When Kalman Samuels and his wife, Malki, founded Shalva, an Israeli organization that helps children with physical and developmental disabilities, 24 years ago, all they knew about caring for children with special needs was what they had learned from caring for their own son, Yossi.
Yossi was 11 months old when he became deaf, blind and hyperactive following a routine vaccination in 1977.
Little did they know that this would set them on a course to create a program in Israel that has benefited thousands of children and their families.
Samuels, a Vancouver native and a father of seven, will share his story next week at a two-day conference on Current Trends in Paediatric Neuro-Developmental Disabilities, organized by Zareinu Educational Centre of Metropolitan Toronto, Shalva and Hadassah Medical Centre in Jerusalem, to be held May 26 at the Schwartz-Reisman Centre in Vaughan.
His lecture, titled “Empowerment of the child with chronic disability: my personal experience,” will focus on his journey caring for his son, and how he and his wife developed a centre that is considered a leader in the field of disability awareness and intervention in the Middle East.
Speaking to The CJN from his home in Jerusalem, Samuels explained that his ordeal began the day his wife took Yossi for a routine vaccination.
“There was a problem with this batch, because a number of children were injured. As soon as he got the vaccine, he had a terrible jerking motion and he became lethargic, and when I came home from my studies that night, Malki was hysterical.”
Upon confirmation that the vaccine was to blame and that Yossi would not recover from his injury, they decided to go to New York, where they enrolled him in a world-renowned school for the blind called the Lighthouse.
“Malki struggled with Yossi, who came home every day at 1 p.m. as a three-year-old, and her day was over. Literally, everything focused around that child. We were there for almost five years. There was some progress, but not a lot… We decided that in spite of it all, we didn’t have much of a life over there,” he said, and they decided to move back to Israel.
He said many well-intentioned people suggested that they institutionalize Yossi.
“Malki used to cry and say, ‘God, I didn’t take Yossi anywhere except from you, and I’m not giving him away. If you ever decide to help Yossi, I will be dedicating my life to other mothers with their problems with their children.’”
Samuels said when they returned to Israel, they enrolled Yossi in a school for the deaf in Jerusalem.
When Yossi was eight years old, a deaf special education teacher named Shoshanna Weinstock taught him to spell using symbols, with a technique reminiscent of the one Annie Sullivan used to teach Helen Keller to communicate.
“It was an amazing moment when she went ballistic, and she came in screaming in her deaf intonation, ‘He’s got it! He’s got it!’ And his life was forever changed,” Samuels said.
“Malki turned to me and said, ‘It’s payback time. I made a promise and I know exactly what I want to do to help people.’”
With a $50,000 donation made by an old friend in Vancouver, the Samuels opened Shalva in 1990. Shalva, which means peace of mind in Hebrew, began as an after-school program with 10 kids.
“Little could we have dreamed that this little mom and pop would continue to grow in this really amazing way.”
Shalva, funded by the Israeli government and private donations, currently operates out of an 18,000-square-foot building and provides services to more than 500 people with special needs from infancy to adulthood through programs and round-the-clock therapy, run by professionals and volunteers. Samuels said about seven years ago, the Israeli government granted them land upon which to build a national Shalva centre.
“We are in the midst of a $50-million project, which will be 200,000 square feet, 11 floors, with amazing facilities… It’ll be a centre for inclusion in which typical and non-typical kids will be studying together and playing together.”
Samuels said that the Shalva programs benefit both the children with special needs and the parents who struggle to cope with giving their children the proper care.
He said the biggest challenge in raising children with special needs is training yourself to look at your child’s accomplishments through the eyes of the child.
“It is not your journey as a parent, it is your child’s journey. You have to stop looking at this child with your measuring stick. Because with your measuring stick, he doesn’t measure up too well,” Samuels said.
“My sister was a well-known psychologist in Canada, and she said, ‘He’s not the problem, you are. You’re still dreaming he’s going to be a rabbi. You’re still dreaming you’re going to play ball with him. He’s not going to be a rabbi and he’s not going to play ball. But that doesn’t change the fact that his life can be full of accomplishments… So wake up. Smell the coffee.’ I cried like a baby. And it took me years and years of awareness to try to do that.”
In spite of his disabilities, Yossi, 37, continues to realize his dreams, Samuels said.
Yossi dreamed of meeting former U.S. president George W. Bush and former British prime minister Gordon Brown, and he met them both, in 2007 and 2012, respectively.
Yossi, who rides horses, dreamed of riding an elephant, and last year, he travelled to Thailand to realize that dream.
Samuels said when he saw a photo of his son on an elephant, he broke down in tears.
“The message for me is to never stop dreaming and not to give up on realizing your dreams. Yossi doesn’t.”