You have a baby who’s born prematurely.
You worry and you worry and then you worry some more; you know that outcomes vary widely, and you don’t know what to expect.
By six months, you know that whatever the percentages are, you haven’t beaten them. Your child — say your son, let’s say his name is Jacob — has cerebral palsy.
You already know that you love this child as deeply, as thoroughly, as fiercely, as you love your older son, who does not face Jacob’s challenges, and as much as you later love your two younger sons. You know that you have to do everything possible to protect him, prepare him for the world, and integrate him into the community.
To understate, it’s not easy. Not only are there emotional and character-testing issues, there are logistical and financial ones as well. But without trying to gloss away any of those issues — without turning this into a fairy tale, which it is not — there is love and hope and growth and possibility and community and friendship and life in the story of Jacob Adler, and in his relationship with Sinai Schools.
On Sunday, February 26, at Sinai’s annual dinner, the school will present a film created by its managing director, Sam Fishman, and Abigail Hepner Gross, its communications director. As it does most years, the film will showcase the school’s accomplishments by focusing on one student; this year, “Jacob’s Footprints” will focus on 18-year-old Jacob Adler and his parents, Debby and Hillel. As it does every year, this year’s film will evoke strong emotion — often you can hear sniffles over the soundtrack — but it is unlikely to be sad, or at least only or even mainly sad. Instead, the films are moving because the stories they tell are real; they inspire but they do not sugar coat.
Jacob Adler and his Sinai classmates sit together in a classroom at the Joseph Kushner Hebrew Academy.
Jacob Adler has a host of medical issues that he, his family, and his school have to negotiate. He has some cognitive problems. His muscles are weak; he cannot walk or move easily; he does, however, have a sophisticated, high-tech wheelchair that allows him to get around rapidly and independently. He cannot use his hands very effectively, and because the muscles in his throat and mouth that produce sound also are weak, he has had problems making himself understood. After many years of work, he is much better at speaking, though, and his many friends can understand him now.
Many friends? That’s because one of the things about Jacob is that he has so many of them. “His smile is contagious,” his father said. And that’s what everyone says about him. When he smiles, he radiates, and he almost always smiles.
It’s one of those on-the-one-hand, on-the-other-hand things. It would be unrealistic to downplay the hurdles Jacob and his family have faced and continue to face; it also would be unrealistic not to marvel at how far he’s come, at how his family’s determination propelled him forward, and at how the Sinai Schools worked with him, and with them, to get him to where he is today.
Hillel and Debby Adler always pushed for Jacob to have everything he could have that would help him be whatever he could be. That included a wheelchair. “He got his first wheelchair when he was 6 or 7,” Hillel said. “He was really little. Until then, he was just crawling on the floor. It was a power wheelchair, and he drove it to the window, and sat there, staring out.” He was seeing the world from that new perspective for the first time, and he drank it in. “I remember him sitting for hours, staring out the window,” his father said. The window that most drew him looked out on the front yard, the street, and cars and people going by.
There was another wonderful thing about the view from the window. “He could get to it by himself,” Hillel said.
The Adlers had to remodel their house, to accommodate both Jacob and his wheelchair. Halls and doorways had to be widened, and a room on the ground floor became Jacob’s bedroom, with a wheelchair-accessible bathroom. The Adlers also added an elevator to the staircase; “Jacob doesn’t go upstairs often, but he can go upstairs,” his father said. It didn’t seem appropriate to have any of the house off limits to him.
Wheelchair technology keeps evolving; “in Jacob’s first year in Sinai, he got a wheelchair that could be lowered all the way down to the floor,” Hillel said. “They are specifically for little kids, for when there is circle time, and everyone is sitting on the floor.” Jacob was able to sit on the floor too.
Early on, Jacob learned to use a walker.
Jacob gets a new wheelchair every five years or so. Ask Hillel Adler if that’s because he outgrew the earlier one each time, and Hillel very politely will set you straight. It’s nowhere near that simple. “They are very customized,” he said. “It’s not just the size of the chair. Every child is different. Some need more support for their trunk, or their arms, or other parts of their body. Every part is separate.” Jacob recently got a new chair; the list of parts his parents received had more than 100 entries. His wheelchair has a USB port, so he can charge his phone; it has a light, so he can be seen at night, and a horn, for when he’s in traffic. It’s made to go both inside and outside, and Jacob drives it all over.
