Parenting children with disabilities

Johnson, Barbara Schoen
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The study was a qualitative approach to the parenting of children with physical disabilities. Participants in the study were mothers of preschool and elementary school-age children with a physical disability of mild to moderate degree of impairment and who were mainstreamed into normal classrooms and usual childhood activities such as sports, Scouts, and neighborhood play.

The participants in the study were asked, by means of a nonscheduled standardized telephone interview, what they were doing well and "not well" in parenting their disabled child, what difficult experiences they had encountered, how they were preparing their child for the questions or teasing of other children, what they were doing to encourage their child's social skills, how they were handling discipline and nurturing issues, and how they were teaching their child new skills. In addition, they were asked to give their overall perception of themselves as parents and to comment on anything they wished to add regarding the rearing of a child with a disability which the interviewer had not mentioned.

The parents' responses were taped, transcribed, and then analyzed according to grounded theory methodology. The data concepts collapsed into the categories of goals for the child, communicating to the child, interacting with the child, seeking help for the child and themselves, dealing with their own feelings as parents, parental regrets, and advice for other parents. From these categories emerged the core variable, parental straddling, which occurred on three levels: (a) parents were living in the past, that is, the preoccupation with the child's birth, diagnosis, and developmental milestones, and dealing with the day-to-day present, the additional challenges of parenting a child with disability; (b) parents were dealing simultaneously with the child's and their own feelings and issues; and (c) parents were striving for an ideal position of viewing and treating the child and helping him or her see himself or herself as "normal" when the child was not "normal" as evidenced by his or her involvement with therapies, doctors, and special education. The core variable, parental straddling, was diagrammed and discussed as a component of parents' coping with rearing a child with a disability.

Child rearing, Children with disabilities, Parental straddling, Parenting