Friday, July 5, 2013

A Family’s Medical Challenge Becomes Aliyah Necessity

Most people immigrate to Israel for spiritual, religious or familial reasons, and medical care doesn't usually factor into the equation. 

But in the case of Iris Kowen’s family, that was not the case.
Living in the Holy Land was always the ideal, she says, but it was the issue of medial necessity, and special needs potential that prompted the family to consider it seriously.
Kowen’s son, Shai, was born a seemingly normal, happy baby. But at four months old, he had his first seizure and was diagnosed with epilepsy, she relates.
“By age 16, following years of evaluations and misdiagnoses, Shai was labeled profoundly disabled with mental retardation. His condition included a series of side effects that severely limited his motor skills and left him entirely reliant on a wheelchair and the assistance of others,” she says
But though her son’s obstacles were great, Kowen says he possessed a spirit and curiosity that belied his disability.

“For me, the biggest challenge in having a severely disabled child was the fear that he would never be able to maximize his potential.  While I understood that Shai had limitations, I was equally aware that these shouldn't prohibit him from developing to his fullest,” she says.

The family  became “nomads of sorts,” moving from Florida, to Toronto, and back, crossing much of North America in search of the best care, community, and family support they could find.
In America, the style was one of group homes that focused on basic care, and the family struggled to find alternative options.
“I always felt that there had to be something out there that could bring out the potential I saw in my child. This gut feeling ultimately became our major motivation for making aliyah,” Kowen says.

It was a television commercial that caught her eye and introduced Kowen to ALEH, Israel's largest network of facilities for children with severe physical and cognitive disabilities.  “We were touched by their mission and offered to help the organization in Florida, never thinking that we would one day be the recipients of its care. After all, there was a language barrier and we had careers to consider.”
But a chance visit to Israel allowed Kowen to visit the organization’s facility in the Negev, where she was shocked by the high level of care, and all the different forms of therapy she saw in action there.

“I was particularly touched by the involvement of so many volunteers, groups of cheery men, women and children running the gamut from high school students to high tech workers. We realized that we were not getting younger, and we needed think more seriously about the future, specifically Shai's long-term care,” she says.
With a newfound determination to secure the kind of care for Shai that he clearly required, the family prepared for the move, difficult as it would be.

“It was especially difficult for our two teenage daughters who had to create their own social and educational frameworks out of thin air when we started from scratch in the Negev.  But we acclimated and made it work,” Kowen says. Shai today receives care at ALEH Negev - Nahalat Eran, a village providing residential care for children with severe disabilities, through young adulthood.

“I know that moving to Israel was the best choice for my family," says Kowen, who today serves as International Relations director for the facility. "Here in the Negev our possibilities are blooming.”

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