You Will Dream New Dreams: Inspiring personal stories by parents of children with disabilities

Over sixty short essays by “veteran” mothers and fathers of children with varying disabilities tell the stories they wish they could have heard when they learned their own child’s diagnosis. Essays share words of validation, affirmation, support, and encouragement. Very positive reviews by Fred Rogers (Mister Rogers Neighborhood), Ann Landers, and many parent organizations..

From the time a pregnancy is identified, most parents begin building hopes, dreams, and expectations for their new baby. These dreams can be suddenly shattered when a child is diagnosed with a disability or special health care needs.

Although compassionate physicians, nurses, social workers, and other health care professionals may try to provide emotional support and useful information, most parents describe feeling terribly alone with feelings they can find hard to put into words. Many parents and professionals have suggested that the diagnosis of a child’s disability initiates a mourning process in parents, much like the grief felt when a child dies. Yet the child is alive and parenting must proceed.

This book is all about human connections – ‘veteran’ parents reaching out to parents who have recently learned that their child has a disability or a special health care need. The compassion and caring of these very special connections can be healing at a critical time in the life of a family.

To create this book, the editors asked “veteran” mothers and fathers of children with disabilities to tell the stories they wish they could have heard at that emotionally difficult time, to share words of validation, affirmation, support, and encouragement. Although the authors of these essays have had very different experiences differences that are reflected in the stories they tell -- similar messages of hope and encouragement come through in each of the sixty-three essays.

You are not alone.
The wide range of difficult feelings you are experiencing are a normal part of the human experience. We, too, have been there when everything seemed hopeless; yet we have survived, and our lives have continued. You can go on and grow.
Although there are no easy answers, you will find ways to cope. You are likely to discover inner resources you didn't not know existed.
There is sadness; some dreams are lost. You will mourn, but you can heal. You will be happy again; you will dream new dreams.

In You Will Dream New Dreams: Inspiring personal stories by parents of children with disabilities, a compassionate, deeply felt collection of writings, you’ll discover the common ground of emotions shared by parents of children with disabilities. Real life mothers and fathers of kids with cerebral palsy, Down syndrome, autism, mental retardation, and life-changing illnesses speak from the heart on how they mourned for the child of their dreams…learned the importance of turning to friends instead of being “strong” all the time…experienced the wrenching disappointment of letter go of certain expectations for their child…and found the unexpected job discovering new dreams.

Healing, coping, surviving, and even being happy again; these messages of encouragement and hope, from parent to parent, offer a helping hand when it is most needed—during tough days or anytime true understanding can make all the difference.

Foreword: Dick Thornburgh
Introduction: Stanley D. Klein, Ph.D., and Kim Schive
What Can I Say?: Geralyn Anderson Arango
How to Be My Daughter's Friend Melissa: J. Himelein
Life Is Good: Susan Sivola
Hope for Little Hearts: Lenore Cameron
He Has Stars in his Eyes Hope: C. Thorpe
Looking Toward the Future Unafraid: Terrin Pelham
Too Much Reality: Pamela Simmons
Aidan's Gift: Valle Dwight
The Future Is Now: Albert Freedman
Redefining Perfection: Albert Freedman Albert Freedman
Getting to Know My Son: Karen Ciaccio
Trust Your Instincts: Carol Gordon
It's OK to Have Hope: Lynne Gregorio
I Have Learned: Eric C. Last
Hard Choices: Laura Salomons
Trophy of Grace: Leslie Neugent
Go Ahead and Lose Control: Colleen Jesaitis
Talk to Me: Karen Scoggins
Learning to Cope: Melody Stebelton
An Evolution of Emotion: Casey Cunningham
Beyond the Diagnosis: Mary Stephens
I Am a Father: Christopher J. Beveridge
Our Journey: Donna Cohen
What to Say: Sandra Assimotos-McElwee
"Mother Seems Overly Concerned": Caryle Seim
Skip the Guilt: Janice M. Block
Readiness: Cindy Daniel
Turning Obstacles into Triumphs: Diane Stonecipher
Being Kip's Mom: Melody Grant
Dreams: Ann Waldrop
Having Everything: Jan T. Skoby
Be a Parent First: Jo Ann Spencer
The Perfect Daughter: Michael T. Bailey
Silver Linings and Everyday Clothes: Joan Killough-Miller
Raising Answers: Julia Shure
Double Whammy: Carolyn Carasea
Welcome to the World: Nancy E. Holroyd
"Normal" Lives: Karen L. Higginbotham
Finding Our Way: Nate Terrell
Parent Support to the Rescue: Jennifer Titrud
Unconditionally Yours: Elaine Tillman
I Wish: Barbara J. Ebenstein
Survival Skills 101: Paula Holdeman
A Change of Plans: Janis Cloakey
Time: Mary Jane Kithens
Lessons from Our Life with Matt Joyce: Millard-Hoie and John Hoie
The Woman in the Picture: Carolyn Schimanski
Congratulations!: Jennifer M. Graham
Journal Entries: Anonymous
Different Dreams: Kim Kaster
Traveling a Different Path: Maureen S. Penton
Chicken Soup for the Special Family's Soul: Carolyn Anderson
The Green Bike: Sally Cash Ragsdale
The Journey: Jillian K. Welch
The Ride: Susan Helling
The Rudest Awakening: Robert A. Naseef
Get Over It!: Jo Ann Simons
Mission of Love: Trena Tremblay
Welcome to Holland: Emily Perl Kingsley
We Let Them Lead Us: Nathan and Louise J. Elbaum
When My Daughter Became Blind: Mary McHugh
You Are Not Alone: Patricia McGill Smith
Lessons Learned: Donna L. Roberts

