Description
ISBN 0-07-142269-2
Published 2011 (First edition published by McGraw-Hill in 2004; Second edition by DisABILITIESBOOKS, 2011)
Paperback
223 pages
Reflections from a Different Journey includes forty inspiring and realistic short essays written by successful adult role models who share what it is like to have grown up with a disability and advise parents based on their personal experience.
Summary | Table of Contents | Excerpts | Reviews | Meet the Authors/Editors
Summary
Most parents of children with disabilities lack personal experience with adults with disabilities. Hearing from people who have lived the disability experience can provide all parents with essential information about the possibilities for their children. Reflections from a Different Journey includes forty inspiring and realistic essays written by successful adult role models who share what it is like to have grown up with a disability.
Each eloquently written essay is an insightful source of wisdom, inspiration, and emotional support as well as a rare glimpse inside the lives and minds of people with many different disabilities – cerebral palsy, Down syndrome, autism, learning disabilities, deafness, blindness, mental illness, developmental disabilities, spina bifida, muscular dystrophy, attention deficit hyperactivity disorder, congenital amputation, and chronic health conditions.
In preparing their essays, each author was asked to write about something they wished their own parents had read or been told while they were growing up. The essays, which demonstrates that, first and foremost, people with disabilities are human beings with the same needs and desires as people without disabilities, are arranged thematically:
- “Love and Accept Me as I Am” essays express appreciation for parents who provided unconditional love and a sense of belonging and who accepted them as whole people-including that part of them considered to be a disability.
- “Parents Are the Most Important Experts” essays describe how their parents addressed their unique needs and became the most important experts in their lives.
- “Parental Expectations” essays present different approaches to expectations and standards and encourage every child to have hopes and aspirations.
- “Sexuality” essays explore how all children need to talk about and learn about intimacy and sexuality.
- “Education About Disability” essays explain the importance of why parents and children need to learn all about a child’s disability and how to facilitate necessary accommodations so that each child can enjoy a full life.
The foreword is written by Marlee Matlin, the Academy Awarding winning actress who is deaf. The afterword is written by the book’s co-editor, John D. Kemp, a successful attorney and advocate, who was born without arms and legs.
Brimming with a wealth of life-affirming lessons, Reflections from a Different Journey offers many specific suggestions for parents as well as older children with disabilities, family members, and the education and health care professionals who serve them.
| Foreword | Marlee Matlin |
| Introduction | Editors |
| Part One. Love Me and Accept Me as I Am | |
| Ain’t Done Too Bad for a Cauliflower Disability Does Not Equal Liability What I’d Tell That Doctor Please Believe Me Parents Without Prejudice The Virtues of “Ballpark Normalcy ” Take Me As I Am Please Accept Me-All of Me |
Ross Flood Pat Danielson Jason Kingsley Tamra Garna Gregor Wolbring Lisa Blumberg Mark Enston Dianne Lotter |
| Part Two. Parents Are the Most Important Experts | |
| What’s A Mother To Do The Rules of the “Game” “Deaf People Can Do Anything But Hear The Autism Bomb Solutions From the Heart Creative Pathways My Secret Childhood Existence As Normal As Can Be Another Way of Seeing If Mom Only Knew |
Cathy Putze Jeff Moyer Christina M. Pean Stephen Shore Donna F. Smith Paul Kahn Taryn L. Hook Juan B. K. Magdaraog Deborah Kent Darren R. Cecil |
| Part Three. Parental Expectations | |
| Affirmation and Challenge A Stubborn Sense of Entitlement Independence Lessons from my Mom Go For It! Tapping My Potential The Hand That You’re Dealt Alien or Activist? A Woman in Search of a Big Life Giving Our Children Roots and Wings |
Lucy C. Spruill Mike Ervin Tameeka L. Hunter Douglas N. Little Jamie C. Ray Jimmy Dinsmore Loreen Summers Barbara Ramnaraine |
| Part Four. Sexuality | |
| Relationship Realism Code of Silence My Mother’s Warnings |
Jennifer Malatesta Anonymous Anne Abbott |
| Part Five. Education About Disability | |
| Honesty, The Best Policy No Secrets: A Kid Is a Kid Twice Exceptional Does Your Child Have Epilepsy? So Do I! Learning Was Always Hard for Me Please Don’t Be Put Off By Your Doctor Listening Is the Key As Much Love As You Can Muster Groups Offer Valuable Life Lessons Creating an Individual |
Donna M. Laird Tracy Wright Kassiane Sibley John G. Miers Damaris A. Mills Evelyn Toseland Ross Mattingly Lesley A. Jones Nancy Witt |
| Afterword: Disability Culture Resources for Parents and Family Members |
John D. Kemp |
Excerpts
From the Foreword by Marlee Matlin
In this book, people with all kinds of disabilities make clear that they can be capable role models for children, advisors to their parents and family members, and teachers to educators, healthcare professionals, and the many other adults who provide services for children with disabilities and their families. In fact, the essays have important messages for all of us as we strive to make our world a more caring, loving, and peaceful place for all children and families.
