By Barbara Fischkin
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 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.
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?
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.
I breast fed Dan. Or am I imagining this?
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.
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 are now 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.
Depending on the hour, Dan tolerates a mask or doesn’t. Friends, along with people I only know from Facebook, have, with an abundance of kindness, sent him different ones to try. His success with some of these is due to the fact that his aides—all dedicated and most reprehensibly underpaid—constantly remind him to keep them on and at times it becomes habit. He seems to like a simple bandana best, which is what his father wears.
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 regards 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. I had an eight-year-old son with severe non-speaking autism who jumped all day on a trampoline, burned food like a human furnace, and was known to tantrum for sweets. It was not as if chocolate was my son’s sole sustenance. He ate vegetables galore. 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.
There also was a physician who told me I was poisoning Dan, as a teenager with the Pergo floor in his room, which I had installed because I could afford it and it was easy to clean. “Easy to clean” is what autism mothers pray for. The same physician ultimately refused to see Dan eight years after his move to the Francis Avenue House because the paperwork was too overwhelming. Translation in my brain: if you had not “put your son away,” like parents of my other patients, he would still have a good doctor like me.
Oddly, these were both good doctors who, if they did not cure Dan, did help me to understand what was wrong with him and how to move on from a useless diagnosis to therapies and interventions that helped him. I even gave doctor–parent lectures with one of them. If they only knew when to keep their mouths shut.
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. Chantal Sicile-Kira, now an author of many books on autism and a nationally recognized expert on the subject, has a son about the same age as Dan. She remembers the time, many years ago, when she took her own little boy to a psychoanalyst in France, where she then lived. The psychoanalyst told her that her son’s autism was her fault: she had stopped breastfeeding him too soon. Like me, Sicile-Kira was then new to the world of autism. Still, she could not imagine this was a proper diagnosis. She did notice that there were books by Bettelheim in the office.
I write this essay in pieces because although we can identify the novel Coronavirus, the information regarding what we know about it and how it travels keeps changing. In the beginning, we in America were told that masks wouldn’t do much good, outside of medical facilities. Now, you can’t get into a grocery store without one, but with protestors storming the streets masks may be the least of our worries. There is talk that the protests will lead to massive reinfections. I may be writing and rewriting this forever.
I write this from a mother’s point of view. But Dan’s battle with the virus terrified his father as much as it did me. My husband harbors a sentimentality that quickly morphs from humor to despair. One day, a few weeks after Dan recovered, he and I hiked at a park that is special to father and son. “I hope some tree doesn’t throw a dirty old pair of underpants back at me,” my husband said. Like so many with autism, Dan has had gut issues. My husband then looked into the woods and wiped away a tear. Since then he has applied to be a New York State Covid Tracking supervisor. He now works as a professional investigator. Driven by Dan, he is determined to find out what the medical experts don’t know. Just before Passover and Easter, my husband brought a care package with chocolate matzoh and chocolate bunnies to Dan’s group home and left it on the front step for him. He peered into a window, hoping to get a glimpse of Dan. He didn’t, and it broke his heart.
Dan’s full name is Daniel David Mulvaney. He is also known as Danny—and in adulthood, with affection, as: “Dan the Man.” He was the baby to whom I, his Jewish mother, sang “Danny Boy” off-key to celebrate his father’s Celtic roots. His Hebrew name is Dovid ben Yacov. His Irish name is Donal Mulvenna MacSeamus.
The story of Dan, as we know him now, began in 1990 in Hong Kong, back when my husband and I were foreign correspondents. I gave birth to Dan in Mexico City and we moved to Asia when he was 18 months old. By the time he was three, he spoke English communicatively, as well as words and phrases in Spanish, Cantonese, and Tagalog. Fortunately, we have the clunky old hardware from a video camera to prove this. If someone had told me this story before it happened to Dan, I would have thought they were nuts. My little boy had straight blonde hair, cut Buster Brown style, large brown eyes, and long eyelashes that did not need to be dyed. And little legs with small muscles that startled me with their definition. He started to fall apart that autumn. He chewed his T-shirts to rags, developed ear infections, did not like to be around other children, apart from the baby brother he alternately adored and challenged, like any kid with a new sibling. Eventually, Dan needed hospitalization for a raging fever and dehydration. Even then he could speak. My husband had our son Jack in his arms and Dan said, “Put my baby brother on my bed.” After recovering, he slowly began to lose his language. A run-of-the-mill British pediatrician in Hong Kong diagnosed “superior intelligence. . . he knows the world is a mess.”
