Leslie Decko knew something was wrong with her son, Max, soon after his birth.
“He was my second child, I could just feel it,” she says.
But doctor after doctor in the Deckos’ Chicago suburb of Lake Forest, Ill., disagreed. They told Decko she was just being nervous.
But Max wasn’t thriving. He wasn’t growing. He couldn’t eat jarred baby food, couldn’t hold a bottle. “Boys are slower,” she was told. When she told them Max wasn’t moving his limbs and that he didn’t cry, she was told, “You’re lucky to have such an easy baby.”
Finally, Decko took Max to Dr. Michael Hammer in Lake Forest, Ill. Hammer turned the baby over in mid-air and when Max didn’t exhibit a parachute reflex, he told Decko that her son had had a stroke in utero and diagnosed Max with cerebral palsy. “At that point, I wish he had said cancer because then we’d have a game plan,” Decko says, 15 years later from her rented town home in Potomac. “I walked away and cried.”
She soon started Max in therapy for five days a week, three to four hours a day. Older sister Ariel was enrolled in an all-day Montessori preschool to allow her mother time for Max’s therapy sessions.
The Deckos were doing five days a week of speech, occupational, physical and developmental therapies at $190 per hour. Her husband lost his job. After 8 1/2 months, he found employment only to lose it again after six months. Leslie stood in food pantry lines, her brother helped pay rent.
“We depleted all our assets,” she says. “Every single thing — the condo, 401K, IRA, everything — gone.”
The strain caused the couple to separate. Leslie, originally from Potomac, moved her children back to her hometown, where Max began attending the special needs program of the Montgomery County Public Schools. But after four years, she was dissatisfied that her son was learning only life skills like getting dressed and telling time.
Last year she enrolled Max in the SULAM program for children with special needs, at the Melvin J. Berman Hebrew Academy. “Now he can read at a sixth-grade level,” she says.
The Deckos are just one of a growing number of families looking to Jewish day schools to educate their special-needs children.
But Decko says she is struggling to keep Max in what she calls “the best special needs program.”
“Who can afford $46,000?” she said, referring to tuition. “Unlike college, there’s no FAFSA [Free Application for Federal Student Aid]. The doctors said it’s a luxury, but it’s not a luxury when you want your child to be productive.” She says she doesn’t know if she will be able to continue to find money to keep Max in SULAM.
Right hand, left hand
SULAM was founded in 1998 by Amy Wervin, whose son, Jacob, has special needs. As Jacob got older, Wervin began looking for ways to keep him in a Jewish day school. The program was originally hosted at the Torah School of Greater Washington, where it still maintains a satellite program. It found a permanent home at the Berman Academy, an Orthodox day school in Rockville. The two partner to provide for special-needs students.
“It’s right hand, left hand,” explains Rabbi Elisha Paul, who heads SULAM. “We do math. They do Hebrew, or vice versa.”
Working this way, the program is able to respond to the social needs of a wide spectrum of children — from those who have a high level of participation in mainstream classes to others who need to work one-on-one with teachers.
There are 30 full-time SULAM students and an additional 40 Berman Academy students who receive additional help with study skills, executive functioning skills, in-class support, psychological and social support, and family counseling.
“In the Deckos’ case, we’re serving the family as a whole,” Paul says. “They have needs with car pool, with financing. The whole family is being served. We believe in partnership with the host school and with the parents, each one helping the other.”
Although Berman Academy is an Orthodox school, Paul says SULAM is not an Orthodox program. He notes that there are SULAM students who would otherwise attend public school or the liberal Charles E. Smith Hebrew Day School. He believes there are families who would choose day school education if SULAM was available in other schools.
“We want to keep students in Jewish day schools, no matter where,” he says. “I believe this is an area where day schools need to get better.”
Rabbi Mitchell Malkus, head of school for the Charles E. Smith Jewish Day School agreed, “Some Jewish day schools, including CESJDS, have done an excellent job assisting students with learning disabilities where support of specialists three to four times per week allow for student success. At CESJDS, we have a team of nine full-time specialists and a director of educational support services and have had significant success. In addition, we have done significant training with our classroom faculty on differentiated instruction. Where the field has been less focused is for students with very significant learning disabilities and those with severe physical disabilities. In the general educational world, addressing those needs requires very specialized programs at a cost significantly more than the average tuition in a day school or requires a separate classroom. It is in that area where Jewish education has not focused and has not developed programs.”
The goodness quotient
The pressure on day schools to serve special-needs students began with the passage of the Americans with Disabilities Act (ADA) in 1990. It required public schools to accommodate special needs students, but raised expectations on private schools as well. Before the ADA, most special-needs students did not go to school. According to Paul, the trend in education is to broadening the scope of students served. Day schools have followed suit.
“We’re maturing as a community, and we want to embrace and value all members of the Jewish community regardless of unique differences.”
Jewish values drive SULAM, Paul says. “Doing mitzvot — everyone can add something. We’re less focused on intellectual development and more into the holistic, whole person development. The strength of character. The goodness quotient.”
He tells about a day Max wasn’t in school because he was sick. His classmates asked Paul if they could use class time to call their friend. Paul said yes, and explained to them that there is no better way to practice Judaism than by calling a friend who is sick. “In this nurturing environment, you don’t fall through the cracks. It is natural for his classmates to say, ‘Can we call?’”
This all comes at a price. Tuition in SULAM is 1 ½ times the typical tuition, Paul says. “Like any school, we don’t charge what it costs to educate the student.” He notes that the school does try to help families in need. “We don’t want cost to be a barrier.”
He says SULAM will work with the families to find other financial resources, such as grants from synagogues and community organizations. This year, a family anonymously sponsored a full scholarship. Paul notes SULAM is trying to raise awareness in the community for the need of similar gifts.
He believes there are several dozen families with special-needs children who would choose Jewish day school education if it was affordable. “Families have same dreams for children with special challenges as for those with typical challenges. They want the same opportunities for kids to have growth and this includes Jewish growth.”
The goal is for children to become integrated into and embraced by the Jewish community, regardless of need, he says. “That’s what parents want, what the kids want, what everyone wants — to be full members of the community.”
And when the day school says it lacks the capacity to welcome a child, what the family hears is that the child cannot be a part of the school community and is being left out of the larger Jewish community, says Marc Kramer, executive director of RAVSAK, the Jewish community day school network.
“I think why this is particularly painful in Jewish community day schools is that we are the community’s aspiration for the Jewish future captured in this little entity we call a school,” he says. “Jewish federations and funders say this school represents who we are and who we ought to be. Jewish day school, you have to take the child, because it is family. It’s different.”
But Kramer, who has a special-needs child, cautions not to mistake a school not yet able to accommodate every learner as a school unwilling to accommodate every learner.
“At the end of the day, it is immoral for a school to accept a child they cannot serve well. And if a school cannot accommodate, if they do not have the skills and resources to meet a child’s need, they will not serve that child well.”