Of course, paying for it always is an issue; the Adlers constantly have to fight with their insurance company. What the company defines as a luxury — and therefore something for which it does not have to pay — the Adlers know to be a necessity.
“Having a child with special needs is stressful,” Hillel Adler said. “It adds a layer that most people don’t have to deal with.” But they, like Sinai, are guided by the goal of helping Jacob to live as ordinary a life as possible, shaped by a realistic understanding of his abilities, desires, and limitations. “We try to let him lead as normal a life as we can,” he said. “We try to let him test the waters, to see what he can and can’t do. We never say no to anything he wants to do, even though at first it might look like he doesn’t belong. Once you get to know him, you see that he can be like anybody else.”
As a young child, Jacob “bounced around from school to school” until the Adlers discovered Sinai, Hillel said. “He never had a sense of community, of having friends, of having things in common with other people.” That changed at Sinai.
“Not only was it able to meet his educational needs, it met his social needs,” Hillel said. “Of course, every child — for that matter, every human being — has social needs, but they are almost even more important for a child like Jacob.
“When you are different, when you are used to having people look at you like an outsider — and that’s natural, when you see someone in a wheelchair you shy away — but now everybody knows Jacob, gives him a high five. He has lunch with his typically developing peers at Sinai. And now that goes beyond Sinai, to the weekends and the evenings, and for someone like Jacob that’s tremendously important.
“The self-confidence he gets from Sinai allows him to extend himself.”
When Jacob first started at Sinai, he went to the program in Livingston. “I have known Jacob this entire time, from when he was 8,” Sam Fishman said. “I have learned so much from his family and from Jacob. What I learn from Jacob — what I think the whole world learns from Jacob — is that each of us has challenges and each of us also has gifts. With Jacob, his challenges are immediately and obviously visible. So are some of his gifts.
“Jacob has a beautiful, magnetic smile, sparkling eyes, and a sweet, pleasing disposition. He has a radiance, the ability to make you fall in love with him. And we saw that.”
Sinai accepts each student it feels it can help; its professionals study each child, assess strengths and weaknesses, and figure out what the school can do before it offers admission. “We have to be sure we can tailor a program to give the child what he or she needs in order to progress and develop,” Mr. Fishman said. “We thought that if we put together a program with the right teachers and the right therapies and the right aides, we could bring out what we hope is the best of Jacob.”
He did not overlook the scope of Jacob’s physical and mental problems, a combination that made him among the most challenging of Sinai’s students.
Jacob, right, and another Sinai student benefit from music therapy.
He told a story. “When he started, the elementary school we were at then was a wonderful, nurturing environment, but the building was not accessible. Jacob was getting bigger, and he was getting around in a motorized chair, which also was bigger.” The job of carrying Jacob and the wheelchair grew harder.
But that wasn’t the real problem.
“Our dean at the time, our founding dean, Laurette Rothwachs, said to me, ‘We really need to move Jacob to the other elementary school, at Kushner, in Livingston.’ It’s a supermodern building, with wide hallways.” But he still worried about finding people to get Jacob up and down stairs.
“Laurette said, ‘It’s not about that at all. There always will be educators with strong backs and big hearts, who will feel privileged to carry Jacob up and down the stairs. That’s not what this is about.
“‘It’s about what Jacob needs — the ability to be independent, to get around like any other child, to get the independence he needs in his life.’”
So Jacob went to Sinai Elementary at the Joseph Kushner Hebrew Academy in Livingston. “His parents, naturally, were concerned about how to get him there,” Mr. Fishman said. “His mother, Debby, said to me, ‘How are you going to get him to Livingston? The school might as well be in China.’
“But the other remarkable thing about Jacob and community was the philanthropy he has inspired,” Mr. Fishman continued. “It has been breathtaking. When we decided that Jacob would do best in our elementary school in Livingston, we decided that sending him there wasn’t just about getting him there. We wanted him to have a normal inclusive experience getting there. We decided that what we needed was a wheelchair-accessible school bus, so he and his friends could go together.
