Includes bibliographical references (pages 233-240) and index.
Contents:
Defining extreme caregiving -- Hard labor -- Narrative and the phases of care -- Attentiveness/responsibility: the invisible work of care -- Competence -- Responsiveness -- Holding the future.
Summary:
"Parents who care for children with special needs, particularly those whose children have multiple disabilities or intellectual delays, are pioneers in home health care and caregiving, yet their experience and expertise are rarely recognized. This book collects parent narratives, personal experience, and academic research to portray the lives of parent caregivers, looking at both the trials and the triumphs inherent in raising a child with special needs. Parents raising children with special needs often must devote all of their resources, both tangible and spiritual, to providing care long into their offspring's lives. Their experience exceeds the usual parameters of parenting. This book examines all of the facets of their parenting role, the care they provide, challenges they face, and questions many assumptions. It presents parents as neither emotional wrecks nor overburdened saints, but as moral individuals struggling to find their own way through relatively unexplored territory. ..."-- Provided by publisher.
This resource is supported by the Institute of Museum and Library Services under the provisions of the Library Services and Technology Act as administered by State Library of Iowa.