“Huh?” I said.
Others implied it was our fault. Guilt bleeds into this section on history, the way the autism—now generally identified as a neuro-biological communication disorder with no known cause or cure—hemorrhages the psyches of all who come in contact with it. It is so goddamn frustrating. Along with being a jerk about autism, Bruno Bettelheim was also accused of being abusive to his patients. I take note that he killed himself the same year Dan began to fall apart.
Our fault. People did not quite say this out loud. But the message was clear. We’d dared to supplant Dan’s place in the family with another child, as if this were not something parents had been doing since parenthood was invented. If we didn’t bite on that one, people said it was because we were moving yet again, back home, ripping Dan from the Hong Kong he knew and loved. That he would now be near his grandparents did not seem to matter. Or that this was a summoning home from my husband’s employer, Newsday, as it tightened up its foreign budget in the wake of advertising losses.
Back home on Long Island, Dan was tested, re-tested, and ultimately diagnosed. The team at the Yale Child Clinic predicted he would never recover, wear a diaper his entire life, and be institutionalized by the age of ten. Dan lived with us until he was 22, on Long Island, in California, and then back again on Long Island, in a house that’s become the family base and where we still reside. Over the years, he’s learned to swim, surf the ocean, farm, ice skate, play modified ice hockey, ride horses and groom them, and create abstract art. He also learned how to use a wheelbarrow, a lawnmower, a rototiller, a sewing machine thanks to a former art teacher, a simple loom thanks to his current one, an iPad—and the toilet. He has learned all this even though he still cannot speak more than a few words and then only if he tries very hard. That he needs an aide with him all the time does not tell the whole story. It is too passive. What he needs—and gets at his group home—is constant support and prompting. After he graduated with a “disability” degree from our local public high school, we jumped at the rare chance he had to move to the Francis Avenue House, in a leafy neighborhood in the inland hamlet of Baldwin. Dan jumped at the chance, too. I had always taught him “independence is the key.” And although he would have that round-the-clock staff, he liked the idea of not being stuck with his parents for the rest of his life. To be honest, we were also tired. Dan has come a long way, but he was—and on occasion continues to be—a handful.
Since those early days, Autism Spectrum Disorder has become a pandemic of its own, one that lasts, grows, and does not go away. And so our family has now been affected by two pandemics. The autism one is a lingering wound, compared to what we hope are the bullet shots of Covid. According to the non-profit Autism Speaks, which has been useful for us with its numbers, if not much else, “The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion by 2025 in the absence of more effective interventions and support across the life span.” As Covid raged, April 2020 was again Autism Awareness Month. The Centers for Disease Control and Prevention announced that one in 54 children now had autism. It remains the country’s fastest growing developmental disability and internationally numbers are often similar. Experts, including the CDC, say this cannot entirely be attributed to better diagnosis. Our son Dan, born in 1987, was among the first generation of this pandemic. In the decades before he was born, autism was said to affect between two and four children out of every 10,000.
Doctors have suggested that Dan’s autism was caused by a virus. Which one? None of them know. Pictures of the foul, red-crowned novel Coronavirus nauseate me. But at least I know what it looks like. If I had a picture of the virus that took away the child I knew, I could turn it into a dartboard.
I have considered a Coronavirus dartboard. On one of those Skype calls, when Dan was very sick, I assured him he was not “a political prisoner,” but rather quarantined in his bedroom to keep other people from catching it. His receptive language has always been good, as if he’d lost his voice but not his ability to understand. He seems to get our family’s dark and sarcastic humor—and has since, despite his regression. Once, when he was eight, my husband told him he had plumber’s butt and he immediately pulled up his pants. On the “you-are-not-a-political-prisoner” day I studied Dan’s face and saw his signature sardonic smile. I took this to mean he got the joke but didn’t necessarily like it. Perhaps he was again considering the possibility that his mother can be a jerk. Good, I thought. How sick can he be?
“Danny,” I said. “I know this is hard but you need to be isolated because the health of so many is at stake.” His smile turned to a serious nod. He watches CNN and demonstrated that he understands—and cares. “You are being a good citizen,” I said.
The truth: with these restrictions on him now, I am thinking is a political prisoner. It hit me hard when Trump said he will order states to permit houses of worship to open. Thousands of people may be able to gather together, and my son can’t take a ride in a group home van.