“Remarkably, there was a donor — an anonymous donor — who stepped up. The bus cost $100,000.
Jacob is helped onto the school bus that takes him to Livingston.
“I remember saying to Debby that in Kushner, with those wide hallways, Jacob was going to be the coolest, most popular kid in school, in his motorized chair. Everyone is going to want to play with him. And it turned out to be true, and the positive social experience, the feeling of being surrounded by all these people, encouraged him. It helped bring out his strengths.”
After elementary school, Jacob went to Karasick Shalem High School — one of Sinai’s four high school programs — at the Torah Academy of Bergen County in Teaneck. Esther Klavan directs Shalem at TABC.
Many of the situations Jacob faced in high school were similar to those faced by typically developing students — it’s easy for adults to forget how intimidating the world is when you are a freshman in high school — although the challenges were deepened by his disabilities, she explained. “His limitations involve the physical, academic, and social realms — the social area is his strength, but even there he also requires help,” she said. “Some were challenges shared by typically developing high school students as they move to high school, in terms of navigating a new building, a new schedule, new expectations, and others were unique to him.
“What is similar to other high school students but even more typical of our population are the challenges associated with advocating for oneself, developing effective problem solving and communications skills in order to get your meaning across. Everyone has those challenges — but the difference between the Sinai students’ experience and others’ experience is that we teach them the soft and interpersonal skills to empower them to become more capable adults.”
Other kids have to pick those skills up on their own. “My experience with my own teenagers, and with TABC students, is that they can do that,” she said. “They don’t have to sit in a class where they are taught things like street safety. Our kids are vulnerable in the world around them. All students share these challenges, but our kids need them directly addressed.”
Because TABC is in Teaneck, and because its head, Rabbi Yosef Adler (who is distantly and coincidentally related to Jacob and his family), also leads Congregation Rinat Yisrael, the Adler family’s shul, Jacob was entirely at home at Shalem.
“Jacob’s bar mitzvah was remarkable,” Mr. Fishman said. “This is part of what Sinai does for all of our boys and girls as they approach bar and bat mitzvah age. We work with them to make that experience meaningful and memorable, to help them get the experience that you want any child approaching that milestone to get.
Jacob and his brother Elie celebrate at Jacob’s bar mitzvah party.
“Because Jacob’s physical challenges make it difficult to understand him, we worked for two years to get him to the point where he could not only learn the material — he read a little from the Torah, and led the service — but also to get him to the point where he had the confidence and the ability to articulate.
“In the film, Rabbi Adler talks about Jacob going up the ramp and holding the Torah and leading, and when he said the Shema Yisrael, you could hear a pin drop. He talks about how the shul stood in awe and reverence. It was a very moving thing, and something that people never forget.”
Jacob became part of the fabric of life in Teaneck. “If you hang around town, it is hard to avoid seeing Jacob going up and down the streets, to the places where kids hang out. Part of what we meant by calling the film ‘Jacob’s Footprints’ is that Jacob really has taught the community that this is normal. This is the way it should be. You see Jacob surrounded by his friends, doing what the other kids are doing. It wasn’t always this way. Jacob has taught us a lot.”
Jacob’s parents, Hillel and Debby, beam as he graduates from Shalem at TABC.
“Because his older brother was at TABC for a year, when Jacob started at Shalem, and because there were a host of local community kids who Jacob grew up with in shul and around town there, the whole experience was like coming home,” Ms. Klavan said. “That created the feeling of belonging in him, but there were challenges that came along with it. ‘Here I am — but where am I?’ His friends were in other classrooms. Socially he belonged with them, but academically he did not. We were able to craft the right delicate balance for him.
“For example, our students all are matched up with the TABC students as lunch buddies, in the school and outside. We set Jacob up with lunch buddies, and he went out with them for lunch many times a week.
“Any experience going on at TABC, whether it was during the school day or after school, was open to him if it was not academic — Shabbatons and sports events. Jacob was successful on his own in part because he already had the relationships he had built long before coming here.”
