Tuesday, January 6, 2009

A Different Kind of Perfect or Families Living with Chronic Illness and Disability

A Different Kind of Perfect: The Story of Parents' Choices and a Special Child's Blessings

Author: George Michael Lan

A Different Kind of Perfect is a story about parents choosing a child with Down syndrome and the implications of that choice. It's a story about faith and blessings in an imperfect world that craves and idealizes perfection. It's also a story about finding God's perfection through love. Written with an honest voice, George Michael Lane draws the reader into his family's personal story. The struggle with whether or not to terminate the pregnancy is honest and will hit a nerve with a contemporary audience.

Table of Contents:
Acknowledgements     vii
Life, Love, and Discernment
"God's little downs"     15
Keep it or kill it?     21
Norma McCowey, aka Jane Roe     27
The pastor's visit     35
Tough facts     43
Meeting with the abortionist     53
Giving God permission     59
Love in quiet surprises     65
Saint Joseph's-in-the-hills     69
In the dark woods     75
Be still and know that I am God     83
A winner never quits; a quitter never wins     89
Coming to a dead end     95
Where are you asking us to go with you, Lord?     101
Game six-ghosts of past failures     105
"Those feelings and hunches that are God"     109
The ball that got away     115
Tomorrow's child     117
Welcome to Holland
Choosing love     139
Crossing home     143
"Miss Amy's" heart surgery     147
Life goes on     155
"A gift that keeps on giving"     169
"Children are not things to be molded but people to be unfolded"     175
It's the journey, not the destination     189
Naked to the world     193
A mother's daughter     199
Peter, Paul, and Mary     211
God's Perfection
A different kind of perfect     227
A perfect day     235
Good giving and perfect gifts     239
Epilogue     245
Post epilogue     247
Letter to amy's teacher     251
Special needs trust     259
Bibliography     261

Interesting textbook: Management Information Systems or Dragons with Clay Feet

Families Living with Chronic Illness and Disability: Interventions, Challenges, and Opportunities

Author: Paul W Power

To help families manage an intense medical-related event, Power and Dell Orto propose that a family-oriented life and living perspective should be combined with a family intervention philosophy. Stressing acknowledgment of the adverse effects of the illness and an affirmation approach to family struggle and opportunities, the authors explore issues relevant to treatment, family adaptation, quality of life, and family survival. A unique feature of the text includes the organization of the chapters around thought-provoking personal statements followed by questions/experiential tasks designed to stimulate thought and discussion.

This book is must reading for health and allied health professionals including physicians, nurses, rehabilitation counselors, social workers, psychologists, and family advocates and will serve as a useful textbook for professionals-in-training.

Doody Review Services

Reviewer: Amy D. Shaver, MS, RN (SUNY Institute of Technology at Utica-Rome)
Description: This book provides a thorough discussion of family dynamics that affect the rehabilitation process of a person who has become disabled. The authors work with a basic philosophy throughout the book of the family as a unit. A variety of issues that are commonly faced by patients in rehabilitation and their families are reviewed.
Purpose: The purpose is to provide healthcare professionals with a functional method for assisting families as they adapt to an acute or chronic rehabilitation process of a member who is disabled. The authors' intent is to have the family become a helping resource in this process. The authors recognize the research and knowledge already explored related to illness and disability but also recognize the further need to promote the family unit as a primary force in recovery and adaptation. In meeting their goals, the authors present a variety of situations that may lead to a disability. A focus on how healthcare professionals can work with families during the rehabilitation period is provided with a practice approach from a theoretical perspective.
Audience: The book is written for "health, allied health, and other professionals". Included in this group are physicians, nurses, rehabilitation counselors, social workers, psychologists, family advocates, physical and occupational therapists, clergy, peer counselors, and speech pathologists as well as those in training, according to the authors. The authors are credible authorities. Paul Power is an emeritus professor of counseling who has written other books that focus on this topic. Arthur Dell Orto is a professor and program director of rehabilitation counseling in the Department of Rehabilitation Sciences at Boston University.
Features: The book begins with a discussion on family dynamics related to illness and disability from the perspective of stages of adjustment that the whole family will experience. Included always is the perspective of the person who has the disability. The importance of a thorough family assessment initially is emphasized for successful interventions during the rehabilitation process. The relationship among members of the family as well as the relationship between the healthcare professionals and the family is presented as key to achieving management and adjustment goals. The book presents aspects of disability from a birth defect to an accident in a child or adult as well as disabilities that occur from chronic disease processes. The last section of the book looks at the selected family issues related to alcohol use, challenges of care giving, and dealing with loss and grief. An effort is made to assist healthcare provider in helping the family cope with the realities of the disability, promoting rehabilitation and adjustment while accepting limitations and even the possibility of death. Each chapter has a case study related to the chapter's focus, followed by reflection questions. This is an excellent way for healthcare providers to reflect on their own values related to disability and family. These case studies bring the theory to life. The third section of the book is "Selected Family Issues." Although the issues of alcohol use, respite care, and loss and grief are important, it seems that their inclusion to the exclusion of other issues gives them a greater importance. This may well be the intent of the authors however it leaves the reader looking for more at the end of the book.
Assessment: The authors have successfully presented the many issues related to the rehabilitation process, from addressing a variety of age ranges to how families may react to each of these different situations. The language is clear and the flow of the book is smooth and sensible for use in practice. Family issues and rehabilitation issues are presented as parts of larger textbooks, such as Allender and Spradley, Community Health Nursing, Concepts and Practice, 5th ed. (Lippincott Williams & Wilkins, 2001) and Black and Hawks, Medical-Surgical Nursing: Clinical Management for Positive Outcomes, 7th ed. (Elsevier, 2005). However, these do not provide the comprehensive look at the importance of family in the rehabilitation process that is found in this book. This book also provides healthcare professionals or students with theoretical and practical methods related to the topic. It would be well worth reading for anyone in healthcare working with patients with disabilities and their families.


4 Stars! from Doody

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