JERUSALEM (Sep. 11)
Esther Wachsman was the mother of five healthy, active sons when she learned that she was pregnant with twins.
It has been seven years since the twin boys were born, one of them with Down’s syndrome.
Since the day that Rafael, who is moderately-to-severely retarded, was born, Wachsman admits she has been living with “a tremendous burden.”
In the course of picking up Rafael from an afterschool program one day, she explained that “he needs 100 percent, 24-hour-a-day supervision. He cannot be left alone because he can endanger himself and his surroundings. He doesn’t understand not to turn on the gas or run into the road.
“I have three boys in the army at the moment, and three in school,” she added. “My husband and the boys are helpful when they’re home, but that isn’t often enough. The day-to-day burden falls on me. If it weren’t for Shalva, I don’t know what I’d do.”
Shalva, the Israel Association to Relieve the Handicapped Child and Family, is helping families like the Wachsmans cope with the problems associated with caring for a disabled child.
Established in 1990 by Kalman and Malky Samuels, Shalva runs a year-round afternoon program that serves 80 retarded and autistic children, from toddlers to young adults.
Once a week on a rotating basis, the kids sleep over, allowing their parents and caregivers a much-needed rest. In the evenings, Shalva’s building serves as an informal meeting place for mentally retarded teen-agers and young adults.
Shalva also runs a two-week summer camp program and serves as a respite for parents who cannot care for their disabled child for short periods of time, perhaps during the week of shiva or after a birth.
Located in a rented house in the religious neighborhood of Har Nof, Shalva provides creative, loving care to children who would otherwise be stuck at home in the afternoon and evenings.
FILLS A GAP SOCIETY HAS YET TO FILL
After spending the morning in school, the children are bused to Shalva, where they stay until 6 p.m.
Shalva is free to all families. Since it receives no government funding, it relies solely on donations to provide its services.
Kalman Samuels, who, along with his wife Malky, recently received the President’s Award for Volunteerism, says that Shalva fills a gap that Israeli society has yet to fill.
“A handicapped child requires constant attention and stimulation,” he said. “The school day ends at 12:30, leaving the child and his parents to fend for themselves the rest of the day. Most Israeli children attended chugim (clubs) in the afternoon, but these children usually don’t have that option.”
Though he is reluctant to blame the government, Samuels, who emigrated from Canada two decades ago, makes it clear that it should do more to help parents of disabled children.
“It’s ironic,” Samuels said, “that it’s the parents who don’t institutionalize their children, who work so hard to keep them at home, who suffer the heaviest burden, both financially and otherwise. The government pays for a child to be institutionalized, but except for a small stipend of a few hundred dollars per month, the parents are on their own.”
He maintains that “people don’t realize what the parents of a disabled child are going through. They don’t want pity, so they keep up a brave front. Nobody realizes that they are totally cracked inside.”
Samuels speaks from experience. In 1977, his son Yosef, then a healthy 11-month-old baby, received a routine DPT vaccination. Complications ensued, and Yosef became totally deaf and blind.
He recalled that “after the inoculation, Yosef had violent neurological symptoms. He had convulsions, his eyes rolled in his head. We thought he had suffered brain damage. A relative of ours, a famous physician in New York, got us in touch with doctors in the U.S., so we decided to move to the States.”
Upon their return to Israel four years later, the family struggled with Yosef’s disability — and the needs of their other, healthy children. At the age of 8, Yosef made a Helen Keller-like break-through, thanks to a devoted teacher who taught him how to sign into the palm of her hand.
‘EVERY CHILD HAS POTENTIAL’
Now an extremely bright, energetic 18-year-old with an active social life, Yosef attends a special school in the mornings and an afternoon program much like Shalva.
Using his own son’s remarkable achievements as a model, Samuels believes that “every child has potential.”
This is the guiding principle at Shalva.
On a warm day in late August, the ambulatory kids romp in the garden, where a swing and slide are always occupied. Those who cannot walk, due to cerebral palsy or other disabilities, are tended to by staff members and volunteers. There is an almost one-to-one ratio between children and caretakers.
At 4:30 a volunteer musician from the neighborhood arrives, and the children are herded into the living room for a sing-along.
After some more playing, dinner is served. Those with good coordination feed themselves vegetarian hot dogs and chocolate pudding. The volunteers assist everyone else.
Aaron Shushan, who has come to pick up his son, Yossi, 18, said his family could not function without Shalva.
“It means a great deal to us,” said Shushan in a very quiet voice. “Yossi is a very moody child. Sometimes he is too sleepy, other times he is hyperactive. Sometimes he bothers our other kids, or he can hurt himself. This way, we know that for a few hours every afternoon he is well taken care of.”
Esther Wachsman seconds the motion. She says that while she considers Shalva a “personal life-saver,” her top priority is her son’s welfare.
“The staff here coordinate with Rafael’s school teachers, so the learning is continuous. I know he’s happy here. When I say, ‘Get ready, we’re going to Shalva,’ he runs to the car. That’s a blessing.”