Part of the high school program at Sinai is vocational training; students need transportation to get to their jobs. Because Jacob travels with his wheelchair, once again he needed a specialized van, and once again the community stepped up to the challenge of providing him one. Anonymous donors bought a van — a significant financial commitment — so Jacob could get wherever he had to go.
Part of Sinai’s art is “to balance promoting independence within a world where students forever will need to be dependent,” Ms. Klavan said. “The balance is something we work hard on with our students; to help to find their inner strength.” They learn to advocate for themselves, to learn “coping tools and frustration-tolerating strategies.”
Friends graduate — From the top, counterclockwise, Moshe Stuart, Yitzi Rothschild, Jonathan Seidel, Yoni Greenberg, and Jacob Adler. All graduated from Bergen County day schools this spring, including Jacob, a Sinai student. (Courtesy Sinai Schools)
“I’d known Jacob my entire life, from around town and in shul and because our mothers went to school together, but I’d never been in school with him until ninth grade,” Yitzi said. Soon, Jacob became part of Yitzi’s group of friends.
It’s not that the differences between them weren’t real, and it’s not that they never got in the way, but it’s that in many ways that didn’t matter.
Friendships would start slowly. Part of it is that TABC kids take seriously what they’re taught, and so “there are so many kids who always wanted an opportunity to work with kids with special needs but didn’t have the opportunity before, so when they had the opportunity, they jumped on it,” Yitzi said. That meant, for example, that they would be glad to “buddy up,” as he put it, with Sinai students at lunch. “It’s not always easy,” he said. “But you ask them questions, and you figure it out.”
And then sometimes friendships develop the way friendships often develop, he added. “You see people day in and day out, and then because you see them every day, you say hi and wave, and it’s easy, and it makes them feel like a million bucks. And every day they see you and say hi, how’re you doing, long time no see, stuff like that, and you are forging more of a relationship. And then conversation will start.” And it grows from there.
Jacob holds a sefer Torah at TABC; the friend at the left is Yitzi Rothschild.
Sometimes, he continued, a Sinai student will be doing something, going someplace, that interests you, so why not? You go together.
“Jacob is always looking for fun, for new activities, and he knows how to have fun,” Yitzi said. He loves playing basketball, dodge ball, whatever it is that’s going on. “It won’t always be easy, and sometimes you need to bend the rules a little bit, but we do it because we can do it, and it’s more fun for all of us, so why not?” Yitzi said.
And you can talk to Jacob, he added. “He’s not always the most clear, but as soon as you get used to it, you can understand him.”
Just as friendships between Sinai students and students in the schools where Sinai is housed are normal friendships, so too are the relationships between siblings. (That is not to deny that enormous additional unavoidable complexities are present as well. The relationships certainly are complicated.)
Hillel Adler remembers that when Jacob was a freshman at Sinai, his older brother, Elie, was a senior at TABC. “One day, Jacob was rolling down the hallway in his wheelchair, and Elie walked by and gave him a punch in the stomach,” Hillel said. “A playful punch,” he added. It’s a brother thing. It was the beginning of the school year, and “people didn’t know yet that they were brothers. And a lot of them said to Elie, ‘Did you just punch that kid in the wheelchair in the stomach?’”
This fall, Sinai added a new program, for 18- to 21-year-old men, called Karasick Shalem High School at Heichal HaTorah, also in Teaneck. (Until it opened, young men stayed at TABC until they were 21; then and now, young women stay at the Karasick Shalem High School at Ma’ayanot.) The program helps students gain the skills they’ll need as they continue to mature, and eventually to age out of the programs that schools and state aid can provide them. “The school at Heichal was very much created with Jacob in mind,” Ms. Gross said. “At the beginning of his 12th-grade year, Jacob asked when he would be graduating. So Heichal is allowing that older cohort to go through high school with their peers, graduate with their peers, and then go on, like their peers, to another school. Yes, it is still high school, and there are still academics, but the goal has shifted for these older students into life skills, preparing them to become independent adults, giving them vocational training.”