Resources for parents and family members:
Parent Training and Information Centers
Parent-Matching Resources
Early Intervention, ages 0-2
Early Intervention, ages 3-5
National Resources
Internet Resource Sites
Clearinghouses
National Disability
Organizations

From the Foreword

You are not alone. My wife and I have been there and we have learned to dream new dreams. On July 1, 1960, our son, Peter, then an infant only four months old, was involved in a terrible automobile accident which took the life of his mother, my first wife. For a considerable period of time, his very survival was in doubt. He had multiple skull fractures and serious brain injuries which resulted in his having mental retardation.

…While in the hospital with tubes running in and out of his tiny body, he was baptized. He returned home just before Christmas and our family life began anew.
After spending three years as a single parent to Peter and his two older brothers, God sent me Ginny Judson, a schoolteacher who I met and married in 1963. In 1966, Ginny and I added a fourth son to our family.

…it has always been very special for us to meet and talk with other parents who have shared similar experiences. We have been comforted and nourished by other parents; we have wept together and we have laughed together. We never perceived one another as superstars or martyrs; we were mothers and fathers discovering our gifts while trying to be the best parents we could be.

I have also been uniquely blessed with opportunities to apply the lessons I have learned as a parent in public life. In 1978, I ran successfully for governor of Pennsylvania and served two four-year terms. Peter was a fine campaigner, a popular subject for campaign photos and a frequent participant in official activities after I was elected. Our feeling was one of pride in Peter's accomplishments, not reluctance to share his shortcomings. Everyone in Pennsylvania knew that the governor had a son with a serious disability…

Later when I served in Washington, D.C., as Attorney General of the United States, one of my principal tasks for President Bush was to spearhead the effort to obtain congressional passage of the Americans With Disabilities Act (ADA), the civil rights law designed to end discrimination against persons with disabilities and remove barriers to their participation in all aspects of community life. Once again, it was parents, parent organizations and organizations of people with disabilities who helped develop bipartisan support for this legislation.

When I served at the United Nations, I had an opportunity to observe how the needs of some 500 million persons with disabilities around the world are beginning to be met -- through the UN's own program of action and in many nations that are using our ADA as a model. Today determined advocates throughout the world, including many parents, are stimulating new thinking about how persons with disabilities can best serve and be served in their societies…

In this book, more than 60 parents who have "been there" reach out to new parents by sharing their stories and their wisdom. They describe their deepest emotions and reflect on how they have become seasoned, veteran parents. Because of their sons and daughters, their lives and their values changed. They have become informed experts about their children and have found new ways to grow and serve. As veteran parents ourselves, Ginny and I know firsthand that parents' strongest allies will always be other parents and we count ourselves fortunate to have been able to share our experiences with others.

To new parents, grandparents and other family members reading these fine essays, we say with special feelings of respect: "Welcome to a wonderful worldwide community! Keep this book nearby and share its with your family and friends. You are not alone."

Dick Thornburgh
Washington, DC

The greatest gift any one of us can give is the gift of our honest self. How generously these parents have shared their feelings—crowned with hope—in the pages of this exceedingly helpful book."

… a rich mixture of personal stories, insights and information. I wish I'd had this book fourteen years ago when my son's autism was first diagnosed. I highly recommend You Will Dream New Dreams to all new parents, especially those who have a child with a disability, of course, but to others as well. And I also encourage grandparents, uncles, aunts, and other family members to read this book.

Knowing that "parents' strongest allies will always be other parents," Klein and Schive have collected from all over the country stories by parents of children with special needs. You Will Dream New Dreams is a remarkable parent's support group in print. The shared narratives come from those with newly diagnosed children, adult disabled children, and everything in between; their stories are short and unfold in plain language just what the parent suffering from informational and emotional overload needs..offer hope and encouragement and serve as a reminder that there are others out there who can help. The appendix includes resources to help parents track down local information and support…Essential for all consumer health collections.

…includes pieces like “Hard Choices,” on the painful decision to place a brain-damaged child in a group home, and “Getting to Know My Son,” on a mother’s struggle to accept—and love—a child with Down syndrome…offers emotional support to disabled children’s families and should help educators and health-care professionals better understand these parents’ perspectives.

