Melody's Gifts: An Inspirational Story of a Family's Determination That Neither Cerebral Palsy nor Mental Retardation Would Silence Melody's Song

Melody’s Gifts

An Inspirational Story of A Family’s Determination That Neither Cerebral Palsy Nor Mental Retardation Would Silence Melody’s Song

Louise Wade

(With Sheila D. Nelson)

Copyright © 2009 by Louise Wade.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

A portion of the proceeds from the sales of this book will go to Craig Springs Church Camp in Craig County, Virginia. These funds will help them in their week of camp each summer for individuals with special needs. Her week each summer at this camp is a favorite time for our Melody.

Another portion of the proceeds will go to The ARC (Association of Retarded Citizens) of the United States, an organization whose purpose is to advocate for the rights and full participation of all individuals (children and adults) with intellectual and developmental disabilities.

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Contents

DEDICATION

DISCLAIMER

ACKNOWLEDGEMENTS

FOREWORD

PREFACE

CHAPTER ONE

CHAPTER TWO

CHAPTER THREE

CHAPTER FOUR

CHAPTER FIVE

CHAPTER SIX

CHAPTER SEVEN

CHAPTER EIGHT

CHAPTER NINE

CHAPTER TEN

EPILOGUE

MELODY’S IMPACT ON OTHERS

APPENDICES

APPENDIX A

APPENDIX B

APPENDIX C

APPENDIX D

APPENDIX E

APPENDIX F

DEDICATION

To my husband, Jack: I could have searched the world over and never found a better Daddy for Melody. He has stood by me for over fifty-three years, making supreme sacrifices with total love and devotion;

To our son, Mike, who patterned his baby sister. His magical, persuasive way still prompts her to telephone him daily;

To our daughter, Wendy, the sister whom Melody adores and whose patience and passion are boundless, her love endless and overflowing;

And to Jennifer Lester, our guardian angel and an answer to our prayers. She is Melody’s host home provider, for which we have endless appreciation, as well as a mentor and best friend whose patience, love and care mirrors that of no other.

Louise Wade

July 2009

DISCLAIMER

We, the family of Melody, want to share our experience on the practical and societal matters of learning to raise a child to be a happy adult. With all Melody’s special challenges, we researched until we developed a way to turn every situation that arose into an opportunity for us and for our special family member.

In this book we have included the best of our recollections and the decisions that we made along the way that were right for our family.

We want this book to give others hope, courage, and some sort of validation that everyone in any family has to choose what works for them at any particular time in the journey being made by the child and the entire family.

There is no one path that fits every family that is faced with caring for a loved one with special needs. No method, school, or opinion mentioned in this book can be viewed as the only, or perhaps even the best, path available for your particular family. We all just have to do the best we can with the current knowledge available to us at the time. It is not our intention to endorse any specific program or material, but only to share our experiences.

Some of the names in this book have been changed; many have not been changed because we purposely want to recognize the ones who have made such positive impacts on our lives.

ACKNOWLEDGEMENTS

I would like to thank the team of patterners in Green Ridge, Pennsylvania who were so much a part of Melody’s early years of learning to crawl, creep, walk and talk.

Huge thanks to each and every special education teacher over the years, as well as the folks at the workshops, especially Amy in Waynesboro, Virginia.

We greatly appreciate the staff at each group home. We trusted you with our precious daughter Melody. Rosie at Sunshine Place in Harmony as well as Barbara and Jennifer at Elm Tree in Pearisburg, Virginia became significant in our lives.

I want to express my gratitude to my colleagues over the thirty-five years who teamed with me to assure our positive impact in the lives of folks with special needs. Betty Jo Bartin, music teacher at Pinkard Court in Roanoke, Virginia; John McClure at Keystone Area Education Agency in Dubuque, Iowa; and Jeananne Dixon at New River Community College in Dublin, Virginia all made me a better person.

A special thanks to Nancy Ruth Patterson, my University of Virginia writing professor; Stephanie Morgan, my writing partner, and her husband Paul for editing; classmates in the Roanoke writing group; and Jenene Johnson in Dublin, who typed week after week. I appreciate Emily Gabrysch and Daniel Burdess, students at New River Community College, who designed the book cover that is so appropriate.

A special kudos to Kathy Byrd and Jackie Hunter, who proof-read and critiqued the manuscript prior to submission to the publisher. They are the best!

Jeananne Dixon of NRCC has written a priceless foreword I appreciate so much.

Sheila Nelson has my eternal gratitude, for she is the one who recognized the value of getting this book to the publisher and made it happen. Thanks a million!

GOD BLESS!!!

FOREWORD

What follows is an entertaining, touching, and insightful book written with love by an amazing mother, college professor and always optimistic individual.

This author can find a magic solution or strategy to teach anything to any child, adult, or animal in the universe! We all want our children to live up to their potential, but this author helps us to find the optimal level in every human being and, most importantly, helps each of them to celebrate the joy of reaching for his/her own star in an individual way.

Each and every situation in this book is true. Each serves to simply introduce and illustrate ideas that are familiar. Teachers and individuals can find creative ways to improve the daily lives of everyone we meet. Louise Wade gives us that special pathway to improve the joy and happiness of every family member.

What a special blessing it has been for me to watch this magic lady work with so many special children and her own precious Melody.

