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.

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.

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.

Reader Reviews

Email your review to reviews@disabilitiesbooks.com