ST. PETERSBURG, Russia (May. 19)
It was not the ideal start to Misha Pevzner’s new Jewish life. At his first Passover seder, the autistic boy thought the jagged edge of a broken piece of matzah was a freshly cut piece of wood, and that it would embed splinters in his skin.
He was afraid, so Misha, then 12, started yelling, disrupting the seder. When his mother tried to remove him, Misha’s screams got louder. Finally, she dragged him home.
That was in 2002.
Last month, Misha, now 15, came to another seder. He danced arm in arm with other special-needs children, and he correctly answered Passover trivia questions. The change was striking.
As a reward, Misha watched as a sticker with his name on it sailed skyward, carried aloft by balloons.
Misha’s transformation from seder nuisance to seder star is the relentless work of his mother, Tamara Elkovskaya, 56, who quit a prestigious job as a scientific researcher so she could devote herself to him. That was in 1995, when her 5-year-old first displayed symptoms of autism.
Elkovskaya, though, is quick to shift the credit for her son’s success to Adain Lo, a St. Petersburg organization that for children and young adults — most of them Jewish — with special needs. Most such children are confined to their homes, as Misha was for several years before his mother discovered Adain Lo.
Today, Adain Lo is believed to be the only Jewish organization in Russia that helps people up to 35 years old who have special needs. Adain Lo works with people who have mental or physician disabilities, including autism, behavior and learning disorders and retardation, and it works with their families as well.
Its director, Genia Lvova, says that Russian special needs services are about where such services were in the United States in the 1970s. Most special-needs children are shunned by society and left to rot away in their homes without ever going to school.
Russian nonprofit agencies are underfunded or nonexistent, and the Russian government “is the most important part of the puzzle — and it’s missing,” Lvova said, adding that in St. Petersburg credible institutions assist only the blind, the deaf and people with Down syndrome.
“Special needs people are hidden in Russia,” said Lvova, who taught herself English by listening to the Voice of America under her kitchen stove during the Soviet era. “We work in a secular Jewish community, and part of that identity is being responsible for other people. That’s our real-life Judaism.”
When Misha was first diagnosed, a Russian doctor told his mother, who like 65 percent of the mothers of special-needs children at Adain Lo is unmarried, that her son “cannot do anything, shouldn’t go anywhere — and there are no programs” for him. Mother and son spent the next year confined their apartment, 45 minutes from the picturesque canals of downtown St. Petersburg.
“I even went to the toilet with him,” said Elkovskaya, whose grandfather was a rabbi in Ukraine before the Russian Revolution. Misha lacks motivation, she added. He’d prefer to sleep all day, and he doesn’t eat unless he’s told to. He’s often aggressive, and takes his rage out on the furniture.
Elkovskaya eventually found a private specialist who taught Misha to read and write. But the $160 monthly pension the two receive from the state didn’t cover the tuition, so Misha’s father chipped in. Eventually Elkovskaya heard about a state school for slow learners; it did not focus on children with autism but there as a teacher there who gave Misha private lessons, free, for two hours a week.
The bullying children who stalked the halls, though, saw Misha as a “target, not a partner,” his mother said. When he was 11, Misha had never played with other children.
Then came Adain Lo. Now Misha has friends, and he has developed social skills. Today he can do math problems on a computer, he studies Jewish culture and he participates in arts and dance programs.
Elkovskaya is involved with a parent support group. When she broke her leg, other parents helped her care for Misha.
All students’ families have access to Adain Lo’s free services, which include daily activities, meetings with psychologists, and weekend family retreats.
“Every day Misha asks if we’re going to Adain Lo,” Elkovskaya says. “It’s given us an opportunity to live. Without it, his social behavior would be much worse. Now, if a day passes without big troubles, it’s a festive day. And it’s given me consolation in returning to Jewish roots.”
That’s true as well for Nina Ryndina, 44, whose daughter Ania, 12, has epilepsy. She used to black out up to eight times a day. Now she suffers just a few attacks each months, thanks to the discounted medicine and free treatment provided by Adain Lo. That’s a relief, because Nina’s $100 pension and part-time job as a painter would not cover her costs.
Ania spends her days painting on canvas. She’s confined not to an apartment but a room. Her home is a communal apartment — it’s a Communist-era living arrangement, where neighbors share a bathroom and a kitchen. Their neighbor has threatened them with “gas attacks like those in Iraq.” The Adain Lo psychologist has helped the mother and daughter create a civil home life, although Ania still rarely leaves the dreary bedroom.
Ania seems to be able to go to school but her mother said that a full day would be too tiring. The government gives Ania eight hours of teachers’ home visits each week. Still, the girl and her mother prize the weekend sessions at Adain Lo, where Ania mixes with “regular kids.” They love the sessions so much, in fact, that they’ve missed only two since they began going in 2001.
“Before she painted, but now she knows how to paint, Ryndina said of her daughter. “She’s confident and says ‘I’ll be painter.’ She can be totally open there. She’s no longer afraid of being Jewish.”
In 1990 Adain Lo was a grass-roots Jewish club, providing Shabbat for a dozen families. In 1994 Lvova met a woman who had just returned from Israel with her handicapped son. The mother asked about services for special-needs children.
“I’m very pragmatic,” Lvova said. “I never have visions, but then I had a sandstorm in my brain and told her ‘We have nothing — but we will have.’ “
Today, with an annual budget of $1 million, half provided by the American Jewish Joint Distribution Committee, the Jewish Community Federation of Cleveland and half from local donors, Adain Lo offers a wide range of activities to roughly 1,000 families.
The struggle to professionalize endures. In September, Adain Lo will move into the new Yesod community center, among the largest Jewish community buildings in Russia. Lvova is trying to raise local funds so the group can afford the hefty rent. She also hopes to recruit more teachers with experience with special-needs children. The agency now has only one specialist on staff — it relies heavily on student volunteers.
But for clients like Misha and Ania, Adain Lo has already given the gift of life.