To complicate the already complicated tales of these two pandemics, there is an elephant in the Covid room: the controversy over whether vaccines cause autism. Some anti-vaxxers—as they now so inelegantly call themselves—say they will refuse Covid vaccines, if they can. I am not an anti-vaxxer, although based on misinterpretations of columns I wrote years ago, there are those who insist I am. Better said, I am skeptical of the pharmaceutical industry—and I have lots of company. This is one area where I feel no guilt. My family will not infect the herd.
My sons had all their childhood vaccines and there is no evidence that a vaccine caused Dan’s highly unusual autism. Trust me, I have looked. I would love nothing more than to know why this happened to my son, to have a legitimate target on my autism dartboard. I don’t have the evidence I have heard—and believed—from scores other parents who tell startlingly similar versions of the same story. A vaccine—and then fever, autistic regression and other injuries within days, if not hours. Dan’s regression, although fast, happened over months and his illness bore no connection to the dates he was vaccinated. Would our family take a Covid vaccine? Definitely. If a vaccine doesn’t sicken or kill you, Covid will.
In 2008 I marched on Washington, seven years after toxic mercury was taken out of childhood vaccines, because there was still a problem. Over decades, the number of vaccinations given to infants and children had increased so geometrically that the cri de coeur—which I embraced and still do—was “too many too soon.” Could this account for the concurrent geometric rise in autism? The connection has been debunked by the medical establishment. Unfortunately, in recent years this “too many too soon” movement, fueled as it once was on common sense, moderation, and evidence, has been hijacked by religious and other right-wing fanatics, including some orthodox and ultra-orthodox Hasidic Jews who have found common cause with anti-Semites and racists. As a Jewish woman who worships in a Reform synagogue, even this much proximity to hypocrisy is heartbreaking. Oddly, Hasidic Jews have been among those holding large celebrations, as if taunting the Covid Dybbuk to come get them. In this respect, they are also aligning themselves with irresponsible, skimpily clad winter break college students. Covid has made for strange bedfellows, even outside of hospitals and morgues. Recently, perhaps to remind me that not all Orthodox Jews buy into this, an Orthodox woman with whom I am close sent me a photo of how she was entertaining her young brood with schools closed. They were wearing white medical coats. “How are you managing?” she asked. “Hope this picture makes you smile. We are dressed up as scientists working on the Coronavirus vaccine!”
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.
Dan’s speech therapist, Tammy Neumann, has worked with him since high school. She is one of the most-enduring villagers, as is Dan’s surfing teacher in Long Beach, Cliff Skudin. Among the newest is the food writer Sara Heegaard, who lives with Dan’s brother Jack. “What kind of cake does Dan like?” she asked, as his birthday approached last September. Apart from being a consummate baker, Sara understands that speech is not the only way to express opinions and preferences. For Dan, this is crucial.
If I named all for whom I feel grateful, this would be an encyclopedia. It would start with his father and his brother, now a New York City Special Education public school teacher. 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. He was so young he would ask me to remind him of his age, as I laced up his skates. Jack went on to become the captain of the Long Beach High School hockey team. Jack and his fellow “Marines” made Dan part of their brotherhood and will always be beloved members of the village. They paid regular visits to Dan’s “contained” classroom at the high school to remind teachers and aides that this guy who did not speak had lots of backup. At college, Jack’s fellow hockey players showed the same devotion. If Jack scored, Dan often got the goal-winning puck to take home with him.
Now, as our family navigates autism in the time of Covid, I think back to January 1, 2018 when Laura Curran was sworn in as our first female Nassau County Executive. Yes, I felt proud for women that day, confident that Curran, a former newspaper reporter and kindred spirit, would do a great job. Mostly, though, I exhaled with the familiar relief that helps me sleep at night. Someone from the village was now important, as well. Curran lives a few blocks away from Dan’s group home. She always greets him and his housemates when she sees them in the neighborhood. She, too, calls them “the guys.” This year she has deftly handled the pandemic in our county with leadership, clear, honest information, warmth, and grit. I did not contact Laura when Dan first tested positive. She seemed pretty busy. Still, she kept an eye out for the residents of The Francis Avenue House. “Saw the guys on a walk yesterday,” she wrote us as the pandemic lessened. She also assured us that she had an advisory committee which, among so many other tasks, would look at how and when to help reopen the Oyster Bay farm where Dan and others with autism plant, raise, and harvest crops.
When Donald Trump suggested injecting bleach to combat the virus, my first panicked autism mother thoughts were that Laura would never let anything happen to Dan. The president had just endorsed mass suicide. If he could do that—if he could be that nuts—he could bomb houses the virus had visited. I imagined Laura in a superhero getup saving “the guys” just in time. Wonder Woman to the rescue.
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.
