His Reality Is a Mock Village Where Everybody Knows Him

By 

THE NEW YORK TIMES

March 9, 2020

At LifeTown, Kenneth Kaufman, who has autism, can pay for items in a controlled setting, like at a miniature ShopRite.Credit...

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LIVINGSTON, N.J. — The commotion began just as the teenage boy was to pay for his apple juice. He flapped his hands wildly, tugged at the noise-canceling headphones atop his brown curls and then turned to his mother to deliver a head butt.

The supermarket cashier stood quietly, her smile unwavering as she patiently waited for the boy’s mood to stabilize.

Kenneth Kaufman, 15, has autism, and is something of a regular here in this small grocery store inside LifeTown, a 53,000-square-foot complex dedicated to helping people with autism and other physical and intellectual disabilities to deal with everyday activities.

Roughly a quarter of the space is occupied by a mock village of 15 storefronts, including a “bank” where arriving visitors withdraw $12 to use to buy snacks at a mini ShopRite grocery, or get their nails done at a beauty parlor called Linda’s Salon.

The ShopRite clerk, like other workers in the village, was a trained volunteer who knew that Kenneth, like many with autism, could be exuberant one moment, violent the next, and often sensitive to sounds.

Soon enough, Kenneth calmed down. The clerk took his outstretched dollar and helped him poke a straw into the juice box.

“In any other place, you scream, you jump, you head-butt on occasion, and you will never be accepted there again,” said his mother, Ella Kaufman, a management consultant from Montclair.

She has been bringing her son, who goes by the nickname Kesha, and his sibling, both of whom have autism, to the center since it opened in September. There they try things like shopping, making appointments at a simulated dentist’s office or navigating stoplights and crosswalks on 146 feet of a simulated city street.

“The ability to learn new things is great,” said Ms. Kaufman, as Kesha bounded out of ShopRite toward the movie theater’s old-fashioned marquee. “But the ability to not be an outsider is the biggest thing.

“Here,” she said, “you are accepted.”

LifeTown also includes a practice kitchen for teaching food prep, a plushly padded playground and a gymnasium.

Each facility offers features catering to the needs of people with autism, who can be hypersensitive to various stimulations. The hardwood gym, for example, has a sound dampening ceiling for children who might otherwise be unable to play basketball because the noise might be a sensory overload.

The $19 million complex is the creation of Rabbi Zalman Grossbaum and his wife, Toba Grossbaum, Jewish education specialists who give demonstrations at local schools to teach things like how to make matzo for Passover, or how to braid a traditional challah.

In 1997, Ms. Grossbaum took a part-time job as a special education instructor, and was struck by the challenges that her struggling students faced and the burden on their families.

“We really felt that these families were lost, they had so many needs, both social, educational and therapeutic, but also they felt very left out of the community, ” Rabbi Grossbaum said. “Because of the exposure that Toba had, we said, ‘We have do something about this.’”

There also seemed to be a disproportionate need in New Jersey: The state has the country’s highest rate of autism, according to the United States Centers for Disease Control and Prevention. One out of every 34 8-year-olds was on the autism spectrum — far exceeding the national average of 1 in 59.

While factors like maternal health, pregnancy at older ages and environmental factors may play a role in the high autism rate, New Jersey’s rates might be artificially high: hypotheses to explain it include more rigorous testing here, better health and education record-keeping and more awareness of the condition, said Suzanne Buchanan, the executive director of Autism New Jersey, a statewide advocacy organization.

The Grossbaums modeled LifeTown after a similar 20,000 square-foot center in Detroit built 15 years ago by an organization for people with intellectual disabilities called Friendship Circle, which was started by fellow Lubavitch Jews. (The Grossbaums are adherents to the Orthodox Jewish Chabad movement, though LifeTown is nondenominational and open to all.)

In the Livingston center, funded by donations from 2,700 people, according to the couple, there are local touches: Next to a dim room of softly undulating colored lights where visitors can decompress if they get overstimulated is a sandbox full of sand to simulate the state’s beaches and a photo mural of the Jersey Shore.

The couple said they draw inspiration from Rabbi Menachem Mendel Schneerson, the leader of the Lubavitchers who died in 1994 and is known as the rebbe. Forty years ago, Rabbi Schneerson referred to children with intellectual disabilities as “special people,” in his correspondence.

“The rebbe spoke of seeing them as a patient with the hope of being cured, rather than a patient we’ve given up hope on,” Rabbi Grossbaum said. “That makes every difference in the world — that we’ll never give up on them.”

Since they opened the facility, which charges a maximum of $35 per client per visit, the Grossbaums have tried to make it more inclusive for a wider spectrum of people with disabilities. This week, Words, a bookstore in Maplewood, N.J., that employs intellectually disabled people as booksellers, opened a shop in the complex.

And on a recent afternoon, crews were adding a computer with Braille keys next to a new wall covered in fabrics and tactile objects where the blind can explore different sensations. A pool with a long ramp for wheelchairs is under construction.

Dr. Buchanan, of Autism New Jersey, praised the notion of LifeTown, but warned that simulated living experiences are not a panacea for the complex challenges of those with autism. Practicing in the controlled environment of LifeTown was not enough, she said; it takes repetition, patience and understanding to expand the benefits to the larger world.

For Jerry DeFrance, an afternoon spent inside the brightly lit and quiet town was a welcome start. His family feeds and dresses the 26-year-old man, and an aide must shadow him constantly for his safety, as he lives with Down syndrome, which makes autonomy difficult.

Yet on a recent Thursday, he pedaled a tricycle by himself, past Linda’s Salon and Sarah Jane florists inside the mock village. When he cycled up to one of the town’s four stoplights, it glowed red, and he braked hard.

“I did it!” Mr. DeFrance said triumphantly.

On the pavement, his caregiver’s eyes widened. “I was so happy, so proud, just to see that,” said Junior Docteur, his aide.

“This place,” Mr. Docteur said. “They need it so much.”

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