

Yes, we could have taken him home. Whenever I hear from the mother who did take her son home from the Francis Avenue House, the guilt returns. She’s a warm mother, I hear Bettelheim’s ghost say. This mother sent me a message that in regard to her son, no one “would have done a better job taking care of him than me. No one can. I am his mother.” Gulp.

I have pandemic nightmares. The scenarios I concoct during the day, prompted by memory and brutal imaginings, are far worse. I have envisioned myself on trial for Dan’s murder—murder-by-Covid-infection. The prosecution called a character witness, a physician who proclaims: “She was always a terrible mother. Why, she actually kept chocolates in the house! Can you imagine having a son with autism and keeping chocolates in the house. Now she gave her son Covid and all because of an eyelash dye.”

There actually was a physician who scolded me for this original “crime,” after I told her that Dan had gobbled up an entire box. “What the hell is chocolate doing in your house?” she asked. I agreed with her. It was a bad idea. In retrospect, it was anything but a bad idea. Wasn’t it bad enough he had autism, did he have to forgo sweets too? And what about his younger brother? Wasn’t it punishment enough he had a sibling who could not speak to him? Was he supposed to lead a chocolate-deprived life as well? Now in my daydreams I hear the jury convict me. Son in heaven. Mother can burn in hell.

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I wonder what Bettelheim’s ghost is saying about autism mothers in the time of Covid. I wonder what the men who helped spread the word about cold mothers as Bettelheim illuminated in his book The Empty Fortress are saying. What is the ghost of Leo Kanner saying? Kanner was the psychiatrist who first identified autism in the 1940s—and as late as 1960 described mothers like me as “just happening to defrost enough to produce a child.” Their pronouncements took a long time to ebb away.

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THE VILLAGE 

 With Covid, as with everything else in Dan’s life, it takes a village. 

 In good times and bad, the villagers appear in many forms. 

If I named all for whom I feel grateful, this would be an encyclopedia. It would start with his father and his brother. It would include a panoply of relatives, friends, therapists, aides, farmers, and teachers who have worked and communed well with Dan over the years. The best of those who work with him, love him, and also love what they do. They presume his competence and work to give him more independence. Apart from family, many move on. Or we replace them.

The Yalies were replaced by the now late Isabelle Rapin, a neurologist dubbed by Oliver Sacks as his “scientific conscience.” She took one look at my husband and asked, “Do you play hockey?” “How’d you know?” he replied. She guffawed. “Teach your son to ice skate. Kids with autism need proprioceptive input. It will also give him a lifetime of fun.” She was absolutely correct. Dan learned to skate and inspired his then two-year-old brother to play hockey.

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Like so many, our family did not imagine the pandemic would hit New York as it did, or that we would need the village, in whatever form it might take, more than ever. We should have known this on March 11 when the upcoming New York City St. Patrick’s Day parade was cancelled for the first time since it began in 1762. An omen, if there ever was one. The parade, always held precisely on St. Patrick’s Day, March 17, is special to Dan.

When my parents died from natural causes during my pregnancy, Dan’s paternal grandparents took over. They, too, have now passed away. But Dan heard their stories. He knew they came from a long line of hardworking Irish immigrants. He’d heard about roots in Northern Ireland, in Derry and in County Cork in the Irish Republic. He’d heard that in America, his relatives had become NYPD patrolmen and officers, public school teachers, and more. The grandfather Dan knew, a celebrated criminal attorney, was a regular at school meetings where we requested services for Dan. “I am here as grandpa, not as an attorney,” he would say, but it had an effect. So did Dan’s paternal grandmother, a doctorate-level special educator who called upon her coterie of expert friends to advocate for him.

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It is for them that Dan marches in the parade every year. Despite the concentration deficits that come with autism, he always makes it up Fifth Avenue, wearing an Aran sweater, doing his distinctive jig or carrying a shillelagh without mishap. People who recognize he has autism shout “good job!” at him from the sidelines. Code words for “we know.” With good-natured skepticism, Dan stops at St. Patrick’s Cathedral each year to be blessed by one cardinal or archbishop or another, even though their prayers have never brought back his speech.

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Thinking of this, in mid-March we foolishly worried more about the effect the parade cancellation would have on Dan than the oncoming pandemic. So we made him lunch at the Long Beach home of his childhood. There was Irish smoked salmon, one of Dan’s favorites. Then we took our best shot at a distanced walk on the local boardwalk. Dan walked much faster than usual, as if he truly were in a quick-moving parade.

