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Broken Bones, not Broken Spirit: Children with Special Needs in Tashkent
Numerous times, Ramil, age 13, has gone to sleep and woken up with a broken bone. Enduring his entire childhood with osteogenesis imperfecta, a congenital brittle-bone disease, this bright teen has become accustomed to the discomfort; he understands the seriousness and vulnerability of his condition. But more difficult for him and his family to accept were the limitations that the disorder used to put on Ramil's academic and social endeavors, according to his mother, Shara. "We had a hard time believing that our son would have a promising future, which made it even harder to convince him that he would," she explains.
Ramil and his family are now beneficiaries of the Program for Children with Special Needs – one of JDC's Children's Programs run through the JCC in Tashkent, Uzbekistan. Catering to youngsters with unique medical, psychological, or other needs, the program currently provides two levels of services to twenty children with special needs and their families: 1) home education for children who cannot attend regular schools because of illness or other circumstances and 2) customized activities for each child's family. Oksana, JDC Coordinator of Children's Programs in Tashkent, highlights the importance of making time to meet and do activities with the child and the parents separately. "Each individual requires a different type of support," she explains. "And it is crucial for the parents to be involved on their own level and to see how their children are changing and improving as a result." Through the program, Ramil receives dedicated home schooling two or three times a week in all standard disciplines, including mathematics, science, and language. Prior to JDC's intervention he was being tutored by government teachers "who were poorly paid and would work with Michael for only fifteen minutes," explains Shara. "Now the teachers are excellent, he is taking lots of notes and writing a lot," she says, opening one of his notebooks. Shara is concerned, however, that her son is at a disadvantage because he does not speak English, while his peers are studying it in public school. But Ramil, a sweet and well-mannered technical whiz, is optimistic; he is trying to teach himself English using the computer. "We just worry that he is too young to be so serious and smart," says his mom. "He has always understood everything. Instead, he should have been out playing with other young people." Today, Ramil is extremely social and has made many friends through the program. While his condition used to confine him to his home, he now makes regular visits to the JCC. In addition to special needs activities, such as art therapy and psychological consultations, Ramil and all other participants and their families are invited to celebrate festivities and holidays at the JCC, where they interact with the entire community. "We are very grateful to JDC because now we have an opportunity to go out, participate in camps, and do other activities," says Shara. "Before, we didn't go out together as a whole family. We have become closer to each other and with other families who have similar problems; this helps us to share and feel less alone." But Ramil's mother insists that the gift of this program has been even more profound. "We have grown to understand, as parents, that we can give our child something, make him believe in tomorrow," she says. Ramil now hopes that he will go to Israel with his family and that doctors there will help his condition. "Before, these children did not believe that they had a future; now they see that they absolutely do." |
