Eye to Eye
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Rabbi Shaya Benstein believes in reaching autistic kids by getting down to their level, literally, and his techniques have people calling him a miracle worker
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The small but upscale strip mall is still under construction the sounds of drilling vibrating through the air and the clatter of lumber echoing across the almost-empty lot. But some of the space in this expanse of brick a few miles south of Lakewoodis already occupied and a corner of the parking lot has been taken over by a small group of children and their morahs splashing in a sprinkler to slake the summer heat.
The kids it turns out have come from upstairs in the building where the Building Bridges New Jersey preschool is housed. As they shriek in the jets of water they look like a regular bunk from a day camp. But these kids are on a very different path. Every one of them has been diagnosed with some form of autism a condition characterized by challenges in both verbal and nonverbal communication repetitive behaviors and difficulties forming relationships. Building Bridges exists to help autistic Jewish kids grow and blossom as much as possible with the goal of mainstreaming them into regular yeshivos.
The Building Bridges space accessed by a side door and a flight of steps to an airy entry looks like a regular preschool. It has classrooms filled with toys and mats and climbing structures in bright primary colors. We’ve come here to meet Rabbi Shaya Benstein the school’s director who’s garnered a reputation as something like a miracle worker for children with disabilities. Building Bridges is a new enterprise for him; inLakewood he’s better known from his tenure at SCHI (School for Children with Hidden Intelligence) where he served as the beloved director for ten years.
Unlike the lively classrooms down the hall Rabbi Benstein’s office is a small minimal space with a single metal bookshelf stuffed with tomes about autism and childhood syndromes. The only adornment is a framed poem decorated with butterfly cutouts. Written by a grateful mother it describes how Rabbi Benstein helped bring her “butterfly” son out of his cocoon.
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Given his impressive CV — master’s degrees in early childhood education and special education from Adelphia University and over 25 years of special-ed experience I have to admit I was expecting to encounter someone more in the standard school principal mold: Large authoritative maybe a bureaucratic type with a booming voice. Instead Rabbi Benstein is tall and spare with a short fair beard ready smile and a looseness to his movements. He’s self-assured but in a very understated way; he speaks softly listens carefully and radiates an all-consuming focus on helping kids.
Shaya Benstein might not have initially fit into the “box” of what a special-ed school director would look like. But then again Benstein doesn’t fit easily into any box. And that is precisely the secret of his success: He refuses to put children in boxes either.
On the Spectrum
According to Autism Speaks, an advocacy group for parents of autistic children, autism affects about one in 68 children in America (about three million people in the US). Boys are almost five times more likely to be afflicted. Most puzzling is that in the past 40 years, the autism rate has grown tenfold, a statistic that can only partially be explained by greater awareness and diagnosis.
“The epicenter of autism in the US is in New Jersey, just outside Lakewood,” Rabbi Benstein says. “Here the occurrence runs as high as one in 44 kids. Nobody really understands why there’s been this increase.”
Nor are the causes well understood, and most researchers believe a combination of factors are responsible, including genetic mutations and risk factors such as maternal age, illness during pregnancy, or a difficult delivery. Consuming adequate folic acid during pregnancy appears to lower the risk.
The deficits characteristic of autism may include under- or overreacting to stimuli, an inability to carry out movements in sequence, difficulty forming sounds or words, and other issues that impede children from forming relationships with their parents and others. While about 40 percent of autistic children possess average to above average intellectual abilities, another third remain nonverbal.
In the frum community, schools are springing up to service the autistic population. In Brooklyn, there’s Shema Kolainu, Yeled V'Yalda, Reach for the Stars Learning Center, and others; in Lakewood, in addition to Building Bridges, Imrei Binah and SCHI service autistic kids. But such special education is expensive — the national average runs around $60,000 per year — and Benstein notes that some New Jersey families move to New York, where the government is more generous with support services.
Autism is considered a “wide spectrum” disorder, meaning that the diagnosis can apply to mildly affected, highly functioning individuals (Temple Grandin, a professor of animal sciences at Colorado State University, is a well-known example), and to people with such severe disabilities that independent living will never be an option. Since some autistic people have exceptional abilities with numbers, music, or visual skills (“savants”), there has been speculation that some of history’s greatest geniuses, like Mozart and Albert Einstein, were autistic.
In fact, the definition of autism as “wide spectrum” seems so wide one wonders if it isn’t useless in the end.
“You have to look at each child’s particular strengths and deficits,” Benstein says. “Each case is unique.”
Up to the Challenge
Shaya Benstein himself is unique in the yeshivah world. He grew up in a traditional home outside Detroit, with a penchant for drawing, music (he plays the trombone and once thought about a music career), Eretz Yisrael, and the outdoors (he’s had training in rock climbing and as a nature guide). In 1985, at all of 17, he picked himself up after high school and went off to experience Israel, taking his first job in the vineyards of a yishuv in the Shomron called Kochav Hashachar.
“My parents had the real American mentality — when you grow up you’re independent, you make it on your own,” he says.
He liked it so much he stayed, taking on a variety of jobs to support himself, including using his artistic talents to draw cartoons for animation and working with Israeli nature photographer Noach (Neil) Folberg. During a stay in Har Nof, he met Rabbi Shaya Ostrov, and quickly became a ben bayis in the Ostrov home.
“I remember him telling us he had an ambition to circle the globe taking pictures,” Rabbi Ostrov told Mishpacha. “He was creative, a great storyteller, had tremendous derech eretz and menschlichkeit. He became part of the family.”
Ostrov and Benstein are still close, and continue to share a 5 a.m. (“more or less,” Ostrov confesses) morning chavrusa session.
“I did the tour of Eretz Yisrael yeshivos,” Benstein relates. “For a while I was in a hesder yeshivah in the Gush. I was in Torah Ore for three years, where I’d clean the place and do odd jobs to cover the costs.”
While there, he met Rabbi Zvi Zobin, who approached him to help work with children who had reading difficulties. Rabbi Zobin’s individualized approach to helping children piqued his interest in special education, and introduced him to some methods that would serve him in the future.
Benstein eventually returned to the US, hoping to pursue a shidduch. The shidduch didn’t pan out, but there he was in the US, and he found a job working at Camp Chush.
“My father worked in special-ed,” Benstein says, “but I never really got a good view of what he did.”
He found he really enjoyed working with special-needs children and had his own "chush" for it. The summer worked out so well that director Naftali Weiss proposed he work at the Chush school during the year. Benstein began working at Chush and spent time learning in the Mirrer Yeshivah in Brooklyn. Later, he took a job at Yeshiva Darchei Torah working in the resource room. There he would spend the next seven years, working with challenged children and helping create the yeshivah’s vocational program, as well as a small preschool intervention program for kids with various educational challenges.
He became close to Darchei Torah rosh yeshivah Rabbi Yaakov Bender, often driving Rabbi Bender's mother back and forth to Brooklyn to visit her son's family in Far Rockaway. Benstein also frequently spent Shabbosim with the Bender family. At Darchei, he acknowledges learning tremendously from Dr. Rivka Gutkind, who headed the resource room, and ultimately made his shidduch with one of her daughter’s teachers.
“Shaya has a passion for helping people, and he has a good feel for putting all the pieces together about a child,” Rabbi Bender says. “It amazes me how he can meet a child for one hour and hone in on what the child’s needs are and what intervention is needed.”
After seven years at Darchei, Rabbi Bender suggested Benstein take a position at a new PTACH school in Baltimore, later called Weinberg Academy. Benstein still glows with nostalgia when he speaks about the time he spent there.
“We had a beautiful campus, on 300 acres,” he recounts. “It included a historic mansion, a preschool, and a high school called GIFT. The idea was to service the entire community, to include a larger range of students, including those who needed more flexibility. We had remedial resource rooms, and worked to mainstream those we could.”
Benstein could have happily continued at GIFT for many years, but unfortunately the funding dried up, and the yeshivah had to close. At that point, Asher Eismann from SCHI in Lakewood happened to be looking for a new director for his school, which services a large and diverse population.
“Eismann’s goal was to make a good thing even better,” Benstein says.
Down on the Floor
It was at SCHI that Benstein began practicing a relatively new system of autism care, called DIR (Developmental, Individual-difference, Relationship-based) Floortime therapy. For many years, ABA (applied behavioral analysis) had been the therapy of choice for working with autistic children. Based on behavior modification principles, it seeks to shape more appropriate behaviors. For example, it can teach motor skills like self-feeding, or social skills like how to respond appropriately when someone greets you, by rewarding the child each time he performs a behavior correctly.
“You see results from ABA. But it doesn’t change the person,” Benstein says.
Therapists in ABA typically visit a child in the home, preferably for 25 to 40 hours per week (an expensive proposition when not state-subsidized). Therapists set goals such as increasing eye contact, diminishing socially inappropriate behaviors, and increasing verbal communication, using repetition and reinforcements to shape the new behaviors. While parents are encouraged to continue the work of the therapist, they aren’t usually part of the therapy session.
