What Adults with Disabilities Wish All Parents Knew

Stanley D. Klein and John D. Kemp, Editors. Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew, 2nd Edition (disABILITIES Books, Brookline, MA: 2011).

$24.00 from the publisher -- order on Amazon.

There are plenty of advice books on the market for parents of children with special needs, but most are written by parents or professionals who work with families of children with special needs. In essays ranging from funny to touching to sad, Reflections from a Different Journey takes a different approach, collecting wisdom for parents of children with special needs from the source: adults who grew up with special needs.

These unflinching portraits, written by people with special needs in their individual voices, offer readers insight into what it's actually like being a child with special needs, all in an effort to answer the question "What do you wish your parents had read or been told when you were growing up?" Some of the 40 essays included in this fascinating book are funny, others are highly critical of schools and doctors who often came up short in an age when people with special needs were regularly institutionalized, but each essay includes, at its heart, the wisdom of experience along with a touch of hope for today's generation of parents.

Loosely organized around five general topics, including "Love Me and Accept Me as I Am" and "Parental Expectations," the essays are, above all, personal statements from highly accomplished people with special needs, whom the editors rightly call role models. Lawyers, writers, activists, playwrights, government workers, stay-at-home parents, students and medical professionals all have a chance to offer their suggestions for todays parents.

But Reflections from a Different Journey is more than a collection of feel-good anecdotes from people who have triumphed over their special needs. Instead, it is a hard-hitting and often brutally honest exploration of growing up with special needs. Many of the writers criticize (some subtly, some not) their parents for failing to teach them the skills that they would need to achieve independence as adults, and others strike back at families who accepted the often dubious advice of a doctor instead of pushing for more services and information about their loved one's condition. But at the same time, there are many testimonials about parents who always encouraged their children and who fought hard in a far less enlightened era to help their children achieve self-respect. While the stories about bullies tend to outnumber the tales of compassionate playmates, a few of the essays sound like they were dreamed up by Hollywood screenwriters. In one case, the classmates of a child with special needs quite literally stand up for him in the locker room after he reached the end of his rope and bludgeoned a particularly persistent bully in the head with his prosthetic leg.

Although this book is geared towards parents and should be read by any parent of a younger child with special needs, it is also a valuable book for teenagers who may feel that no one else understands what they are going through. The book is also remarkable in the wide variety of special needs that are represented, from cerebral palsy to ADHD to spina bifida to blindness. In an age where each individual special need has its own advocacy organization (a good thing and a reflection of how far we have progressed since some of the authors of these essays were children), it's helpful to read about a range of experiences and conditions instead of focusing on one in particular.

Reflections from a Different Journey is a unique, impressive book by voices that everyone should hear.