Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew

by Stanley D. Klein (Editor), John D. Kemp (Editor), Marlee Matlin (Foreword)

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 all children. The book includes forty inspiring essays written by successful adults role models who share what if is like to grow 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—autism, cerebral palsy, Down syndrome, learning disability, deafness, blindness, mental illness, developmental disability, spina bifida, muscular dystrophy, attention deficit hyperactivity disorder, congenital amputation, and chronic health conditions. Essay authors were asked to write about something they wish their own parents had read or been told while they were growing up. The essays demonstrate that people with disabilities are human beings with the same needs and desires as all people. The essays are arranged “Love Me and Accept Me as I Am” essays express appreciation for parents who provided unconditional love and a sense of belonging and accepted their children as whole people—including that part of them considered to be a disability. “Parents Are The Most Important Experts” essays describe how writers’ parents addressed their unique needs and became the most important experts in their lives. “Parental Expectations” essays present different approaches to expectations 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 why it is important for parents and children to learn all about a child’s disabilities and how facilitate necessary accommodations so that each child can enjoy a full life.

Genres: Parenting, Nonfiction, Disability

205 pages, Paperback

First published March 1, 2004

Reviews

[Wealhtheow · Rating 2 out of 5]

A collection of essays about how to raise a differently abled child. The essays themselves are not as interesting as the little author bios at the end. The authors themselves deal with a range of issues, from cognitive difficulties to near paralysis. The use in this collection lies less in the text than in the reassuring subtext that all of these people have happy lives--your child can too.
What I got from this book: advocate for your child. Trust your instincts and don't blindly follow the directions of health professionals. Every disability is a little different, so pay attention and be inventive in how you work with it. Don't be mysterious about visits to the doctor: explain what's going on and make the visit something you're doing *with* your child. One essay spoke of hospital visits turning into adventures, because afterward he'd get ice cream and a trip to a museum. Don't pity your child, or leave them dependent on you; encourage them to make choices (even if at first its as small as what to wear that day) and speak to non-relatives. Don't assume that because your child is disabled, they have no sexuality or chance at romance.

[Jen]

This book of 40 essays is a fascinating (and quick!) read. I would recommend it for EVERYONE, because we all need a little more compassion and understanding toward anyone who has an obvious disability or doesn't look/act "normal."

My favorite quotes from this book:

"I wish that someone would tell parents about the virtues of ballpark normalcy. Ballpark normalcy refers to a life that is not quite normal—but is 'in the ballpark.' This type of life is a little harder than a normal life. It is also a little better because one has the heightened perception and quirky insight that comes from being on the circumference of the mainstream."

"I do not wish to change Mark, nor my own blindness. I truly believe that every life is worth living and that our fundamental equality as human beings springs from the deeper meaning of our common humanity."

"The diagnosis was made by a team of professionals at a school for children with disabilities. 'Atypical Development, Strong Autistic Tendencies, and Psychotic.' Why not throw in the kitchen sink,too?" (ha ha!!!) . . .(years later) . . . "Another evaluation placed me as 'neurotic' rather than 'psychotic.' Things were moving up in the world for me!" I love this guy's sense of humor. :)

"Every person is special in their own way. I walk with a major limp and have a disability. Some people have bad vision and need to wear thick glasses. Other people are born with big noses. All of these things sculpt who we are. We can’t do anything about it but accept it and embrace it."

"If I could rewrite my history . . . I would have been frequently reminded that I was unique and talented instead of only being told, at school, that I was lazy, willful, and not living up to my potential—and being told, at home, that I was a disappointment and embarrassment to the family. I’m sure that my parents really did love me, but in their frustration and disappointment, they forgot to tell me about their love."

[Melanie · Rating 4 out of 5]

I'm really glad I read this book. My hardback copy--which I got from used from the library for 50 cents--was in a pile of books to be read before being given away because I'm cleaning out our library in preparation for our cross-country move. I learned a lot about how to support people living with disabilities and particularly appreciated the range of disabilities represented in the book, everything from muscular dystrophy to obsessive compulsive disorder. The chapter on disability culture was informative. I took special notice of the essay "My Secret Childhood Existence" by Taryn L. Hook about OCD in childhood. I also took special notice of the fact that many of the people living with disabilities whose essays were accepted for this book have a social work education! I'm probably still going to give this book away, but if I ever find a paperback copy I'll be sure to repurchase it.

[Marisa · Rating 5 out of 5]

Fantastic book - compilation of letter from adults with disabilities to their parents. Nice balance of happy stories (parents not listening to the advice of the doctor who said to institutionalize the child) and not so happy stories. Great insight and a must read for SpEd teachers who work with individuals of all ages with special needs.

[Nicole · Rating 5 out of 5]

I am majoring In Special Ed and had to read this book for one of my intro classes. It was is one of the most touching books I have ever read and full of such great incite. I really recommend that any parent with a disability read this book.

[Dayna Hauschild · Rating 4 out of 5]

Eye-opening and insightful

[Amber Ketterman · Rating 4 out of 5]

This is a good book. It definitely is inspiring and eye-opening, especially for anyone who does not have first hand experience interacting with people with disabilities. I highly recommend that anyone working with people with disabilities read this book.

[Rachel · Rating 5 out of 5]

This book offered excellent perspective into a world that is so often only viewed from the outside. As the parent of a child with a disability I treasure the messages these capable adults share and the hope they offer.