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Parenting a Disabled Child: Help and Hope
| Article
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16819 |
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Section : |
LIFE
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| Issue
Date : |
9 / 1989 |
2,225 Words |
| Author
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Robert H. Ruffner and Rita Robinson
Robert H. Ruffner is a writer living in Alexandria, Virginia.
He is internationally recognized as an expert on disability
issues. Rita Robinson is a free-lance writer residing in
Lytle Creek, California. |
The doctor averts his eyes. The nurse fusses with the bedcovers. "Where is my baby?" asked the anxious new mother from her hospital bed. "Why can't I hold my baby like the other mothers?" The doctor cleared his throat and told her that her baby is disabled. Birth disabilities run the gamut from Down's syndrome to cerebral palsy to spina bifida, blindness, deafness, and on to a bewildering array of problems most parents have never heard of.
"The doctor had the sense to tell me when my husband was with me," says one mother, recalling the moment she learned her baby was disabled. "When a doctor tells new parents that they a handicapped child, they should be told together so they can support each other."
Bearing a disabled child usually produces feelings of betrayal, horror, and failure; for many, it is an intolerable burden. Unfamiliarity with disability adds to parental stress.
Act Quickly!
Parents of a handicapped child quickly find that there are few guides to help them adjust to their new situation, and the medical community often provides confusing or contradictory instructions. Starting at the local public library, parents need to learn as much as possible about their child's disability. Time is of the essence, as parents of older handicapped children and adults can testify. Many believe that the most troublesome aspects of their child's disability could have been avoided if they had had access to the right information and had acted on it immediately.
Also, because rearing a disabled child can be very expensive, when parents come home from the hospital, with or without the baby, they must locate all sources of information about the disability and of support available to the disabled. This also applies to parents whose child becomes disabled at a later age, through accident or illness.
The U.S. system of dealing with disabilities is a crazy quilt of private, state, and federal government programs. The child is ensured certain rights under federal legislation, including the Education of Handicapped Children Act (1975) and the Rehabilitation Act of 1973 (as amended). Early intervention programs are offered by many private and state organizations, so parents' first task is to locate everything available in the state in which they live. Programs vary widely from state to state; even from community to community within a
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