This guide is intended to help both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care. Collaborating as equals may be new for family members and providers. This guide includes information and guidance on how to get the most out of this potentially powerful partnership. (Author abstract)
Every parent dreams of having a happy, healthy child. What happens when these dreams are shattered by a physical or cognitive disability? A Different Kind of Perfect offers comfort, consolation, and wisdom from parents who have been there—and are finding their way through. The writings collected here are grouped into chapters reflecting the progressive stages of many parents' emotional journeys, starting with grief, denial, and anger and moving towards acceptance, empowerment, laughter, and even joy. Each chapter opens with an introduction by Neil Nicoll, a child and family psychologist who…
This chapter summarizes the main findings from research employing narrative methodologies on fathers of children with special needs. Analyses were conducted of two main data sets consisting of Latter-day Saint fathers of children with a variety of serious disabilities and chronic illnesses. One sample consisted of 16 fathers of young children with special needs and the other sample included 19 fathers with children of varying ages. Findings indicate the fathers felt a moral call to meet the needs of their children, they work hard to do so, and they bring strengths to this work. Many of the…
This book includes 21 personal testimonies written by British fathers of children with a disability who reflect on their own experience and offer advice to other fathers and families on the challenges of raising a child with a disability. The fathers featured represent abroad spectrum of experience, including fathers from different cultures, single fathers, and married adoptive fathers. They address the reactions of family and friends to a child with a disability, how to deal with the organizations and professionals that support families with a child with a disability, and the difficulty of…
Intended for parents of children with disabilities, this book includes 40 essays written by successful adult role models who share what it is like to grow up with a disability. Authors with different kinds of disabilities and/or special health care needs were asked to write about something that they wish their own parents had read or been told while they were growing up. The essays are divided into five sections that address: appreciation for parents who provided unconditional love and a sense of belonging in a family; how parents addressed the unique needs of their children with disabilities…
