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Dr. Robert A. Naseef, a psychologist and father of a son with autism, details the daily blessings and challenges of raising a child with disabilities, offering sensitive, real-world advice along the way.
The Americans with Disabilities Act (ADA) and other national policies are designed to ensure the greatest possible inclusion of people with disabilities in all aspects of American life. But as a matter of national policy we still place the lion's share of responsibility for raising children with disabilities on their families. While this strategy largely works, sociologist Dennis Hogan maintains, the reality is that family financial security, the parents' relationship, and the needs of other children in the home all can be stretched to the limit. In Family Consequences of Children's Disabilities Hogan delves inside the experiences of these families and examines the financial and emotional costs of raising a child with a disability. The book examines the challenges families of children with disabilities encounter and how these challenges impact family life. The first comprehensive account of the families of children with disabilities, Family Consequences of Children's Disabilities employs data culled from seven national surveys and interviews with twenty-four mothers of children with disabilities, asking them questions about their family life, social supports, and how other children in the home were faring. Not surprisingly, Hogan finds that couples who are together when their child is born have a higher likelihood of divorcing than other parents do. The potential for financial insecurity contributes to this anxiety, especially as many parents must strike a careful balance between employment and caregiving. Mothers are less likely to have paid employment, and the financial burden on single parents can be devastating. One-third of children with disabilities live in single-parent households, and nearly 30 percent of families raising a child with a disability live in poverty. Because of the high levels of stress these families incur, support networks are crucial. Grandparents are often a source of support. Siblings can also assist with personal care and, consequently, tend to develop more helpful attitudes, be more inclusive of others, and be more tolerant. But these siblings are at risk for their own health problems: they are three times more likely to experience poor health than children in homes where there is no child with a disability. Yet this book also shows that raising a child with a disability includes unexpected rewards—the families tend to be closer, and they engage in more shared activities such as games, television, and meals. Family Consequences of Children's Disabilities offers access to a world many never see or prefer to ignore. The book provides vital information on effective treatment, rehabilitation, and enablement to medical professionals, educators, social workers, and lawmakers. This compelling book demonstrates that every mirror has two faces: raising a child with a disability can be difficult, but it can also offer expanded understanding. A Volume in the American Sociological Association's Rose Series in Sociology
"I simply could not put this book down! It is very well written and makes me feel like I am sitting in Press and Gena's living room talking about their experiences. I love the Chapter Take Aways and the stories from other families. Readers will feel inspired with new direction. I only wish this was available years ago as our family began our journey caring for our son with autism." Didi Zaryczny Chairperson, disAbility Resource Network "As a parent of a disabled child, I find this book to be an immensely valuable resource. The Barnhills offer practical help for navigating the emotional and relational pitfalls common to those in our situation. Their advice is concrete, realistic, and encouraging." Andrew Dunks Pastor and father of a teenage son with brittle-bone disease
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.
Cultivate effective partnerships between parents and professionals through honest, respectful and skillful communication The authors draw upon the metaphor of "dance" to better understand the complexities and possibilities of forming partnerships between educators, administrators, early childhood providers, therapists, support staff, other professionals, and parents of children with disabilities. This revised edition of Do You Hear What I Hear? Parents and Professionals Working Together for Children With Special Needs is rich with stories, examples, and practical insights. This book, written from both the parent′s and the professional′s points of view, provides a developmental approach to understanding and forging positive adult relationships, while also providing concrete ways to advocate for children. The authors′ years of experience as successful consultants, trainers, and educators lends this helpful resource a deep sense of realism and compassion. They remind the reader of how essential the parent-professional partnership is—and why it IS a dance that matters. Key features include: Practical insights and evidence-based approaches to forming partnerships Easy-to-read, non-technical language that speaks to both the heart and the mind Sample letters and other forms of communication shared between professionals and parents Stories and examples of real-world conversations between parents and professionals Effective ways to handle difficult situations Rich with humor and heart, this highly readable book offers helpful steps for self reflection, personnel preparation, and parent-professional training. Educators and parents will find expert guidance for listening to each other′s music, trying out each other′s dance steps, and working toward a new dance that includes contributions from all—with the ultimate reward of seeing children achieve their highest potential.
In a straightforward and empathetic tone, Adelizzi and Goss sensitively offer support to parents of children with learning disabilities who wish to see their children grow to their full potential. While juggling the complex expectations imposed upon them, parents often combat confusion, anger, fear, sadness, and frustration. This book will help diffuse these overwhelming feelings, empowering parents with the ability to provide the academic and personal support their children need to thrive. Adelizzi and Goss, who contribute to a unique and highly successful collegiate program for adults with LD/ADD, demystify the very fuzzy world of LD terminology and theory and clarify the complicated process of diagnosis and treatment. They shed light on the way children and adolescents with learning disabilities function in the home environment, in social relationships, and at school. Parents will find new understanding and hope as the authors--with the collective voice of parents and children who deal with LD every day--lead them through the maze of issues they must confront.
Conversations with Families of Children with Disabilities creates a space for diverse families of children with disabilities to share their stories with pre-service and in-service teachers. Specifically designed for professionals preparing to work with families of children with disabilities, this text invites the reader to listen in as families reflect on their personal journeys in conversation with the authors. This powerful book helps educators develop a deeper understanding of families and enhance their capacity for authentic partnerships.
Sometimes life throws you a curveball. Andrew and Rachel Wilson know what it means to live a life they never expected. As the parents of two children with special needs, their story mingles deep pain with deep joy in unexpected places. With raw honesty, they share about the challenges they face on a daily basis—all the while teaching what it means to weep, worship, wait, and hope in the Lord. Offering encouragement rooted in God's Word, this book will help you cling to Jesus and fight for joy when faced with a life you never expected.
The needs of children and parents about play when the child has a disability are explored by mean on surveys to disability associations and families were collected during 2016 in 30 countries by members of the EU COST LUDI network Play for children with disability.The users' needs concerning play for children with disabilities are also explored by mean of case studies at a country level, based on literature reviews of avialable reports and emprirical studies in Finland, Lithuania and Sweden.