Yossi and the Love of a Father
By Kalman Samuels
Kalman Samuels embraces his son Yossi. Courtesy of Kalman Samuals.
Kalman Samuels’ high school graduation photo. Courtesy of Kalman Samuels.
I grew up in Vancouver, Canada, a true child of the sixties and enjoyed a rich childhood with a great education and warm, somewhat traditional family. After graduating high school with basketball and academic scholarships, I went on to study philosophy at the University of British Columbia. After my first year, I embarked on a trip that would alter the course of my life.
Having set out to France to study Western Civilization, at the request of my mother, I stopped in Israel for what was meant to be a two-week stay and ended up extending my visit to explore my Jewish heritage. This experience was so transformational for me that I decided to stay and pursue rabbinical studies. It was during these years that I met and married my dear wife, Malki.
Malki and I were blessed to welcome our eldest daughter and in 1977 we welcomed our second child, our son, Yossi.
Yossi as a baby. Courtesy of Kalman Samuels.
Yossi was born a healthy, typical child and we rejoiced as he reached each developmental milestone in his infancy. When Yossi was 11 months old, Malki took him for a routine DPT vaccination at the local children’s health clinic, where unbeknownst to us and the public at the time, the Israeli Ministry of Health was having a severe problem with batches of the vaccine, which they did not put a stop to, for almost 6 months.
When I returned from my studies at the end of that day, I found Malki hysterical, crying that something was wrong with our Yossi. His eyes were shimmering, and he was not responding, despite being a happy and engaged baby just earlier that day. We knew that something was very wrong.
We began to seek answers from local medical professionals in hopes of helping our son who was experiencing concerning, erratic movements which we later learned are called convulsions.
From the moment we saw the neurologist, who recognized that Yossi’s condition was due to the vaccination he had received, we could not get any further information. Clearly the government had put down that no one would talk and so no one spoke.
With no internet at the time, and no access to other medical resources, there was a deep trust in doctors, who were the gatekeepers to medical information. Without their cooperation and willingness to be forthcoming, we were very stuck.
We turned to my uncle in New York who was serving as the head of orthopedics at the Maimonides hospital in Brooklyn. He suggested that we confer with doctors in the U.S. who would be willing to assess Yossi and speak freely, sharing their diagnosis.
One of our first stops in New York brought us to a highly esteemed neuro-ophthalmologist who conducted the same tests that the neurologists in Israel had, but instead of withholding information, he told us that Yossi’s optic nerve was atrophied, and he would never see again.
Until that diagnosis, we had great hopes of Yossi recovering but the finality of the diagnosis dashed those hopes. Yossi’s hearing loss began to set in shortly afterwards and by the age of three, he was deaf. The finality of his diagnosis was oppressive, and we began to understand that Yossi would never recover.
Our young lives got flipped on their heads as we lost all communication with our son who was now blind, deaf, and acutely hyperactive. As Yossi was thrust into a world of silence and darkness, we feared we would never be able to communicate with our son again.
Life was extraordinarily challenging during Yossi’s youth. Yossi was growing and needed to be watched 24/7 to ensure that he should not hurt himself or his siblings since he was inquisitive. Malki had a full-time job taking care of Yossi, in addition to our four younger sons, born in quick succession following our relocation to New York.
While we were living in NY, Malki had a visitor who, like many before her, suggested we remove Yossi from our home and institutionalize him to lessen the burden on our family. Malki was deeply upset by this and later that evening cried to G-d and made a promise “I am never taking Yossi out of my home, but if you ever decide to help my Yossi, I am going to dedicate my life to helping other mothers with their challenges with children with disabilities.”
After a few productive years in New York, where Yossi received exceptional care, the time had come to move our family back to Israel.
Yossi was now 8 years old and attending a school for the deaf in Jerusalem. One of his extraordinary teachers, Shoshana, who was deaf herself, was particularly determined to break down Yossi’s communication barrier. For days on end, she would put one of Yossi’s palms on the table and in the palm of his other hand, she would spell via symbols, the five Hebrew letters for the word “table”. At some point, Yossi lit up and Shoshana amazingly recognized that this was Yossi’s Helen Keller moment, his breakthrough to communication.
Yossi and family. Courtesy of Kalman Samuels.
As parents, we didn’t understand the magnitude of what Shoshana was telling us. How could we comprehend that our child, with whom we had not communicated since his infancy, had a window into the world? Shoshana continued to prove Yossi’s grasp of communication and she worked tirelessly to teach him the Hebrew alphabet and many words which Yossi could sign back to us. We were all effectively writing in the palms of his hands.
Sometime later, Yossi’s speech therapist said that based on Shoshana’s work, she was going to teach him how to speak Hebrew. This seemed like mission impossible but incredibly she taught Yossi how to speak Hebrew synthetically and, all of a sudden, we had a child we could sign to and he could respond verbally. These were exciting, emotional times for us as our son emerged from his silent world into one of extraordinary communication. Our lost hope had been given new life.
