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New York City

Special Education Book Review
Dealing with Chronic Illness
By Merri Rosenberg

Few experiences can be as daunting for a parent as raising a child with a chronic illness. When that illness is hemophilia, the challenge quotient gets ramped up considerably. The specter of a child having potentially life-threatening bleeds, figuring out how to allow that child to enjoy childhood’s ordinary moments and milestones, and confronting one’s own anxieties is potentially a minefield fraught with scary missteps.

Fortunately for the relatively few parents who have children with hemophilia, a blood clotting genetic disorder that affects about 17,000 people in the United States, Laureen A. Kelley’s informative and useful book should help them navigate successfully through the process.

As the mother of a hemophiliac son, as well as two younger daughters, Kelley manages to be both reassuring and realistic. She doesn’t shirk from describing, sometimes in painstaking detail, the medical procedures that hemophiliacs endure or how to manage complications that may occur—but she does so in a brisk, chatty tone that conveys the unflagging message that parents don’t have to be afraid, and that they can raise a happy and well adjusted child. There’s a particularly engaging photo gallery of children with hemophilia, doing everything from karate and baseball to swimming and scouting, as a visual message that hemophilia doesn’t have to prevent a child from living as normal a life as possible.

As Kelley says, “Your child can have solid, healthy self-esteem despite hemophilia—solid enough to handle life’s joys and disappointments.” While Kelley never shortchanges the importance of managing the illness through preventive measures (like removing coffee tables with sharp edges, putting padding around the family fireplace, keeping sharp silverware at the back of the dishwasher, having a child wear a protective helmet when he’s learning to walk, making a child wear a MedicAlert bracelet ) she is also emphatic about being confident that a child can participate in sports, summer camp and other activities.

What Kelley does particularly well is present her information in a cogent and easily digested form that skillfully combines intimate anecdotes from other parents of hemophiliacs with scientific data and end-of-chapter summaries for quick reference. With its ample appendices listing everything from books and magazines, targeted towards parents and children; web sites; advocacy organizations; hot lines, and even sources of possible college scholarships, the book’s self-help features are clearly spelled out.

Kelley is also quite resolute about the need for parents to educate themselves about the disease and its treatments so that, in turn, they can be effective advocates for their child , whether dealing with emergency room personnel, school nurses, or even other family members and the parents of their child’s friends.

Especially useful is the chapter on schools, which provides very specific strategies on how a parent can reassure classroom teachers and other school personnel about the needs of a hemophiliac child. Kelley cautions parents to be alert to any signs that a teacher might be over-protective of a hemophiliac student, or in some way singling out that child in a way that might be harmful to his interactions with peers.

Kelley celebrates the role of the school nurse in helping a child with hemophilia thrive in school, and recommends that parents become respectful partners with the school nurse. She also recommends that parents do their part by informing school personnel whenever a child has to be absent for an extended period of time because of the illness, and be sure that arrangements are made for tutoring in school work so that the child doesn’t fall too far behind his classmates.

This is a valuable resource for anyone who has a child with hemophilia, or whose professional lives bring them in contact with these children.#

Merri Rosenberg is a freelance writer and editor specializing in educational issues.


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