This book is a wonderful celebration of diversity. The essay writers have grown up with many different kinds of disabilities in many different places, including some countries outside the United States. They are not people who have “overcome” their disabilities. Rather, they have overcome the prejudices of society that all too often stereotype people with disabilities in destructive ways.
As some essay authors describe, they could also have become victimized by another kind of prejudice–the prejudice of prognosis. But, their parents did not accept the predictions of well-intentioned physicians and other professionals. With the love and support of their parents, they were not imprisoned by dire prognoses. Instead, they were encouraged dream, to try, to make mistakes, to be active participants in the life of their families and communities, and to reject the limitations suggested by scientific and clinical stereotypes. With the help of these essays writers, I hope that “helping professionals” will appreciate that their prognoses can be based on “truths” that have taken years to evolve, can be based on prejudicial attitudes, and may no longer be accurate.
From the Introduction by Stanley D. Klein, Ph.D. and John D. Kemp
The best way for parents to help their children plan for the future is to meet and talk with adults who grew up with disabilities. These people who have lived the disability experience are a tremendous source of wisdom and inspiration. Yet, many parents do not have such opportunities. Parents and the health care and education professionals who serve children and their families have begun to appreciate that adults with disabilities can be an important source of emotional support and wisdom. However, many health care and education professionals working with children with disabilities and their families also lack experience with successful adults with disabilities and are unable to address parental concerns about “What will happen when my child grows up?”
For this book, adults with different kinds of disabilities and/or special health care needs have written short essays for parents-as well as for older children with disabilities, family members, and the education and health care professionals who serve families. In the invitation to prepare these essays, the authors were asked to write something that they wish their own parents had read or been told while they were growing up. We hope that the range of personal perspectives provides not only emotional support and inspiration but also practical child rearing information. In addition, we are confident that these essays will instill a stronger sense that adults with disabilities can and do make vital contributions and are tremendous role models as well as advisors to families and professionals…
Our essay writers are relatively ordinary, accomplished individuals-they are not superstars. All too often, the media focuses its attention on the relatively few individuals who happen to have disabilities who do extraordinary things. The result is a different kind of prejudice-people with disabilities are to be superstars. While such an attitude may be an improvement over excluding people with disabilities from participation in community life, we hope that this book will illustrate that people with disabilities are just like everyone else-each with his or her own strengths and limitations, striving for a decent quality of life.
From “Code of Silence” by Anonymous
I look back now and wonder if I had had a traditional family, would the empty spot have been filled. Maybe there’s a wholeness that comes with children, which I will never know, and all of my life I’ve been trying to deny it and run away from it or at least trivialize it. I ask myself why I’ve never wanted children in my life, when everyone else, it seems, does. I read about people who will do almost anything to have biological replicas, and I truly don’t understand it. All of my siblings have children. It never seemed to be a choice, just a natural progression of their lives. We all went to college and graduated and mortgaged houses and married, but then the parallels ended. Now, in my 40s and starting to ask myself why I don’t have misgivings, I’m going all the way back to try to figure it out.
My friends and I were always playing house, but, I don’t remember any adults ever saying to me, “When you’re a mommy… ” Or, “When you get married… ”
My parents seemed to have a pact to treat me “normally,” like all the other kids in my family. But when it came to anything sexual, not just having children, they seemed to put their rule of equity aside.
I don’t know why, I have never understood it. But I see it now as a cultural characteristic that they could not transcend or trash, this refusal to assume that anyone disabled was a sexual being. I have tried most of my life to ignore this insult, but its always hovered on the edges of my dignity, threatening to eat it away. When I realized that my mother didn’t expect me to get married or encourage me or ever mention my having children except in horror, I concluded that she was as ignorant as the culture. And hung up on sex to begin with. But, I have to admit that it still hurt me.
