Lissencephaly

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. In Edelson's case, doctors were asked to employ no heroic measures to save her son's life. However, as Edelson and many other parents report, their wishes are often neither acknowledged nor followed. Edelson writes, "any attitude other than gratitude is frowned upon. A mother's emotion, particularly anger is often dismissed as hysteria" (p. 63).

In light of her experiences, Edelson poses challenging questions that need to be addressed. For example, how are we educating medical students, nurses, psychologists, and rehabilitation therapists? Are they being given the skills needed to involve parents in their child's care in a respectful and meaningful way? Edelson's description of being given the tragic news about her son's condition speaks volumes regarding the training of doctors. She describes how a physician they had never seen before and to whom they had not been introduced gave them the news about their son's disorder in a crowded and noisy hallway with a group of medical students looking on. He was curt and seemingly impatient, speaking to his entourage of students as much as to Miriam and her husband. He gave the news and moved on to their next case, saying that their own neurologist would discuss the case with them further. It was left to the parents, however, to find the neurologist and to book an appointment. In the meantime, they were left standing in the hall, at first stunned, then angry. Edelman asks, "What kind of clown tells parents that their infant will die, in a situation about as dignified as an amusement fair midway?" (p. 42).

Edelman eloquently delineates the parents' dilemma. With her strong sense of justice, she wanted to do something to reduce the risk that other parents will receive devastating news in such an unprofessional way but she was concerned that it might affect her child's care. Eventually, she met with the patient advocate and lodged a formal written complaint. She never received a response.

Other important issues addressed include the ethics of care, particularly with regard to medically fragile children: the need for a variety of options and flexibility to accommodate the changing needs of families over time and the need for better communication between families and representatives of agencies and government departments responsible for children with special needs. Through her actions, Edelman provides a model of advocacy for parents. This is a challenging road even for an experienced mediator, and, as Edelman points out, there is a clear need for ongoing support throughout this unrelentingly arduous process.

After the birth of her second child, Edelson took on a new position as communications director for the Canadian Auto Workers' Union. She describes the disparity between her two worlds. While both required organization and endurance, they were different with respect to aggressiveness and receptivity. Work provided a diversion but Edelson constantly felt drawn to her son who lived two hours away. Travel, writing, media relations, and motherhood took their toll on her as well as on her husband and daughter. Edelson learned that she needed to take care of herself, as well as others. She tried to take time for herself, talked to a counselor when needed, and used massage and exercise as antidotes. She describes parents raising a child with special needs as pioneers without a map who cannot be expected to cope alone. She underscores the need for high-- quality residential care and respite for families who have their children at home, and discusses the ethics of care. Edelson describes the onerous task of managing the complicated logistics of her life. As the years pass, she must prepare herself and her family for Jake's probable early death, the reality of which confronted her with every crisis along the way. She strived to maintain a normal semblance of life, attempting to include Jake in family celebrations despite his being medically fragile and living far away.

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. I plan to recommend My Journey with Jake to undergraduates in my course on developmental disabilities, to graduate students conducting research with families, to interns and practicum students working with individuals with disabilities and their families, and to colleagues working in the field.

References

Minnes, P. (1998). Mental retardation: The impact upon the family. In J.A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 693-712). Cambridge, MA: Cambridge University Press..

Minnes, P., Nachshen,J., & Woodford, L. (1999). The role of families. In I. Brown & M. Percy (Eds.), Developmental disabilities in Ontario (pp. 157-172). Toronto, oN: Front Porch Press.

Turnbull, A.P., Patterson, J.M., Behr, S.K, Murphy, D.L., Marquis, J.G., & Blue-Banning, MJ. (1993). Cognitive coping, families & disability. Baltimore, MD: Paul H. Brookes.

Patricia Minnes is an Associate Professor and Director of the Clinical Program in Psychology at Queen's University in Kingston, Ontario. The primary focus of her research and clinical practice is coping in families of individuals with disabilities.

Miriam Edelson is a trade union and disability rights activist who advocates for children with special needs and their parents. Her story has been featured in Canadian newspapers and magazines, on Canadian television and radio.

Copyright Canadian Psychological Association Nov 2001
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