Without wasting time, Malki sat me down and said “It’s payback time. I made a promise to G-d and He heard my prayer and helped Yossi”. She knew exactly how she intended to fulfill her promise and she needed my help.
Yossi at a young age. Courtesy of Kalman Samuels.
Malki had a vision for an after-school program that would keep children with special needs engaged in therapeutic activities, while providing their families with a much-needed break until evening. I realized that in order to actualize her promise, I would have to find funding and that proved more difficult than I could have imagined.
It took a number of years to find someone willing to help us to hire several staff members and to rent an apartment in which to create our center. In 1990, we established Shalva, a word mentioned once in the Bible in Psalms 122:7, “May there be peace in your walls and “Shalva”, (meaning serenity), in your palaces”. Our mission was to enable families who were experiencing chaos to find a level of serenity.
Shalva began in a small, rented garden apartment with 5 children, all with severe disabilities. Malki, together with a disability professional, ran an afterschool program for these children while I was at work. The goal was to connect the government operated school programs offered in the morning with our after-school program. The kids would be bussed directly from whichever school they attended, to Shalva where they were offered a variety of therapeutic and recreational programs and driven home by Malki at 6pm, after enjoying a hot evening meal.
Shalva in the 1990s. Courtesy of Kalman Samuels.
This program significantly changed the lives of these children’s families. The parents could now work a full day and dedicate time to other facets of life including giving attention to their other children and household responsibilities. When their child returned home from Shalva at 6:30pm, the family was ready to accept them with love.
While Yossi was the impetus of creating the program, he was never a participant. The after-school program was entirely a fulfillment of Malki’s promise and commitment to help other families experiencing similar challenges.
As Shalva was establishing itself in our neighborhood, Yossi was learning at an astounding pace. Now armed with the gift of communication, Yossi learned how to write Braille. With another way for him to express his feelings, Yossi further impressed his teachers and therapists, and most definitely myself and Malki, giving us the fuel to continue our work at Shalva as the great demand for our program began to present itself.
People came out of the woodwork, begging us to accept their children into our programs, which lead to the rental of an additional adjacent apartment to expand our capacity, and eventually, the building of our own center in 1998. Meanwhile we were expanding our offerings to include a variety of new, innovative programs including: Overnight Respite where Shalva children would spend one night a week at Shalva, giving their parents a full 36 hours of reprieve, Me and My Mommy, where new mothers of infants with disabilities can access a full range of therapies, and an Inclusive Daycare where children with disabilities interact alongside typical children. Malki’s vision was comprehensive and she was driven to create programs to address the full spectrum of family life with a child with disabilities.
In 2005 the Israeli government turned to us to accept numerous more children to our programs. This was a huge vote of confidence, but we simply could not accommodate the request in our current space. The government request came hand in hand with an offer of land to build a larger facility to accommodate the demand.
It was an outrageous offer to build on seven acres in the heart of Jerusalem. We had no idea how we would be able to pull off the tremendous feat of raising the funds and completing an extensive construction project, but we knew we had to accept the offer, as an opportunity like this would never present itself again. And miraculously, we raised over $70,000,000 over the next 10 years and built a 220,000 square foot center on 12 floors with some of the most beautiful facilities one can imagine.
The Shalva National Center today. Courtesy of Kalman Samuels.
The new center has enabled Shalva to expand its scope of services, accept hundreds of more program participants, and introduce innovative therapy solutions to Israel for the first time. Shalva continues to be a beacon for families of individuals with disabilities as well as a resource for the international disability community on best practices for therapy and inclusion programs.
As Shalva has grown tremendously over the past 33 years, so has Yossi. Though his disability adds considerable challenges, Yossi has embraced life fully and engages in society in his own unique way. Yossi’s heightened sense of smell and taste has allowed him to qualify as a sommelier leading to the creation of his own line of wine and his developed skills allow him to work as a valuable employee at Route 6 highway’s offices.
Yossi’s heightened sense of smell and taste allowed him to qualify as a sommelier. Courtesy of Kalman Samuels.
In spite of Yossi’s limitations that include his inability to walk and being wheel chair bound for the past 23 years, Yossi loves life and continues to realize his dreams. He travels extensively and has met VIPs such as President Bush and UK Prime Minister Gordon Brown, and has even managed to ride an elephant in Thailand. Yossi remains interested in current affairs and stays up to date on politics and technology advancements, taking real interest in the world around him, despite not being able to interact with the world in the way the rest of us do. He has a quality of life we never could have imagined for him during those dark years of his childhood.
Yossi and Kalman Samuels speaking with then-President George W. Bush and First Lady Laura Bush at the White House.
The story of Shalva, and Yossi’s story go hand in hand. It has always been very important to Yossi that I tell his story— he wasn’t born this way and his disabilities were caused by injury. He was the drive and the inspiration behind my writing a memoir entitled “Dreams Never Dreamed.” I’m humbled by the magnitude of what has been accomplished at Shalva and that so much goodness has emerged from a dire situation that offered little hope. And I’m eternally grateful to the many dedicated partners who continue to make it a vibrant reality.