Autistic children can be taught through ABA to play the role of a socially interactive person, but they’re only play-acting; they haven’t become social. To truly change a child from the inside, to treat the relationship rather than merely the symptoms, you have to get into the child’s world. That’s where the Floortime technique comes in.
Originally promoted by Dr. Stanley Greenspan and Dr. Serena Wieder, Floortime involves literally getting down on the floor with a child and trying to get into his world, observing how he moves and behaves and engages. Parents are required to attend these sessions so that they can continue the therapist’s work at home.
“Therapy is only an hour or two a week,” Benstein says. “But the child is with his family all the time, and we believe in a systems approach in which everyone in the child’s life is working with him.”
The DIR Floortime model holds that all childhood learning — both cognitive and social — results from children’s relationships with their caregivers. “The secret is affect and interaction,” Dr. Wieder told Mishpacha. “Relationships are the vehicle for learning, and we have to let a child know he’s valued, through tone and touch.”
It’s extremely important to start intervention early, so that resolvable issues don’t spiral into less easily resolved issues. Benstein gives the example of a 17-month-old infant who cries a lot,turning his head away and crying whenever one of his parents comes close to him.
“The parent naturally feels terribly rejected and frustrated,” Benstein says. “If this goes on, the parent will continue to withdraw, and it becomes a vicious cycle where both sides are discouraged from bonding. Then development begins to lag.
“You have to get in early to see why the baby is turning his head. Is he unable to connect and engage, or to attend to a face? Is he overwhelmed by the visual stimulation of another face so close to his, so you need to keep a bit more distance? If you can understand the problem, you can start to build a real relationship, and further development unfolds naturally from there.”
But he acknowledges that it isn’t easy to hone in on a child’s individual challenges; it takes experience, astute observation, and knowledge of the norms of behavior for different ages and conditions.
“A child with disabilities is like a sieve — you have to figure out where the holes are,” Benstein says.
For example, are the deficits motor, emotional, attentional, linguistic, cognitive, social? Perhaps there are sensory issues or perceptual issues (as in the classic example of children assumed to be unable to read when they simply can’t see the blackboard).
During Floortime sessions, therapists pay close attention to a child’s movements, trying to understand their meaning. The therapist may reflect the child’s movements back to him in an attempt to create a relationship and understand the purpose of those movements.
“Shaya can look at two kids doing the same thing, and understand that each is doing it for a different reason,” says a longtime friend. “He uses a lot of affect, often exaggerating it, to engage the children and build a relationship.”
It’s easy to see how Benstein, who has a gentle, low-key manner coupled with a creative soul, could get down on the floor with children and draw them out through play.
“In Floortime, we use excitement and the love of play to build relationships,” Benstein says. “We don’t need artificial reinforcements like in ABA. No M&M’s. We want the social relationship to become reinforcing all by itself.”
Chaya M. tried other programs for her preschool-age daughter before coming to Building Bridges, but says this is the only treatment model that got results. “Other therapists would come ask our daughter questions, but she’d feel tested and withdraw,” she said. “Some suggested she had selective mutism. But Rabbi Benstein is so animated, and manages to get a back-and-forth going with her. Today my daughter speaks, has friends in the classroom — she’ll even talk to me about her ‘best friend’ Moshe.”
Benstein also believes in keeping an eye out for what autistic children can do well. “I had a nine-year-old child here who just passed a college physics exam,” he says. “At GIFT, we had a technology and robotics class with kids who were brilliant but had social, behavioral, or learning issues. They built a hovercraft, and their final exam was to take a bunch of junk we gave them and build a robot that could go into a box, pick up a can of Coke, and come back.”
Obviously not all kids are that talented, but most have strengths that may be eclipsed by their deficits, and Benstein’s a firm believer in seeing the whole picture, in looking behind the symptom to get a handle on what the issues really are. For that reason, he dislikes easy labels like “ADHD” and “autistic.”
“The syndrome approach doesn’t tell you who the child really is,” he says. “A child with motor and linguistic issues might end up with an autism diagnosis when that’s not appropriate. Or a child with sensory issues may be so overwhelmed, he withdraws from people, but he’s not autistic.”
(Most autistic children do have sensory issues, but the majority of kids with sensory issues aren’t autistic.)
Benstein’s assessments of children are much more fine-tuned and individualized than the boxes used for standard diagnoses.