Reviews
“As the mother of a son with profound physical disabilities, I want every parent of a child in similar circumstances to read this remarkable eye-opening book. The lessons it brings from adults with disabilities are essential to giving our kids the start they deserve, and to understanding how close their hopes and aspirations are to kids we see as ‘normal.'” –Judy Woodruff, former anchor, CNN
“A fabulous contribution to the field of disabilities. Parents everywhere need to read this book. Everyone involved with children with disabilities needs to read it. It answers so many questions about what works and what doesn’t. And it answers the questions in the most reliable manner–in the voice of the son or daughter.” —Patricia McGill Smith, former Executive Director, National Parent Network on Disabilities
“The significant education for those helping, supporting, advising, and motivating people with disabilities is in listening to them. These writers with disabilities are brilliant in portraying their lives with pathos and even humor. Professionals and parents, trying to achieve equality for people with disabilities must read this masterpiece.” –Henry Betts, M.D., former Medical Director and CEO, Rehabilitation Institute of Chicago
“Advice to parents about how to raise and guide their children with disabilities is rarely offered in such a compelling and insightful way as it is in Reflections From A Different Journey. Nobody says it any better than people with disabilities themselves when topics such as risk-taking, social acceptance, envisioning a life of greater independence, and all the challenges confronting any parent arise. These essays will educate, inform and entertain every parent who wants to know how to be the very best parent each can be.” –Former Senator Robert Dole
“Parents of children with disabilities…could use the advice of someone who’s traveled ahead of them but don’t know where to begin to look… I met a whole army of bright, wonderful grown-ups more than willing to help. They jumped off the pages of a new book… They cope with all manner of disabilities, physical and mental. And their stories make up a joyous, life-affirming guide to possibilities…”
–Helen Henderson, Toronto Star
“…a must read for all parents, relatives, and teachers.”–Dyslexia E-Newsletter, Spring 2005
“…comes as close to a how-to manual for parents of children with special needs as any book will ever come…
“Each [essay] makes its point in a way that respects the good instincts parents possess, the grief that we each need to come to terms with, and the desire we each have to help our kids reach their potential…
“The fact that each author has a different set of disabilities does not stop their writing from having a broad application to parents of children with many different kinds of disabilities. The themes addressed are basic to all children: acceptance and love, expectations of success, sexuality, and educating ourselves and others about our children…this book left me feeling empowered and able to accomplish the task that is before me. I have a better idea of what my job as ‘mama’…and how it will need to change as the boys grow. This book will be a resource to me as the boys enter each new stage of growing up inside a body that is different from that of others.”–Robin Hurd, Parents’ Corner, AAC Institute, Edinboro, PA
“…an extraordinary new book. It should be required reading for all professionals and advocates working with children or adults with disabilities and their families. Parents will find it particularly useful.
“The essays are very moving and inspiring—and their messages linger. While some essays are critical of parents, the dignity and wisdom of each one illustrates that adults with disabilities can and do make vital contributions to their families and communities.” —Ginny Thornburgh, Director, Religion & Disability Program, American Association of People with Disabilities (AAPD) and Lorraine Thal, Program Officer, Religion & Disability Program, AAPD
“…the essays do not tend to the extreme sentiments of “my parents screwed up” or “my parents were perfect” that one might expect. Instead, most of the contributors offer a nice mix of both positive and negative comments… The resource section includes a few listings that are often missing from such lists, nicely rounding out the text.” —KellyJo Houtz Griffin, Library Journal
“I require this book for my graduate students in special education…The stories in their collective power give aspiring teachers a perspective not easily found in college textbooks. Each essay gives the detail necessary to properly put public school into a lifetime perspective. Teachers need to know what can happen to their students after the entitlement for a free public education has expired.”
–Gerald S. Fain Ph.D., Professor, School of Education, Boston University
“Looking to engage your students and teach them the importance of believing in students when no one else does? Reflections from a Different Journey is a text I have been using in my Exceptional Children and Their Families course for the past seven years. Year after year students rave about this text and comment on the impact it has had on them, even years later. It’s a book I would recommend to everyone; but, it is a must read, especially for those working in any capacity with anyone with a disability.”
—Lauren McFadden, Ed.D., Assistant Professor, Seton Hall University
Meet The Authors/Editors
Stanley D. Klein, Ph.D., a clinical psychologist, university educator, and frequent speaker to parents and health care and education professionals from Brookline, Massachusetts, has worked with children with disabilities and their parents for fifty years and has received numerous national awards for his work. A co-founder and former editor-in-chief of Exceptional Parent magazine, he has co-edited The Disabled Child and the Family (Exceptional Parent Press, 1985), It Isn’t Fair: Siblings of Children with Disabilities (Greenwood Publishing Group, 1993), You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities (Kensington Books, 2001) and From There to Here: Stories of Adjustment to Spinal Cord Injury (No Limits Communications, 2004; DisABLITIESBOOKS, 2011). He lives in Brookline, Massachusetts.
John D. Kemp became the President & CEO of Abilities! of Albertson, NY, a national disability service and education organization in 2011. Prior to Abilities!, John was a principal in the Washington, DC law firm of Powers, Pyles, Sutter, & Verville, P.C., and had a federal disability law and legislative practice. John has served as chief executive officer of United Cerebral Palsy Associations, VSA Arts, HalfthePlanet Foundation, U.S. Business Leadership Network, Disability Service Providers of America, and The Abilities Fund. He has also served as a member of several nonprofit boards of directors, including the American Association of People with Disabilities (co-founder), Independent Sector (vice chair) and the U.S. International Council on Disabilities (chair). In 2006, John received the Henry B. Betts Award, America’s highest honor bestowed for disability leadership, service and advocacy. A much sought-after keynote speaker and humorist, John delivers many major addresses each year at conferences, conventions, and annual meetings. He is married and lives in Roslyn, NY.