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.
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.
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. Financially, they are to group homes and the larger mother agencies what adjunct professors are to universities: they keep the place running and they are paid the least for the most work, with the hope that benefits and overtime will make up for it. But for group homes, overtime often also means overnight. Would you risk your health and possibly your life to work for such wages? Many did not. But that so many did astounds me. 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.
There was a serious ARHC staff shortage before the Covid specter appeared. The person who suffers the most complaints about this from me is Roshni John, who supervises several group homes, as she tries to hire more people. Try harder, I tell her, as if the money she offers is her own. It is to her credit that she still speaks to me.
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.
As a house manager with an apartment on site, people do say Liz has a good deal. But it comes with 24-7 responsibility, even on days off. If there’s an emergency, it’s hers. Liz is efficient, organized, smart. Depending on what is needed in a particular situation, she is alternately no-nonsense or warm and funny. She displays the veneer of a proper education. As a teenager growing up in Brooklyn’s Haitian community, she was sent back to an elite school in the homeland which was expected to be a better influence on her than anything the New York City Department of Education had to offer. It is hard to argue with the results. She has a college degree and is studying for a master’s in health administration.
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.
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. With this support, he can express ideas. Tammy likes to pose stimulating questions. Months earlier she asked him: “Are women smarter than men?” With minimal sensory support from her—compared to earlier years—he typed, with characteristic mistakes: “Men pretend to knolw more.” Sadder, as I look over his more recent pre-lockdown communiques is one which says: “I maamaake day progfram fun. . . program old people.” This was right after he began to work at the nursing home, which was now as closed to the world as so many nursing homes were, as the Francis Avenue House was as well.
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. I worried about an aide named Cardinal who has an autistic son himself, and—as a very tall, thin black man—has enthusiastically marched with us in a few St. Patrick’s Day parades to be there if Dan needs help.
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. 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.
Dan was tested March 26 with positive results on March 27. Cardinal took care of him. Then he was sent home with symptoms.
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. There was much talk at the beginning of this nightmare about someone like Dan having immunity. Now that is far from clear. Which test? Which vaccine? Whose plasma? Whose reinfection? These questions revolve through my mind as if the answers will provide the key to the survival of the planet. Maybe they will. Or won’t. Children don’t get Covid, and then, suddenly, a hundred in New York have something like it that makes them very ill. We wind up to answers and then wind down to knowing nothing. To me it sounds alarmingly like autism, where more than three decades after the numbers of affected children began to increase geometrically, all those questions linger.
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.
Then, a miracle occurred.
Victor Cabral arrived to help the staff at the house. We had not seen him in a long time. He had been working elsewhere at the AHRC. But in our lives, he is mythic. Like Doc Mary, he worked at the AHRC sleepaway camp Dan attended and also helped us at home before Dan moved to Francis Avenue. He is half Dan’s size, but over the years he has moved effortlessly in response to any challenge Dan offered. And he still lets us tease him about the time we visited Dan at camp and Victor threw Jack, still a kid, in the pool. Jack had his new—and first—cellphone in the pocket of his jeans. Around the time Victor arrived at Francis Avenue, the agency seemed to be in a beyond-reality staff crisis. He came in and did the work of many people. I am not sure of the timing—because I could not be there—but Dan’s two other housemates may have already been sick by then. Sick or active, it was work.
Crisis again. Victor had to leave to get to another group home that was in peril of being without any staff. He got there in time—and then came back to do more Francis Avenue shifts.
I can help thinking there was some inexplicable “magic” connected with Victor’s presence. But after he arrived for what we knew would be a temporary stint and then left, staffing seemed to fall into place.
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.
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.
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.
Jennifer O’Sullivan, OPWDD Communications Director, wrote this to me on May 23:
Thank you for reaching out to us with your concerns.
OPWDD understands how challenging the temporary suspension of day services, home visits, community outings, and other outdoor activities has been for the people we support and their families, as well as for our staff and provider agencies, during the COVID-19 global pandemic response.
As the regions are now starting to re-open, we are reviewing options including a phased-in approach to the resumption of programs and visitations. OPWDD has been working closely with the NYS Department of Health to establish a process to safely begin returning to regular activities.
Be assured that as we move forward, the needs and safety of the people and families we support will continue to be our top priority.
If you are not already on our mailing list, you may want to sign-up online to receive the latest updates from OPWDD via email so that you will be alerted when new guidance is announced.
Thank you and please stay safe.
And so, we wait.
Cardinal 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.
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.”
He wants a vacation.
I’ll bet he does.