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St. Patrick’s Day was the last time I was able to get close enough to my son to touch him. The next day, the large agency which runs his group home—and whose actions and license are monitored by the New York State Office for People with Developmental Disabilities (OPWDD)—shut out everyone not essential. The aides who staff the house round-the-clock could come for their shifts, after having their temperatures taken and providing acceptable answers to questions regarding their exposure. Anyone who arrived with symptoms could not work until a physician deemed them free from illness for at least 14 days. Except for the aides, it was: “Nobody In. Nobody Out.” No therapists. No communication class from Tammy the speech therapist, no art teacher, no supervisors. No parents, siblings, guardians, or other visitors. No. No. No.

Beyond this, the staff was skeletal. In effect, as remaining villagers, they were so overworked they resembled survivors. Others were home sick, while some would soon develop symptoms and be sent home. Many were terrified about their own health and did not show up for work. I could not blame them. Officially most of these staffers are called DSPs, or Direct Support Professionals. They are paid wages hovering above the local minimum wage at reimbursement “service delivery rates” set by the state. They are paid to keep guys like Dan engaged, fed, wearing clean clothes, and assisting them, when needed, in a wide range of daily living skills including bathing, toileting, and teeth brushing.

The DSPs tell me themselves, “Nobody does this for the money.” They say they do it for love, for the other rewards, to keep them out of trouble on the weekends—or because they just prefer to be working all the time. True, some do seem as if they could not get a job anywhere else. Ultimately, they quit. Or grow into loving the work, albeit while complaining appropriately about the pay. 

At the helm at Francis Avenue is Elizabeth Balay, the house manager who lives with her husband, in an agency-subsidized separate apartment within the group home itself. She is as much a part of the Francis Avenue House as any of the guys. The house closed to the world on March 18. Liz was due to deliver her first child May 1. She would take her maternity leave in her apartment. But she was still working with the guys. “Go!” I told her. “Go to your apartment.” “I am okay,” she insisted. I was not sure this was true. But she was needed and knew it. 

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On lockdown, she had the house and the guys all the time.  Their daytime work programs shut down, as did their recreational activities, those run solely by the AHRC as well as non-agency events and programs open to people with disabilities or the general public. No dances, no bowling, no gym time at the rec, no parks, no street fairs. For Dan, no “special” hockey with the Long Island Blues, no places where he did meaningful tasks. No equestrian center, no setting up meals in a nursing home where his youthful appearance was so cheering, no farm opening to anticipate. The hydroponics class he had just started, as part of his day program, paused. For Liz and her staff, this meant no extra helpers from these programs, no extra diversions for the guys. 

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This sheltering in place also cut off my son’s most effective avenues of communication. Since he was four, I have been using a technique called facilitated communication with him, in which he requires the trained touch of someone else to prompt him to choose on his own terms the letters he needs on a keyboard. Educators at two universities—Syracuse and Chapman—have validated his communication. Locally, speech therapist Tammy and I are the only ones trained to use this technique with Dan. 

Dan and his father and brother have their own often foolproof way of communication with Dan. I see it as a meeting of the Mulvaney male minds, a critical one. But that was shut off, too. Also, on his iPad Dan has an app called Proloquo2Go which he uses to point to phrases such as “I want,” and then to photos of foods, activities and people. But none of the aides are trained to use this with him, although many try. Many also have a sixth sense that enables them to understand Dan. Some have been able to inspire him to say a few words—and even sing a few during a karaoke night. But would those aides be on duty? Or sick or scared? And even if they were working, with this accelerated staff shortage would any of them have time? 

It all sounded like a death knell, and indeed, a number of residents of group homes in the Nassau AHRC and other similar agencies would die. Most, I believe, were elderly. All mourned by bereft staff, perhaps as much as they were mourned by relatives and friends. Fortunately, the guys all survived. 

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On the morning of March 25, Liz woke me early to tell me my son was very sick. I shook myself awake. I shook my husband awake. Dan was running fevers at heights he had not known since the childhood hospitalization that ultimately led to his regression into autism. What would be the end result of this? I insisted he be tested for the Coronavirus and emailed yet another member of the village, Dr. Mary Mulqueen. She is Danny’s primary care physician and has known him for years. Before medical school, she was a counselor at Camp Loyaltown, the AHRC sleepaway camp. Mary, as I call her, or Doc Mary—when I remember to do so—told me the medical clinic on the grounds of the agency had very few kits. She did not think she could corral one for Dan. She never lies to me.

