Child with Down syndrome has strong family support

Yelli (center) strikes a pose next to her parents, Chani and Rabbi Ze’ev Smason. Yelli is 11 years old and has Down syndrome. 

By David Baugher, Special to the Jewish Light

Like many 11 year olds, Yelli Smason is happy, very sociable and loves animals. She is deeply spiritual as well — a fact her father, as a rabbi, is proud to relate.

“On Thursday evening, when we’d talk about the upcoming Sabbath we’d say Shabbos is coming,” said Rabbi Ze’ev Smason, who leads Nusach Hari B’nai Zion congregation in Olivette. “But Yelli, with a big smile on her face, will say ‘Shabbos Kodesh’ (Holy Sabbath) is coming.”

Yelli also has Down syndrome, a genetic condition that results from a full or partial extra copy of a certain chromosome that causes the expression of an array of physical and developmental characteristics. Affecting some 400,000 people in the United States, Down syndrome is one of a number of conditions that create unique circumstances for families who sometimes find themselves waging a constant battle to promote acceptance of their children while navigating the best path for them to reach their full potential.

For Jewish families that challenge frequently has an extra layer of complexity — that of providing Judaic learning and sense of belonging in the community. The questions of how best to accomplish those goals don’t always have easy answers. 

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A different set of potentials

For some, like Yelli, those answers involve a blend of public school and Judaic instruction from her family.

“The challenge for us and the dilemma,” said Smason, “was to ensure she received proper Jewish education in addition to her other schooling but we felt that would be much easier for us to supplement through a nurturing spiritual environment at home. At the Jewish schools, they didn’t have the Special School District resources available that she very strongly needs.” 

Smason said Yelli has been a great blessing to her family as well as to her public school classmates and teachers who love having her there. He said that understanding a child with disability simply means looking at a “different set of potentials.”

“Where exactly any person’s potential lies is the great unknown of course,” he said. “Neither you nor I nor Michael Jordan’s mother when he was a kid knew what our potential was.”

Smason said there is a clear desire in the Jewish community to accommodate children with special needs but the financial hill is a difficult one to climb. He said it is often a matter of deciding priorities.

“The synagogues are easier,” said Smason. “To be fair to the schools, the resources that are required to be able to integrate and mainstream a special needs child is a very formidable task. You are talking about salaries, tens and tens and tens of thousands of dollars to be able to incorporate a student whereas in a synagogue…the only thing that’s needed is a mixture of love, warmth and acceptance. The children for the most part just fit right in.”

The challenge

It’s a problem Cheryl Maayan, head of Saul Mirowitz Jewish Community School, knows all too well. For many special needs families, a day school education is fraught with complications, some of which schools themselves struggle with in trying to provide a home for as many Jewish children of all backgrounds as they can while trying to control the enormous potential costs involved.

“It absolutely is a challenge being faced by schools around the country,” Maayan said. 

SMJCS does keep an occupational therapist and a speech therapist on hand to serve children who require extra attention. The school has had students in need of those services, including those who suffer from mild autism. 

Maayan said that generally, the school will develop a “care team” in such situations to allow staff to communicate with one another and with parents regularly, sharing observations and implementing goals for a given student.

“The idea is that the occupational therapist, the speech therapist, the learning specialist, all of these people are helping coach the classroom teachers because we want these children to be successful even when their specialists aren’t in the room,” Maayan said.

If the child needs more than what SMJCS can provide, then parents can foot the bill for the excess though the school is happy to coordinate with the selected service providers. That could include anything from extra tutoring to “shadowing,” where a trained professional hired by the family follows the child throughout the day. Maayan said her school has never had a student with a shadow but would certainly be open to the idea.

In the end, Maayan said her institution tries to guide parents toward the best course with a focus on helping a student reach his or her potential based on what SMJCS can provide.

“We have had situations where we feel like we’d be actually doing the child a disservice by keeping them in the school because we weren’t feeling as though we were successful with helping the child meet their goals,” she said. “Those are really difficult situations but we make them out of genuine love for the child.”

Other models

In other parts of the country, particularly the East Coast, a unique community model for dealing with special needs in Jewish day schools is taking hold.

“They couldn’t take in children who were on the higher level of the autism spectrum or who have Down syndrome or children who are severely learning disabled or have behavioral difficulties,” recalls Beverly Bernstein. “That’s how we came into being.”

“We” is OROT, a group that formed to partner with Jewish day schools in the Philadelphia area to provide new opportunities for students who required additional services. In one respect, the model is not entirely different than that found in St. Louis. Parents still pay an additional charge for the extra help but OROT does make the process more integrated. It has a presence in five day schools where children with special needs can receive extra attention. That may mean part of the day spent in a different classroom with a parallel learning track or being mainstreamed for some classes and kept separate for others.

The key is that the onsite nature of the services makes mainstreaming a cafeteria-style experience. Children can utilize the general classroom in areas where they are stronger but remain in a more sheltered environment for their weaknesses.

