<p>Prader-Willi Syndrome: Growing Older challenges readers to think about quality of life and the aging process. Importantly, it documents the stories of Canadians with Prader-Willi syndrome who are over the age of 40.People with developmental disabilities are human beings just like you. We have feelings, dreams and personal thoughts. We have a heart, soul, mind and spirit and we need you to understand us. Understanding and caring are two of the most important things that you can do for us. I want to have the CHOICE to decide what I want in my life. I want to have an apartment with my own support workers to help me keep myself and my apartment clean, to monitor my food intake and keep me safe. I know that I need someone to keep the cupboards locked and I need someone to keep me active to control my weight. I want to have some fun in my life. I have the right to have the same CHOICES in life that you do. Without choices my right to freedom is being denied. (John, age 40) I live independently. I am a 40-year-old adult. I am living on a farm. I finally feel that I have freedom and less controls and more choices - I love my life. (Angela, age 40)Living independently with staff support is my greatest accomplishment. This was worth fighting for. (LeeAnne, age 40)</p>

Prader-Willi Syndrome: Growing Older

Health, Fitness & Dieting

James PhD, Terrance N.

Aging

Poplar Publishing

Prader-Willi Syndrome: Quality of Life takes a comprehensive look at PWS throughout the lifespan. It considers quality of life from the perspectives of those with PWS, their parents, care-givers, and support workers. It is based on a 22 year follow up with 51 families, interview with 25 younger families, review of 40 additional case files, examination of Canadian media reports, and a search of the international literature. The author writes from a psycho-socio-educational perspective, examining the whole person in the context of home, school and community settings, and within commonly understood life domains. Hope is found in the current best practices such as individualized programming, supported independence, and community living. Personal and family stories illustrate the range and variability within the syndrome and the uniqueness of individual circumstances. Readers will be encouraged by the improvements in supports and services in recent years. They will be reassured by the personal accounts and photographs illustrating daily life with PWS. They will read of heartaches and successes, and find hope in new perspectives and possibilities

Prader-Willi Syndrome: Quality of Life

Medical Books

Psychology

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Books by James PhD, Terrance N.