I left a dream job to be closer to my autistic twin

a month ago

I left a dream job to be closer to my autistic twin

The Guardian

Ten days before our birthday, I drove my 2005 blue Nissan Sentra over the Verrazano Bridge and let the tears roll out. He didn’t know it, but I was almost home. The Verrazano spills into Brooklyn, where Scott and I entered the world.

We were born a little after 11am on 28 July 1994 in Maimonides hospital, fraternal twins. “Two boychiks!” my father boasted, still in his blue scrubs, as he burst into the waiting room. The cheering section – two grandmas, two grandpas – erupted.

By the summer of 1996, when we moved from Brooklyn to Long Island, my parents could sense something was up with Scott. I was developing at a much faster rate – I was walking, talking, answering to my name. He wasn’t. Then one afternoon my mother saw Scott flap his arms, a trait of children with autism. Her heart sank.

In the late 1990s, when Scott was diagnosed, the disorder was not part of the national consciousness like it is now. Autism Speaks, the most recognizable autism advocacy organization (but also the most controversial; it’s been derided for its questionable funding allocation and for framing autism as an “epidemic” that needs to be eradicated rather than a neurological disorder) did not form until February 2005. So we did our best to help Scott navigate a world that was not built for him, while making sure to not disturb the peace of those who were certain it was built for them.

Scott is nonverbal, but he is hardly mute. He. Is. Loud. Every morning he bounds out of bed, a huge smile on his face, and yells and yells and yells. He kind of sounds like a foghorn, or a goat – one new neighbor assumed we kept one as a pet. The sound is so distinct, so singularly Scott, that only my parents and I can detect from another room when the happy sound turns into an angry sound, laced with irritation – the frustration of someone who knows no better way to express himself.

That was the noise that filled the mall food court one afternoon in the early 2000s. The four of us sat around a small table, munching on Chinese food, when something began to irritate Scott. He might’ve been sick, tired, bored – we couldn’t figure it out. But he started to wail, attracting glares and a visit from one man with a loud mouth of his own.

“Doesn’t that boy understand Jesus?” he said over and over. I wanted to jump out of my seat and punch him in the face. Instead, since I was seven, I sat there and prodded my father to do something.

He demurred: “Finish your food, Joshua. Quick!” And so I shoveled the wontons into my mouth, and off we went, with a screaming child in tow and a phony holy man screaming at our backs. I could have fainted from embarrassment.

There were dozens more days like that growing up, but for whatever reason, that is the afternoon that lodged in my consciousness, that taught me to feel the shame that manifested in crippling shyness as a child. It’s also one of the stories that brought me home.

When I tell people I left my job writing for a newspaper in South Carolina to come home to New York without another full-time opportunity lined up, I’m generally met with some mixture of confusion and bemusement. White-collar Americans are so conditioned to identify with their careers, with raises and 401ks and benefits packages, that when someone hops off the capitalist wheel – if only for a few moments – it is considered mourn-worthy.

What my peers don’t understand is that this shift is rooted in something deeper. Scott and I turned 27 this July, and for most of those years I’ve been running away from that afternoon in the food court. Now I’m running towards it.

•••

The pandemic has forced many of us to rethink our lives, not least how we work. For some, that means a complete recalibration. About 4 million Americans quit their jobs in April, according to the Bureau of Labor Statistics, the highest rate since the agency began publishing such data in December 2000. Upheaval can be a close friend of creativity, and many Americans, faced with a once-in-century pandemic, are choosing to bet on themselves.

There’s no doubt privilege helps. It certainly does for me. I come from a white, upper-middle class family in Nassau county, the 11th-richest county in America My parents are retired, with pension and social security payments hitting their bank accounts monthly. They are not rich, but they are comfortable. Comfortable enough to take in their 27-year-old son, no questions asked.

Scott, left, and Joshua Needelman, right, at their b’nai mitzvah.
Scott, left, and Joshua Needelman, right, at their b’nai mitzvah. Photograph: Joshua Needelman

It’s probably that same stability and sense of responsibility that, until a couple months ago, prevented them from asking me for help. Scott is ostensibly an adult, but developmentally, he’s stuck somewhere in the infant stage. He is, and probably always will be, dependent on others to perform the most basic of human functions: preparing food; bathing; using the restroom. Scott is occupied most of the day – he attends a program for adults with special needs from 9 am to 3 pm, and then spends a few more afternoon hours with aides – but he is with my parents nights, mornings and weekends.

Those hours vacillate between glee and chaos. One minute, he might be lying on the couch, giggling as he watches old Barney clips on his iPad, kissing my mom on her forehead. The next he could be running to the bathroom, feces dripping down his leg, hollering and crying. He won’t go to bed unless firmly foregrounded in his Barney echo-chamber; the big purple dinosaur needs to be playing on both of Scott’s iPads, his iPod, his Samsung Galaxy and his TV. My parents, in the adjacent room, can hear it all. For safety purposes, Scott’s bedroom does not have a door.

Barney is a din-o-saur from our i-mag-in-ation

And when he’s tall

He’s what we call a din-o-saur sensation!”

If you listen to that chorus enough times, in enough different languages (Scott has fallen down some weird YouTube rabbit holes), it starts to sound less like an innocent children’s tune and more like a horror film jingle.

It can go into the wee hours of the morning. Some nights, no one sleeps.