“It’s actually very hard to describe the OROT program because we don’t say, ‘This is the program, you have to fit into it,’” said Bernstein, educational director for the 14-year-old group. “We look at the children and develop a program around the child.” 

Parents pay $8,500 above the regular tuition for the extra assistance. Financial aid is available but Bernstein said the minimum cost is $2,000. The program employs eight teachers and each is responsible for case managing the child no matter what part of the school he or she is in.

The concept is modeled off an idea called Keshet in Chicago and similar dynamics have developed in communities in New Jersey, Florida and Rhode Island though Bernstein said it still hasn’t caught on out west.

“Past Chicago, I don’t really know of any programs like this,” she said.

‘A part of the solution’

Still, St. Louis isn’t without its own set of Jewish resources. One local group, Ohr Atid, runs a Sunday school at Smason’s NHBZ. The organization used to provide a wider menu of services but resources have been tight of late.

Betsy Zimbalist, secretary of the group, said she hopes the Jewish community will continue to work hard to do more to support those with special needs. 

Still, it is at least a different dynamic today, she said. People are more open about disabilities than a few years ago.

“In the world that I grew up in there was no such thing as a special need. Everything was invisible,” she said. “The world that we live in now, everything is much more present, even something as simple as going outside with an oxygen tank.”

Ohr Atid’s other effort is a joint program with Chabad. Situated near the Washington University campus, the Chabad Ohr Atid Sunday Torah (COAST) program just finished its pilot year. The weekly effort had four participants this time around but organizers are hoping that future incarnations will bring in even more students. 

Similar to a worldwide Chabad program known as Friendship Circle, the concept has students with conditions such as autism or Down syndrome partner with individual volunteers from Washington University to participate in games, songs and other activities centered around discrete Jewish educational themes.

“For example, when there are Jewish holidays coming up, that’s a good thing to focus on because they will study it in depth in our program,” said Chana Novack, the initiative’s director. “Then they will go home and experience the same holidays as a family and in their synagogue and community. We’re able to focus on an aspect of Judaism that’s meaningful in their life other than just for the two hours we’re together.”

Trying to stretch that limited time into something that will make a substantial difference is part of the continuing effort at COAST.

Novack said the Jewish community is warm and accepting but there are practical limits on resources.

“With the size of our (Jewish) community it is difficult for us to meet all the specialized needs in a way that can be met in bigger cities,” she said.

And that hits at the heart of the issue. Novack said that a program like COAST is more supplemental than comprehensive. She suggests parents use it as a resource but not a complete answer. 

 “We’re trying to be helpful. We’re trying to be part of the solution,” she said. “Raising a child Jewishly is really a team effort of parents, schools, the community, synagogues and the organizations. Every aspect helps but it’s really a team effort of everyone together to raise a happy, educated Jewish child.”

A natural part of life

In the end, parents of special needs students end up utilizing the educational resource that holds the most promise for their children. For many, that means the Special School District of St. Louis County.

Generally, SSD works with parents to draw up an individualized education program, or IEP, to provide a blueprint for the student.

“It’s a collaborative process,” said Lynne Midyett, assistant superintendent. “We sit down with them and go over the assessment data to see what the student’s strengths and weaknesses are, what the goals are, and what the concerns are.”

Though SSD has been around since the late 1950s, the district’s role was greatly strengthened in 1975 by federal legislation that mandated schools receiving dollars from Washington provide an appropriate education for students with special needs. The law caused significant changes in public education nationwide. A release from the U.S. Office of Special Education Programs estimates that in 1970 only one in five students with disabilities were educated in schools and, in fact, many states had laws excluding children with issues ranging from developmental disabilities to deafness.

Larry Opinsky is as familiar with the process as anyone. The B’nai Amoona congregant’s daughter, Lilly, has Rett Syndrome, a genetic disorder generally considered to be a form of autism. He’s also vice president of the parent advisory council for children with disabilities in the Parkway schools where he works with district officials to plot a path forward for students with special needs.

He points out that disability is not just someone else’s issue. Instead, it is a natural part of life many of us will experience as we get older.

“That means you’ve reached an age where your body starts to break down and you have to use a walker so those steps are hard,” said Opinsky, who also chairs Missouri Protection and Advocacy Services, a group that provides a voice for those with disabilities in the state. “The ramp is good for everyone, not just ‘I’ve got to do it so that kid can get into this building.’”

Like many disability advocates, Opinsky is a proponent of mainstreaming in the public schools. He feels that the entire community benefits when diversity is present in the classroom.

“It is much better for teachers, administrators and the community at large to understand that kids of all abilities are educated together and understand each other so that once they arrive in adulthood, they are not viewed as though they can’t do things,” he said.

Whatever the answer, Opinsky echoes Smason’s sentiments about a different set of potentials. He said acceptance is the key.

“It’s about what the community needs to do to evolve so that we understand that all people have abilities,” he said, “they just need some help accessing them.”