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Still, I was determined. We had to know with what we were dealing, particularly since Dan cannot speak. I had an ace in the hole, albeit one that broke my heart. I called a “village elder,” so to speak, the youthful Shaun Weathers, who is the AHRC’s Senior Director of Program Operations. He also speaks the truth and gets things done, even when I also give him a hard time about some agency lapse or another. I told him that before we saw Dan on St. Patrick’s Day, I had been in contact with someone who I since learned had tested positive. “This changes the picture,” he said. I did not mention my eyelash dye. 

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Dan was tested March 26 with positive results on March 27.

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Immediately I applied to the state for my husband and I to be tested. Two weeks later they called us to a tent at Jones Beach, where a doctor looking kindly behind his mask stuck a tube down our noses and into our throats. For about two seconds it hurt in a strange way. The next day the results came back negative. Gradually, as the country began to learn some of Covid’s mysteries, so did we. We realized that all that negative test meant is that we did not have Covid on the day we were tested. Did this mean I did not give Covid to my son? Or that I am an asymptomatic carrier? Or that we merely did not have the virus on the day we were tested? We still do not know.

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The village shrank even more. More people called in sick. Liz finally agreed to retreat to her apartment for the remainder of her pregnancy. She was “replaced” with a group manager who would do double duty—her own house a few minutes away had nine “guys.” As Dan’s sickness and fever prevailed, at least two staffers were doing too-long shifts at Francis Avenue. They were exhausted and told me so.

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And slowly Dan got better. His fevers popped up and down, but never as high as before. He had a cough for a while, then it too subsided. The day program, led from home by AHRC veteran Dorothy DeMarco, sprang into action. Two staffers went to work with the guys at the house, also risking their health. They baked. They got him back on Facebook and posted photos. He started practicing surf pop-ups in the basement, where he also learned some boxing. Angel, an aide who he has worked with before, was there—and the familiarity calmed me further. In the yard, they played basketball. Soon they were permitted to take walks. The walks were too short. I complained. The walks got longer. 

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Soon my husband and I were able to make those curbside visits. The first was May 5. Cinco de Mayo. More magic. The three of us had celebrated it together in Mexico City, eight months after I’d given birth to Dan. Now, Dan came out of the front door, dutifully wearing a disposable mask and with the stunned look of a political prisoner wondering about his fate. In the best of scenarios, a bridge would appear on his street followed by a noir trade-off of detainees. Would Dan be permitted to go for a longer walk in exchange for five Russian spies? We had more visits, including one on Mother’s Day.

Now we go every Sunday at six, bringing him bags of treats. He stays on the steps, sometimes with prompts from an aide, and my husband and I stay on the sidewalk. That he can do this now is amazing, as a little boy with autism he often ran away. We’ve found him at the grocery store, on a boat parked in a neighbor’s driveway, where he had found a bag of Cheez Doodles—and at the police station after they called and said, “he won’t talk to us.” That really happened.

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I have written to OPWDD saying that if people can go to the beach, so can Dan. They still say that if I do there this is no telling when I can bring him back. A week and a half ago they told me they were working on it. As they work, I wait.

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 And so, we wait.

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Cardinal, a DSP who had the virus, is well enough to be back working a bit. I long to see him again, back in his usual mode, a frenzy of activity and caring. Liz had her baby and although she is still on leave, she wheels the baby boy on the neighborhood streets and stops at the window of the living room in the guys’ part of the house. Recently she stopped to sweetly remind Dan to be quiet in the night so the baby can sleep. The locked door to her apartment is down the hall from his room. Sometimes he makes noises of frustration at night and hits his head with his hands. It stopped for a while after Liz asked him to be quiet—and has only returned once or twice since.

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Day Program Dorothy, it turns out, has experience with Proloquo2Go. The other day, one of her staffers at Francis Avenue told me on a Skype call that while using the app, Dan touched the words “I want” with total independence. When asked to finish the sentence, he went to the square that read “vacation.”

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He wants a vacation.

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I’ll bet he does.

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(originally published in Statement of Record, an online literary journal)

Barbara Fischkin is the author of three books of narrative nonfiction and satiric fiction and is currently writing an autism-related historical novel titled The Digger Resistance, some of it set in what was once an Eastern European shtetl. She holds an interdisciplinary Master of Liberal Studies Degree in “Autism Past and Present,” is a writer for City University of New York’s Office of Communications and Marketing, and is a member of the CUNY Disability Scholars Group. As an international journalist, Fischkin covered stories in Latin America, Asia, and Europe and wrote for major publications including Newsday, where she was on staff, The New Yorker, and the New York Times, among many others. 

(Photo by Robert Arkow)