System support for families of children with disabilities with emphasis on families of deaf children

Abstract

Birth of a child represents a change in family structure, a change that requires an adoption of new roles, as it brings new incentives to family dynamics. Birth of a child with disabilities, in fact a comprehension that a child has developmental disabilities, represents a stressor of different quality, placing a heavy burden on the family for a long period of time. As in other, different stress situations, pain and suffering, brought by the knowledge of child’s disability, could present a trigger for the occurrence of different reactions and feelings on different levels. Shock, non-recognition of a disability, ambivalence, resentment, discouragement, chronic tension, feelings of guilt, feelings of isolation, defeat, depression, feeling of helplessness, blaming others, loss of self-esteem are just some of the possible reactions. In addition, parents are faced with an ongoing insecurity and greater anxiety in raising their child. Parents are being rewarded less by their children’s achievements than parents of healthy children, there is a decline in their expectations. Also, fear of labelling the family as “different” may appear, as well as problems with the acceptance of moving a child to a special category. Finally, lack of criteria for predicting the future of the child presents a particular source of suffering. Establishing good cooperation with the family, in order to establish a system of family support, requires many individual contacts, knowledge of its functioning, a lot of time and patience, as well as linking with experts in various fields. Early intervention is an integral part of the system of support for families of children with disabilities. We started from the fact that in helping children it is important to work not only with the child, but also with parents and that every form of work with parents is good, if it contributes to the child’s general development. Support for families of deaf and hard of hearing children begins soon after the baby is diagnosed with hearing loss. Early intervention, carried out through the participation of children and parents in the rehabilitation treatments, should help parents understand what the hearing loss brings, as well as help them gain confidence in parenting. It should also help parents realize the strengths and needs of their child and to enable a child to acquire necessary language skills that are essential in order for a child to become an equal member of the society.