Coming Together For Children With Disabilities

"Carolyn is in a wheelchair, but she doesn't let that stop her! She can do almost everything the other kids can, even if sometimes she has to do it a little differently"--

The story of Jamie Bérubé’s journey to adulthood and a meditation on disability in American life Published in 1996, Life as We Know It introduced Jamie Bérubé to the world as a sweet, bright, gregarious little boy who loves the Beatles, pizza, and making lists. When he is asked in his preschool class what he would like to be when he grows up, he responds with one word: big. At four, he is like many kids his age, but his Down syndrome prevents most people from seeing him as anything but disabled. Twenty years later, Jamie is no longer little, though he still jams to the Beatles, eats pizza, and makes endless lists of everything—from the sixty-seven counties of Pennsylvania (in alphabetical order, from memory) to the various opponents of the wrestler known as the Undertaker. In Life as Jamie Knows It, Michael Bérubé chronicles his son’s journey to adulthood and his growing curiosity and engagement with the world. Writing as both a disability studies scholar and a father, he follows Jamie through his social and academic experiences in school, his evolving relationships with his parents and brother, Nick, his encounters with illness, and the complexities of entering the workforce with a disability. As Jamie matures, his parents acknowledge his entitlement to a personal sense of independence, whether that means riding the bus home from work on his own, taking himself to a Yankees game, or deciding which parts of his story are solely his to share. With a combination of stirring memoir and sharp intellectual inquiry, Bérubé tangles with bioethicists, politicians, philosophers, and anyone else who sees disability as an impediment to a life worth living. Far more than the story of an exceptional child growing up to be “big,” Life as Jamie Knows It challenges us to rethink how we approach disability and is a passionate call for moving toward a more just, more inclusive society.

Children with disabilities and complex medical and educational needs present a special challenge for policy makers and practitioners. These children exhibit tremendous heterogeneity in their conditions and needs, requiring a varied array of services to meet those needs. Uneven public and professional awareness of their conditions and a research base marked by significant gaps have led to programs, practices, and policies that are inconsistent in quality and coverage. Parents often have to navigate and coordinate, largely on their own, a variety of social, medical, and educational support services, adding to the already daunting financial, logistical, and emotional challenges of raising children with special needs. The unmet needs of children with disabilities and complex medical and educational needs can cause great suffering for these children and for those who love and care for them. To examine how systems can be configured to meet the needs of children and families as they struggle with disabilities and complex health and educational needs, the National Academies of Sciences, Engineering, and Medicine held a workshop in December 2015. The goal of the workshop was to highlight the main barriers and promising solutions for improving care and outcome of children with complex medical and educational needs. Workshop participants examined prevention, care, service coordination, and other topics relevant to children with disabilities and complex health and educational needs, along with their families and caregivers. More broadly, the workshop seeks actionable understanding on key research questions for enhancing the evidence base; promoting and sustaining the quality, accessibility, and use of relevant programs and services; and informing relevant policy development and implementation. By engaging in dialogue to connect the prevention, treatment, and implementation sciences with settings where children are seen and cared for, the forum seeks to improve the lives of children by improving the systems that affect those children and their families. This publications summarizes the presentations and discussions from the workshop.

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.

Introduction to the core concepts of teaching and supporting children with disabilities alongside their peers will help teachers ensure that all children meet their potential.

When his oldest son was diagnosed with severe autism, pastor Jason Hague found himself trapped, stuck between perpetual sadness and a lower, safer kind of hope. This is the common struggle for those of us walking through the Land of Unanswered Prayer. Life doesn’t look the way we expected, so we seek to protect ourselves from further disappointment. But God has a third path for us, beyond sadness or resignation: the way of aching joy. Christ himself is with us here, beckoning us toward the treasures hidden in the darkness. Aching Joy is an honest psalm of hope for those walking between pain and promise: the aching of a broken world and the beauty of a loving God. In this place, rather than trying to dodge the pain, we choose to feel it all—and to see where Jesus is in the midst of struggle. And because we make that choice, we feel all the good that comes with it, too. This is Jason’s story. This is your story. Come, find your joy within the aching.

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.