Once again, Jacob inspired philanthropy, Mr. Fishman said. Just as an anonymous donor spent $100,000 on the bus that took him and his friends to Livingston — that bus remained on the Bergen-to-Livingston run — and another donor bought a van that took him and his peers to their jobs from TABC — that bus still plies that route — now “we needed a vehicle to take him around, and once again the community stepped up,” he continued. “The van at Heichal came from a donor who is new to us, and wrote us a $47,000 check.
“These are good people we live among.”
Jordan Silvestri directs Sinai at Heichal Hatorah.
“Jacob is a very lovable guy,” Mr. Silvestri said. Students like Jacob, in fact, are the reason that he chose to work in “the world of individuals with disabilities, 10- plus years ago,” he said. “One of the things that pushed me most is that I wanted to do something that was important on a personal level, not to do something for money but to change lives. I want to be able to instill in my kids that people come in all shapes and sizes; they look different and sound different. That doesn’t mean that they don’t have the same quality, the same dignity, the same ability to accomplish.
“Jacob personifies that ideal.
“For his entire life, he has been affected by his limitations, by what he can and can’t do. But I am in awe of how much joy he has; how much excitement and laughter and fun he exudes, even though under the surface there is a feeling of deep loss, deep emotional feelings. He deals with that on a daily basis, seeing his peers do things that he can’t do and thinking ‘Why not me?’
Jacob at the Kotel.
“We cannot sugarcoat the fact that people have real lives and real disabilities that they deal with. But then everyone has disabilities — they just don’t necessarily see them as disabilities. If I have an anger problem, if I don’t have the ability to lose weight — they are real flaws, disabilities that affect our ability to be more complete, more able, more accomplished human beings. Jacob’s struggle can be my struggle, although the details will be different.”
That is not to say that Mr. Silvestri is downplaying the extent of his students’ challenges. “But I never look at myself as being more able or more capable than my students,” he said. “I was gifted with a different story than they were, and they have to deal with far more than the rest of us.”
Hillel Adler, Jordan Silvestri, and Sam Fishman all mention that one of Jacob’s chief frustrations is that he cannot drive a car, although by now most of his friends can. “He feels that he can drive his wheelchair so well, why not a car?” his father said. But as Mr. Silvestri points out, “with the advent of self-driving cars, he will have a vastly different life.”
Jacob has worked in a nursing home, a food pantry, and a pizza store so far, his father said; “he is trying to figure out where his skills are best met. I think that we all are figuring it out.” He now works in the cafeteria at Yeshiva University, where Elie is a student. “It always has been a goal of his to follow in his brother’s footsteps and go to YU,” Hillel said. For now, at any rate, he cannot, and working there helps him feel that he’s living at least part of his dream. In the future, who knows?
In general, the question of Jacob’s future is a big question mark. “We don’t know,” his father said. “But we are starting to look into it now. He has great social skills, and a great desire to do things, so if he could fit into something vocationally that would be great. If he will live at home or in a group home — we don’t know that yet.
“But we do know that Sinai will help.”
Sinai’s approach — personalizing a student’s school experiences, tailoring it for the ways each learns best, setting high but realistic standards, and doing all of it with care and love — works so well for students with special needs that it is hard for parents of typically developing students not to look at it with some envy. “We have Sinai parents who have children in other schools, and they say to us, ‘Why can’t you teach this to the other schools?’” Ms. Gross reported.
Sinai’s administrators and staff, though, keep their eyes on their goals. “One of our missions is to change hearts and minds and attitudes, and work on dispelling the stigma,” Mr. Fishman said. “There are people who over the years might have looked at Jacob and said ‘Why bother with him?’
“But now you look at Jacob, and you see who he is; you hear his friends talk about him as a friend, as someone who is not at all judgmental, who can listen to his friends talk about their problems with girls, or about social issues, and always knows what to say.
“They are genuine, deep friendships.”
So yes, Sinai can change the world, one person, one student, one amazing wired mechanized wheelchair, one wheelchair-accessible school bus at a time.
Originally published at http://jewishstandard.timesofisrael.com/jacobs-footprints/