The stories of fathers caring for non-verbal children and how these experiences alter their understandings of care, masculinity, and living a full life. Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of “normal” when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of who we are and how we relate to others.
When a child has a health problem, parents want answers. But when a child has cerebral palsy, the answers don't come quickly. A diagnosis of this complex group of chronic conditions affecting movement and coordination is difficult to make and is typically delayed until the child is eighteen months old. Although the condition may be mild or severe, even general predictions about long-term prognosis seldom come before the child's second birthday. Written by a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children, this authoritative resource provides parents and families with vital information that can help them cope with uncertainty. Thoroughly updated and revised to incorporate the latest medical advances, the second edition is a comprehensive guide to cerebral palsy. The book is organized into three parts. In the first, the authors describe specific patterns of involvement (hemiplegia, diplegia, quadriplegia), explain the medical and psychosocial implications of these conditions, and tell parents how to be effective advocates for their child. In the second part, the authors provide a wealth of practical advice about caregiving from nutrition to mobility. Part three features an extensive alphabetically arranged encyclopedia that defines and describes medical terms and diagnoses, medical and surgical procedures, and orthopedic and other assistive devices. Also included are lists of resources and recommended reading.
Decades of research have demonstrated that the parent-child dyad and the environment of the familyâ€"which includes all primary caregiversâ€"are at the foundation of children's well- being and healthy development. From birth, children are learning and rely on parents and the other caregivers in their lives to protect and care for them. The impact of parents may never be greater than during the earliest years of life, when a child's brain is rapidly developing and when nearly all of her or his experiences are created and shaped by parents and the family environment. Parents help children build and refine their knowledge and skills, charting a trajectory for their health and well-being during childhood and beyond. The experience of parenting also impacts parents themselves. For instance, parenting can enrich and give focus to parents' lives; generate stress or calm; and create any number of emotions, including feelings of happiness, sadness, fulfillment, and anger. Parenting of young children today takes place in the context of significant ongoing developments. These include: a rapidly growing body of science on early childhood, increases in funding for programs and services for families, changing demographics of the U.S. population, and greater diversity of family structure. Additionally, parenting is increasingly being shaped by technology and increased access to information about parenting. Parenting Matters identifies parenting knowledge, attitudes, and practices associated with positive developmental outcomes in children ages 0-8; universal/preventive and targeted strategies used in a variety of settings that have been effective with parents of young children and that support the identified knowledge, attitudes, and practices; and barriers to and facilitators for parents' use of practices that lead to healthy child outcomes as well as their participation in effective programs and services. This report makes recommendations directed at an array of stakeholders, for promoting the wide-scale adoption of effective programs and services for parents and on areas that warrant further research to inform policy and practice. It is meant to serve as a roadmap for the future of parenting policy, research, and practice in the United States.
"Regardless of the age of the father, the child's challenge, or even the gender of the essayist, Dads of Disability strives to paint pictures of a variety of different men who have one thing in common--they deeply love a child who experiences a disability. These 41 essays and poems will help fathers and those in their circle of support learn from each other. The variety of perspectives will foster important discussions." --Back cover.
PARENTING NEVER ENDS. From the founders of the #1 site for parents of teens and young adults comes an essential guide for building strong relationships with your teens and preparing them to successfully launch into adulthood The high school and college years: an extended roller coaster of academics, friends, first loves, first break-ups, driver’s ed, jobs, and everything in between. Kids are constantly changing and how we parent them must change, too. But how do we stay close as a family as our lives move apart? Enter the co-founders of Grown and Flown, Lisa Heffernan and Mary Dell Harrington. In the midst of guiding their own kids through this transition, they launched what has become the largest website and online community for parents of fifteen to twenty-five year olds. Now they’ve compiled new takeaways and fresh insights from all that they’ve learned into this handy, must-have guide. Grown and Flown is a one-stop resource for parenting teenagers, leading up to—and through—high school and those first years of independence. It covers everything from the monumental (how to let your kids go) to the mundane (how to shop for a dorm room). Organized by topic—such as academics, anxiety and mental health, college life—it features a combination of stories, advice from professionals, and practical sidebars. Consider this your parenting lifeline: an easy-to-use manual that offers support and perspective. Grown and Flown is required reading for anyone looking to raise an adult with whom you have an enduring, profound connection.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
Progressive, untreatable nerve and muscle diseases transformed the author's life from having been a college athlete to needing a wheelchair and special equipment for day-to-day activities. While dealing with his own conditions, he was faced with the unique challenge of being the sole caregiver for his wife who suffers from Alzheimer's disease. He has written this experience-based book to help people with life-altering medical conditions and those dealing with challenging caregiving responsibilities. Comprehensive in scope, it covers topics including grief, finances, safety and end-of-life planning. This is a resource book containing many references aimed at helping the reader overcome their challenges, maintain their independence and have happy, fulfilling lives.
Discover how to build your village and raise your Special Needs child in a supportive, loving community. With an authentic and conversational tone, It Takes A Village is an inspiring book that seeks to illuminate the challenges that parents of children with ADHD or Autism face, providing a wealth of practical strategies and advice for helping you navigate your role as a caregiver to neurodivergent kids. Designed to help readers appreciate the value of a support system, this heartfelt book empowers parents of all backgrounds with the tools they need to surround themselves with positive, encouraging, and supportive people - from friends and family to professionals and non-profit groups. Plus, with a collection of exercises and prompts, you can keep track of your parenting journey and track your progress over time. Here's just a little of what you'll discover inside: Essential Self-Care Tips To Help You Build a Strong Foundation For Your Family Why Building a Support System Is a Powerful Way To Help You Manage The Struggles of Parenthood How To Make Connections Inside and Outside The Special Needs Community Why Professionals and Non-Profit Groups Can Be an Invaluable Resource For Your Child Practical Worksheets So You Can Track Your Progress And So Much More! Perfect for any parent, caregiver, or educator who wants to better understand how to care for children with Autism or ADHD, It Takes A Village champions the age-old benefits of community, challenging and encouraging you to embrace your support group and fill your family with love. Are you ready to start building your village?
This book presents the epidemiology of birth defects and their public health and social implications in India. As neglected childhood disorders, birth defects remain invisible in global maternal and child health dialogues. Birth defects services are emerging in India. This book approaches birth defects from a public health perspective, identifying the core functions of a birth defects service. Keeping in mind the complex task of providing multidisciplinary services for children with disabilities and complex medical conditions, the book examines the basic public health activities that have been put in place to address these conditions in India. The book describes birth defects surveillance and the challenges of acquiring accurate and timely data on birth defects against the background of India’s mixed health system. It discusses opportunities for prevention of birth defects and describes the structure and function of an emergent genetic service. It explores issues related to an integrated service for children with special healthcare needs, such as screening, early intervention, and rehabilitation. Furthermore, it describes the impact of these conditions on caregivers, including birth defects stigma. This book not only addresses a knowledge gap in the field of public health in India, but also explores the broader issues of services for children with disabilities and disabling conditions in low and low-middle income settings where access to health care is not universal. Given the depth and breadth of its coverage, the book offers an essential resource for birth defects researchers, researchers in the field of maternal and child health, public health/ global health, disability researchers, and researchers from the fields of rehabilitation sciences, nursing and anthropology. This book will be a valuable read for social medicine/community medicine departments, global health courses, and public health schools in India and other low middle-income countries.
