HOME CARE FOR THE CHRONICALLY ILL OR DISABLED CHILD by Monica Loose Jones

HOME CARE FOR THE CHRONICALLY ILL OR DISABLED CHILD

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KIRKUS REVIEW

A frank, direct, wide-ranging guide that provides concrete help in dealing with the myriad issues that face families of chronically ill and disabled children. Jones became a practical expert through caring for her own daughter: ""Although she did become progressively paralyzed""--by a rare neuromuscular disorder--""to the point where she could only open and shut her eyes, talk softly, and move two fingers, Bronwyn lived happily to the age of nine and a half."" From sound interviews with health professionals, she is able to provide the medical background. The information is clearly and sensibly arranged into meeting the child's medical needs, daily physical needs, and educational-and-social needs; and meeting the needs of the whole family (right down to mapping out a realistic house-cleaning schedule). An extensive final section discusses ""When a Child is Dying."" Though Jones is matter-of-fact to the point of brusqueness, this may be what it takes for parents to feel that they can cope with a prosthesis, or respiratory therapy, or choking emergencies--indeed, that they are capable of having their child at home (""the stump size of new amputees is likely to decrease. . .""). Jones is not afraid of the thorniest issues--e.g., sex education for disabled youngsters, physical care during menstruation. She is firm and reassuring about a child's death: ""The good things in life will live on. . . Certain things are as they are, and that includes the fact that your child is dead. How you continue your life, how you honor your child's memory, is up to you."" Distinct from earlier home-care guides in focusing on children--and helpful in conquering daily hurdles, as well as answering persistent questions.

Pub Date: April 10th, 1985
Publisher: Harper & Row