My name is Clara Berg; I have been married to Jake since 1978 and we have three adult children named Sheldon, Kenny, and Karen. I was born in Uruguay and during a vacation trip to New York I met Jake; we got married and decided to start a family. I needed to polish my English, so I went to school and then looked for a job in the hospital industry, which is what I used to do in my country of origin.
My life, hobbies, and career quickly changed after giving birth to Kenny very prematurely, only ten months after Sheldon was born. In 1980 when Kenny was born, the doctors did not give us any hopes about his survival, and after removing the respirator when he was eight weeks old, we were told, “If he makes it, he will be blind and hearing impaired, he will have some kind of brain damage, and he will not reach his second birthday.” Kenny left the hospital when he was eight months old and had finally reached the mark of five pounds after going through periods where we really did not know if he was going to make it or not. When Kenny came home, I was three months pregnant with Karen.
Kenny’s prognosis made me realize that until I moved to New York City, I had never seen young people with disabilities in public. Growing up in Uruguay, I thought that individuals with disabilities happened only in books or in the movies. I learned later that is a cultural way of living in South America, and when a family had a baby with a disability, they kept the child at home with a nanny and nobody knew of that child’s existence. Needless to say, Kenny proved the doctors’ predictions wrong, and in July he will celebrate his 35th birthday!
My skills of determination, perseverance, and leadership became evident when Kenny turned two and we knew he was going to make it! I can talk about determination because I did not want to follow the hidden phenomenon that happened in South America, and Kenny, along with his siblings, came with us everywhere. I acquired a new skill called perseverance. When he was a baby, I had to repeatedly call and prove my point to receive services or any other thing we needed for him. As for leadership, I had received training in Uruguay about how to manage hotel personnel, and years later I transferred some of that knowledge and applied it to deal with all the therapists, doctors, and specialists who kept on telling us what to do. After listening to all, I knew I was going to be the one to make the final decisions and be the leader in Kenny’s life.
Schooling for Kenny was a serious challenge since we did not have a program in New York that dealt with children who were deaf-blind, and after trying many different schools, Kenny was admitted as a residential student at Perkins School for the Blind in Boston, MA at the age of six.
At that time I started volunteering at the Jewish Guild for the Blind to learn more about blindness and to help parents whose children attended that program. That position in 1988 turned into a full-time job as a Family Specialist with the state deaf-blind project, where I met more families who had a child with deaf-blindness. A few months later a group of parents got together to create the New York Parent Network and I became their first President.
During Kenny’s stay at Perkins, I got to meet amazing professionals, and although we had our disagreements and our challenges, for me it was the most amazing learning experience. We had Kenny’s first Person-Centered Planning with the Perkins team when he was 11, and as a result his teachers discovered many different ways to deal with his behaviors and honor his preferences.
In 1993 I was invited to join a group of parents who were acting as advisors to the Helen Keller National Center. That group was called the “Dream Team,” and in 1994 we created the National Family Association for Deaf-Blind (NFADB), where I held many different positions and at the present time I’m the President.
That same year, Kenny came home to recover from mononucleosis and he stayed for good. Once again the Jewish Guild for the Blind was very helpful, and they included Kenny in one of their classrooms with an assistant who was skilled in deaf-blindness.
Working as a Family Specialist gave me many different learning opportunities, but some of the most remarkable ones were when Family Specialists from all over the country used to get together once a year sponsored by HKNC-TAC, NTAC, and eventually NCDB. The wealth of experience and knowledge shared among us was indescribable, and after the meetings we always came back home reenergized and with new skills. One way or another, all the Family Specialists were in a leading role in their state, and in those meetings we learned how to become more assertive and assume more responsibilities to be an example to other parents.
After graduating in 2001, Kenny had a fantastic transition from school to work since we were able to secure a job five days a week at the farm where he had been volunteering for four years.
In December 2011 Kenny moved to his own apartment, two blocks away from the farm where he works and 10 minutes away from our home. He has a wonderful couple living with him who have been trained on deaf-blindness, tactile sign language, and mobility. He still spends most of his weekends with us and participates in all family or community events, and it’s always a joy to see his smile when he learns he will be joining us on a trip.
My position as the Family Specialist for the New York Deaf-Blind Projects has remained the same for almost three decades, although I’ve worked under four different Project Directors. In 2008 when the New York Deaf-Blind Collaborative grant settled at Queens College, one of the Family Initiatives was to instruct parents on parent leadership skills. In partnership with NCDB, PTIs, and Advocacy Centers, we have been delivering the information in different ways according to the needs of the families and to accommodate a broader audience. We have offered trainings on weekends, webinars or weekly meetings in English and Spanish.
Since Kenny’s birth, when I thought I was the only parent in the world to go through a situation like this, to now, where I feel surrounded by the most amazing and caring lifelong friends in our deaf-blind community, I can only express my deepest gratitude to all the parents and professionals who came across my path. What I have learned on this challenging and rewarding road is that: