Review of My journey with Jake: A memoir of parenting and disability.

Abstract

MIRIAM EDELSON My Journey with Jake: A Memoir of Parenting and Disability Toronto, ON: Between the Lines, 2000, 207 pages (ISBN 1-896357-35-0, C$24.95, Softcover) Reviewed by PATRICIA MINNES The experiences of parents of children with disabilities have been widely documented (for reviews see Minnes, 1998; Minnes, Nachshen, & Woodford, 1999). Quantitative studies have highlighted a variety of stressors and the correlates that serve to mediate or moderate such stress. These include resources related to the marriage and family environment, social support, education, information, and socioeconomic status. In recent years, qualitative studies have augmented previous research, providing snapshots of parents' experiences raising a child with a disability (see Turnbull, Patterson, Behr, Murphy, Marquis, & Blue-Banning, 1993). While the information in such studies is valuable, Miriam Edelson's memoir goes beyond these to provide a long view that documents the continuing challenges and lessons learned over a period of nine years with her son Jake. Jake was born with lissencephaly, a rare genetic disorder (1 in 300,000 births) in which the brain stops developing between 12 and 14 weeks after conception. The surface of the brain is often smooth and in Jake's case an mRI indicated the absence of a corpus callosum. Seizures, low muscle tone, sucking and swallowing problems are common. Such children are given a very guarded prognosis, with feeding problems and aspiration pneumonia often leading to death. In Jake's case, supplementary tube feedings were necessary. He continued to have frequent fevers and respiratory problems that required suctioning of mucous to clear his airways. Edelson traces her journey from Jake's birth through traumatic days at Toronto's Sick Children's Hospital and then at home, and describes her struggles with decisions about heroic measures and her battles to find sympathetic doctors. The issue of accommodation for Jake emerged in the first year. Edelson highlights the many challenges faced by parents in times when deinstitutionalization and homecare are the approaches of choice, and in many cases the only choice. Jake's medically fragile condition posed additional problems and it was only after much searching that a group home was found in which the model of palliative care fit Jake's medical needs. The process took its toll as Jake's parents struggled with special needs agreements and the bureaucracy of the Children's Aid Society, which handles the funding for such accommodation. An additional price she was forced to pay was the twohour drive to the home from Toronto where Edelson and her husband lived. In addition to being Jake's mother, Edelson was and is an activist who has worked for the Public Service Alliance of Canada (PSAC) and the Ontario Public Service Employees Union (OPSEU). She was also the Executive Director of the CBC National Radio Producers Association representing journalists across the country. The juxtaposition of Edelson's life as mother and her life as activist provides interesting insights. For example, the skills Edelson developed while negotiating contracts and advocating for women proved to be very helpful in dealing with government bureaucracy and inflexible professionals involved in lake's care. In addition to highlighting her own experiences as a parent, Edelson provides figures regarding the numbers of children with disabilities in Ontario, and information about service delivery and policy issues. She describes the battles that parents continue to fight to maintain residential facilities for children with disabilities, using the move to close Thistletown Regional Centre in Toronto as an example. Edelson's experiences with health professionals provide important information for educators and clinicians about the ways in which families can be either thwarted or empowered when dealing with extremely difficult decisions about a child's care. …