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  • Title: Impact of a disabled child on the family.
    Author: Black M.
    Journal: IPPF Med Bull; 1981 Oct; 15(5):1-2. PubMed ID: 12337654.
    Abstract:
    When it is learned at birth that the child is in some way abnormal the effect on the parents can be devastating. Their initial reaction may be "numbness." This is followed by a period of questioning which may go on for many years, as to why this should have happened to them. Within different cultures the interpretation and reactions to the birth of a disabled child vary greatly. It can be viewed as a punishment from a god for some wrongdoing in a previous or present life. Whether or not the various interpretations are correct, the parents tend to blame themselves or each other. The situation is not eased by the fact that at this time the average parent in many parts of the world has high expectations of the ability of the medical and allied professionals to find the cause of the disability. As this is not possible in many cases, the parents feel angry, frustrated, or helpless. The existence of a handicapping condition discovered at or soon after the baby's birth needs to be explained to the parents thoughtfully and carefully. Both parents should be privately told together and as soon as possible. It is helpful, in a hospital setting, to have the meeting with senior medical and nursing staff and a social worker. If the disability is discovered at birth, frequent contact should be encouraged between the mother, father and child, for this may help to reduce the possibility of rejection of the child at a later date. When parents are informed of the disability, they should also be advised of any available supportive services. A "key worker" should be selected by the parents from among the professionals involved in order to avoid giving conflicting advice and information. In regard to future pregnancies, the parents may not know what the risk may be of producing another disabled child. Genetic counseling, if available, should include the brothers and sisters. If parents decide against more children, they need to choose a contraceptive method. When temporary methods are unacceptable, sterilization can be considered. The burdens of the parents of severely handicapped children are great, and more and more parents who have children with a particular disability are establishing their own "self-help" groups and learning from each other how to cope with problems.
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