I would like to recommend an inspiring and helpful book for all parents of children with disabilities. It is "You Will Dream New Dreams"…is a compilation of stories by parents who have dealt with the challenges of raising special-needs children. They speak with the authenticity of their experiences and optimism about the future.
Ann Landers May 20, 2001

…easy-to-read book contains more than sixty short essays from mothers and fathers of children with varying disabilities, including Down syndrome, autism and cerebral palsy. It is written for new parents who often feel deluged with and overwhelmed by too much information and who need to feel that they are not alone. Each essay is written by a “veteran” parent and presents an honest and open portrait of raising a special child. Some stories bring tears to your eyes, others will bring joy to you heart. It is well worth the read and a great gift for new parents.

…helped me deal with some of the feelings of grief and pain as the mother of a special needs toddler. I found hope, inspiration, and understanding in the experiences of other parents. I wish I had had this book when my baby was first diagnosed! You can read this book in small doses--one or two essays at a time--which I found helpful as mom to a busy little one!
P.S. - Don't forget the tissues when you read it.

Every parent of a special needs child should be given a copy of this book when their child is born. This book really touched me and helped me to deal with my own feelings.

Worth buying and keeping, to use again and again!…This book has rejuvenated me, and renewed my determination to move forward with my little girl. While I still consider myself to be in the grieving stages, and while I do not expect my heart to stop breaking into a million pieces on a daily basis---since reading this book tonight, I feel stronger and more able. Right now, I feel that my heart has been filled with love again, and "something" is holding the pieces together again. As most of you either know or will realize…this moment is what is most important. And this book can make that moment, however long or short it may be, a little better, and more bearable.

…one of the most personally important books I have ever had the privilege to encounter. I am a family member of a person with disabilities and a newly disabled
person myself…well worth reading and re-reading.

As a mother of a son with a disability, reading the essays was an affirming and comforting experience--to know that you are not alone in your feelings and responses. I wish I had had this book available to me 10 years ago! As a pediatrician, the writings of these parents provide invaluable insights into the emotional roller coaster parents experience…the sorrow and joys and the unconditional love they feel for their children. It typifies the incredible wisdom and strengths that evolve in these families. This collection should be mandatory reading for all professionals working with children with disabilities and their families.

Elisa A. Nicholas, M.D., M.S.P.H., Executive Director, The Children's Clinic
Serving Children and Their Families, Long Beach, CA and Director,
Community Pediatrics, Miller Children's Hospital, Long Beach, CA

Every family with a child with special needs to read these essays. It is a wonderful way for them to explore their own feelings. I highly recommend this book for parents as well as health care and education professionals.”

Charles N. Onufer, M.D., Director, Illinois Division of Specialized Care for Children
Assistant Professor of Pediatrics, University of Illinois/Chicago School of Medicine

Stanley D. Klein, Ph.D., clinical psychologist and educator, is currently Education Director, Abilities Expo; Series Editor, People with Disabilities Press, iUniverse.com; and Research Associate in Medicine (General Pediatrics), Children’s Hospital, Boston.

Dr. Klein co-founded Exceptional Parent magazine in 1971 and served as editor-in-chief of the magazine for parents of children with disabilities until 1997. In recent years, he helped Merrill Lynch establish it Families of Children with Disabilities Program and served as “Special Needs Expert” at Parents.com (Parents magazine Web site).

In 1996, he retired, after 19 year, as professor of psychology and Director of the Counseling Service at the New England College of Optometry.

Dr. Klein lectures frequently to health care and education professionals about communicating with parents of children with disabilities, particularly the challenge of delivering difficult diagnostic news. He has lectured on this topic at teaching hospitals and many other clinical and educational settings throughout the U.S. as well as in Greece, United Kingdom, Israel, and Germany.

He began working with children with disabilities in 1954 as a camp counselor while he was a college student. Dr. Klein received his Ph.D. in psychology from Clark University in 1963; he was a Phi Beta Kappa graduate of Lehigh University in 1957.

Dr. Klein is the author of Psychological Testing of Children: A Consumer’s Guide and the co-editor of two books: The Disabled Child and the Family: An Exceptional Parent Reader and It Isn’t Fair: Siblings of Children with Disabilities.

Dr. Klein has received numerous national awards for his work from organizations such as the American Psychological Association, The President’s Committee on the Employment of People with Disabilities and the American Association of Disability Communicators, The National Down Syndrome Congress, National Parents Network on Disabilities, American Academy of Cerebral Palsy and Developmental Medicine, Bethesda Lutheran Homes and Services and the National Easter Seals Society.

He has appeared on many radio and television programs discussing children with disabilities and their families and once served as the on-air child development expert for WEEI, Boston.

Kim Schive is a graduate of Harvard University and a former faculty member in the Department of Psychology at Gallaudet University, the world’s only liberal arts university for students who are deaf.

She has been an associate editor of Exceptional Parent magazine and the editor of various Deaf community publications.

Ms. Schive is deaf and the adoptive parent of an adult deaf son. She lives in Massachusetts.