In general, Benstein opposes any one-size-fits-all chinuch for children, a philosophy he’s followed all his life. “In a town like Lakewood, it’s hard even for many children without disabilities to find their place, because the options are too narrow,” he says regretfully.
His Own Drummer
Benstein enjoyed his years at SCHI, but eventually felt the yen to work in an environment where he could concentrate on the newer approaches to autism, like Floortime, and put his specialized skills to work without the constraints of government guidelines.
Building Bridges New Jersey was the solution for him. Instead of being funded through the Board of Education, it’s a private school funded by health insurance. The specific criteria needed to receive funding for children depend on an autism diagnosis. These constraints keep the numbers somewhat low, but the school nevertheless enrolls about 60 pupils during the year.
He shows us around the school: A gym-like area where a therapist is helping a child learn new movements, classrooms filled with children playing with therapists, and a classroom with toys and mats where Benstein himself does much of his work.
“You can tell a lot about a child by which toys he chooses,” he says, picking up a Playskool-type figure. “A younger child usually likes this type of figure, with rounded lines and features, not too differentiated.”
He next picks up a well-muscled action figure. “Older children start to prefer more developed figures that can be manipulated in more ways. But if a 15-year-old is choosing a more babyish toy, you have to ask why.”
Chaya M.’s daughter responds best to sensory play, and Chaya relates that Benstein would work with her on a swing. “He shows us how to focus on a goal in our play sessions,” she says. “For our daughter, the goal is reciprocal play. He’ll ask her, ‘Should I push you?’ He knows she likes going fast, so he’ll ask, ‘Should I push you very slow?’ She’ll yell, ‘No!’, and then he’ll ask, ‘Should I push you very fast?’ Later he’ll sit next to her on the swing, or put a doll next to her, to draw her into an interaction.”
Benstein’s a big believer in the value of play; it teaches children to respond to others, to learn about themselves, to initiate interactions with other kids. Children who have trouble sitting still in school can often settle down if allowed 20 minutes of play time every couple of hours. In fact, he notes, one of the problems of modern life is that children are expected to spend unnaturally long hours sitting in school. Even afterwards, they often sit in front of screens or are brought to structured activities.
As we admire the classrooms, a therapist stops by to return a borrowed book on therapy. “I liked it so much I ordered a copy for myself,” she enthuses. “Do you mind if I take another book?”
“That’s what I look for in my staff,” Benstein remarks. “Enthusiasm, and a genuine desire to grow.”
Benstein makes sure his staff gets lots of training — 50 to 60 hours over a two-year period — and Chaya M. remarks that “when a therapist gets stuck in her work with a child, Rabbi Benstein always has new techniques to suggest.”
Every staff therapist presents case reviews to his or her colleagues, on a revolving basis. “The parents are part of the case reviews as well, and we all participate. It helps us look at the child in a different light.”
He insists on parental participation. Parents have to come on time for their children’s sessions and participate; they’re given “homework” to do, and if they don’t do it, they can’t continue coming.
“There’s no magic fix, no instant gratification,” he says. “I’ve been around the block enough times that I see what works. The right therapy, plus hard work, is what makes the difference.”
Those parents who truly put in the time and effort, he emphasizes, are the real heroes in the struggle to help their children. To further assist them, he puts out a monthly newsletter that includes information, inspiration and notes from teachers, and he has instituted a parent support group that’s a lifeline to parents like Chaya.
“I used to feel so isolated,” she says. “It’s so great to meet with parents who share the same fears and challenges.”
Benstein’s mentor, Dr. Serena Wieder, comments that in a field largely dominated by women, it’s important to have a male presence. “Shaya is good at engaging the fathers,” she says. “Our model is to work with the entire family, including parents and siblings, and to be attuned not only to the children but to their families and surrounding culture.”
Benstein lives, eats, breathes his work; he reads voraciously on the topic — several research articles a night and several books a week, and attends conferences when he can.
“My passion is creating therapies to help kids,” he says. He’s either busy supervising or therapizing or doing assessments; on the side, he runs a private practice, with clients coming from all over North America and Israel for his evaluations and therapy.
That doesn’t leave him much time for his old interests in art or the wilderness, although he did once lead a father-son wilderness trip with autistic boys. (“Intense!” he recalls. “A lot of group dynamics work.”) But now Benstein finds himself pursuing adventurous explorations and artistic endeavors of a different sort. He’s reconnoitering the frontiers of the human spirit, and working like a sculptor on young minds, shoring up the weak spots and aiming to reveal the beauty lying hidden within the material.
(Originally featured in Mishpacha, Issue 625)
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