I would not have faulted my father, 70, or my mother, 65, for asking me to stay close to home after high school. Instead they rooted me on as I attended the University of Maryland, and then crisscrossed the east coast in pursuit of journalism. Since graduating in 2016, I’ve lived in Washington DC, Philadelphia, Charlottesville, Virginia, and most recently, Greenville, South Carolina.

My strategy was ruthlessly capitalistic. I’d land a new job, parachute into the city, work myself to the bone, and, when the time was right, pick up and move to the bigger publication and the better beat. I was climbing the ladder nicely, earning good money and basking in the specific sheen of respectability that comes with being a successful writer.

Then, in March 2020, a couple of weeks before a scheduled trip home, I got a call from my mother. She, my father and my brother were sick. Scott couldn’t articulate his symptoms, but he was sluggish and sneezing. My parents felt like they had the flu, even though they had been vaccinated. There was one other weird thing.

They had lost their senses of taste and smell.

•••

Spoiler alert: my parents were fine. So was my brother. Months later they tested positive for Covid-19 antibodies, meaning they had contracted the virus, but they all had minor cases.

They were more fortunate than the 652,480 Americans (and counting), who had died from Covid-19 as of 13 September. Seventeen months into the crisis, it has become a pandemic of the unvaccinated, thanks to vaccine disinformation elevated by strikingly craven, megalomaniacal politicians and rightwing “thought leaders”.

I got vaccinated in April, and as I tiptoe out of the darkness, there’s no doubt my priorities have shifted.

I began to see things differently in June 2020, when I went hometo New York for about three months, working remotely.

In the evenings I’d cook Scott dinner – broiled tomatoes and spaghetti and tomato sauce – shuffle him upstairs to bed and help him pick out his VHS for the night. Sometimes, if he was feeling a little antsy, I’d cuddle up in bed with him. Other times, if I was feeling a little antsy, he’d cuddle up with me.

Scott and I spent nine months together in utero, placentas bumping into each other, but I was the fraternal twin who had been given the gift of language. Growing up, guilt lurked around every corner.

My needs, I learned, would always have to come second. I called myself “uncle brother”. I mimicked Scott’s speech therapists, drawing up lesson plans, desperate to pull the words out of his mouth and make him whole. And make me whole.

The words never came for him, of course, but language became one of the focal points of my life as a writer. I’ve always been drawn to stories about people on the margins, but it wasn’t until the pandemic, when we are all forced to confront ourselves like never before, that I realized my professional path was the manifestation of what’s always been inside: a desire to give voice to those who don’t have their own.

It was with a renewed perspective that I hopped on a plane last fall to go back down South, but in many ways I never left New York. The time at home had proven so clarifying, so fulfilling, that every day away from Scott felt a little empty.

He is a gentle boy with a soft face and olive skin. At 5ft 3in, 90lb, he’s so delicate I fear the slightest tumble might break him. He walks through life with the innocence available to those unburdened by social norms, and he’s taught me that words don’t make us human; what’s buried deep beneath our bones does. Scott makes me a better brother, son, friend, partner, person.

I had to go back to work, though. I was a newspaper reporter on the Clemson football beat, a dream job, and parts of the work brought me great fulfillment. I got to write about the humans at the center of some of the nation’s most sacred athletic dramas, and to shine a light on the administrators and coaches who benefit from an exploitative, brutal “game”. But I often felt out of place.

Scott, left, Joshua Needelman, right, at Joshua’s graduation from the University of Maryland.
Scott, left, Joshua Needelman, right, at Joshua’s graduation from the University of Maryland. Photograph: Joshua Needelman

In October, I fell into a dark place. The pandemic was peaking again, the presidential election was coming and my best friend of five years had just left my life. On top of it all, Scott was 750 miles away. I worried myself into a painful bladder problem, for which several thousands of dollars of doctors visits and procedures yielded no diagnosis. I knew I needed to go home to Scott.

Months later I’d made the decision to leave my job but hadn’t worked out how yet.

Then I got a call from my mother. Scott had undergone surgery to remove a cataract in his right eye, which had been discovered a year earlier and apparently stunted his vision. In order for the surgery to work, Scott would need to refrain from touching his eye for two weeks. That was easier in theory than in practice. His eye was red, wet and itchy. He wanted to rub it. He immediately ripped off the prescribed eye patch. Verbal commands proved ineffective, so my parents agreed one of them would need to stay by his side at all times, to make sure his eye remained unmolested.

Hours into the experiment, my mother called me. Scott was screaming for the whole neighborhood to hear. My parents were in crisis. They were overrun with exhaustion – not just from the surgery, but the past 27 years of sleepless nights, of putting out fires, of Barney songs and poopy underwear and the heartbreak that comes with knowing your son won’t get to live the life you’d envisioned for him, and that maybe it was all your fault, and God, please, all we’re asking is that he’ll be able to see.

“Joshua,” my mom pleaded, with pain in her voice, for the first time. “We need you to come home.”

•••

To that point, I had been unsure about leaving my job: what about my salary? My 401k? My benefits?

That call changed everything. In a rush, I hopped in an Uber and booked the next flight out of Greenville. A month later I came home for good.

Scott’s eye healed. You might say it’s a blessing, but really it’s a testament to the love of three people who just want Scott to live his best life.

After the 12-hour drive, I parked my car, gobbled up a slice of pizza and lumbered upstairs. I crawled into Scott’s bed and put my arm around his side. He grabbed it. Eventually Barney stopped singing, and all I could hear was the sound of his breath, rising and falling with his chest. My job search could wait for the morning. I was home, Scott knew. I was home.

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