| Abstract: | Reviews the book, My journey with Jake: A memoir of parenting and disability by Miriam Edelson (see record 2000-16338-000). 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. 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. 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. 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. This book provides valuable insights relevant to clinicians, policy makers, educators, researchers, and families with a particular interest in developmental disability. In addition, it includes a useful list of resources for parents, as well as some suggestions for parents and professionals. (PsycINFO Database Record (c) 2010 APA, all rights reserved) |