Jeananne Dixon

Coordinator—LEAP—Learning Achievement Program

New River Community College

Dublin, Virginia (USA)

PREFACE

My Destiny—Melody’s Mother

Many have believed that, somehow, my life was designed in a way to prepare me for adventures and challenges. Although I have now lived over seventy years and faced many challenges and hardships along with joys and pleasures, getting this book written has been by far the hardest endeavor that I have ever undertaken. I’ve wanted to tell Melody’s story to a broader audience for years. My only goal in doing this is to help others facing similar challenges in their families. If even one life or one family is helped and changed in a positive way, then my goal will have been realized. The countless hours, stress, re-lived emotions, and tears will have been worth it all.

Since the book cover was designed early in the process, Melody has prompted me to write the book on many home visits. When asked, Who is the book about? she always grins from ear to ear and points proudly to herself. I am convinced that within her soul and spirit she understands it. She wants her life to matter to others with special needs. The goal is, of course, to provide ideas, strategies, hope and prayers.

Perhaps my early life did prepare me for the many challenges I would encounter throughout my life. I was blessed to be born to a wonderful set of parents. My father, born in Belgium, grew up in Rhode Island where his family spoke only French at home. A brilliant scholar, George Saute’ was a math professor at Rollins College in Winter Park, Florida. As his children were growing up, he sang various college songs to us. My mother, Marie Louise Teague, was born in Fresno, California. Petite with blond hair and blue eyes, she was not only beautiful but was blessed with a phenomenal voice. My parents met when she was a student at Leland Powers studying drama and voice.

George DeWitt, four years older than I, was a dynamite big brother. My earliest memories are filled with his kindness and generosity. He and his wife, Lois, both had Ph.D.’s in Psychology and were the parents of a son and a daughter. I still miss him every day since he tragically took his own life in December 1966.

I also have a wonderful twin sister, Marie. Since she’s older than I am by ten minutes, she reminds me often of her wisdom and that I should listen to her. At birth, we twins weighed a combined fourteen pounds, and our mother only weighed ninety-eight pounds. Marie has brown hair and eyes like Dad, and I have blond hair and blue eyes like Mom. We also seem to have each inherited our very different temperaments from them: Marie has Dad’s easy-going temperament while I am high strung like Mom.

Our parents were very wise. Just as we were definitely not identical twins in looks and temperaments, we each possessed different interests and abilities which our parents encouraged throughout our youth.

I vividly remember a visit to the doctor when I was nine that focused on my hyperactivity. The doctor wisely informed my parents that no medicine would be considered or needed for this condition. They were told just to find a constructive outlet for all my energies. I have always remembered the advice given by this doctor, and have repeated it countless times to parents and teachers as my life has thrust me into consultative positions. Hyperactive is a negative term while energetic is positive. Little did any of us know at the time how essential my abundance of energy would be throughout my life as I faced numerous major challenges.

As a result of the doctor’s recommendation, my parents enrolled me in dance lessons. It became my love, life, and career. I lived to dance, and was blessed with the opportunity to study at the Ebsen Studio in Orlando. Buddy Ebsen’s parents were there. His sister, Ms. Franklin, ran the office area and Eppie Helga was the Master Teacher. Fortunately, I had talent to go with my excessive energy. I rarely sat down to watch others dance, but practiced almost non-stop. I’d keep on dancing even when my feet would bleed.

I’d taken my first dance lesson at age nine, and by age thirteen I was teaching. Eppie appreciated my abilities, and we taught at the Woman’s Club in Cocoa Beach all day every Saturday. At age fifteen, I borrowed my brother’s car and established my own dance studio and even put on a recital. Eppie took me at age sixteen to Pacific Palisades in California, where she lived across the street from Deborah Kerr.

I learned even more with Marge Champion’s dad, Ernest Belcher, in downtown Los Angeles. It was around that time that I became determined to go to New York City to dance. Dad required that I complete one year of college before this could happen, so I skipped my senior year of high school. I have no recollection of fatigue that summer, as I took an English course at Santa Monica Junior College, taught dance at the studio belonging to Wilma (Eppie’s sister) in Pacific Palisades, waitressed for money to pay for my dance lessons with Belcher, and practiced nearly non-stop. I must have really had the high energy level everyone said I did!

At age sixteen I became a freshman at Rollins College, studying and teaching dance. One of the highlights of my life, Operation Songlift, was my introduction to show business. This group of singers from Rollins, with me as the solo dancer, travelled to Iceland and Bermuda to perform at military bases in the afternoons and evenings during the Christmas holidays. By this time, I definitely had been bitten by the performing bug, and was indeed star struck. Although I’d fallen on my back in September, I continued to dance and dance and mind prevailed over matter. I had another fall in the show, but even that didn’t stop me. I longed to tour forever, and was very sad when it was over.

I kept on pushing myself as a full-time college student as well as a dance student and teacher until I could no longer walk. I was distraught and very angry, as I did not have time in my young life for hospitalization, traction, body cast, and the inevitable surgery that had to be done in May.

I was desperate to get on with my professional dance career. Through research I learned that a university in Salt Lake City, Utah offered a ballet major with a minor in modern dance. Because I was extraordinarily determined to reach my goal, neither the great distance nor the fact that I would be totally alone among strangers lessened my enthusiasm.

It was true: I had a selfish, self-centered, and driven personality. I made no apologies for this then or since; it was simply who I was. These characteristics, coupled with tunnel vision and the idea that nothing mattered but dance, made me determined that nothing was going to stop me from reaching the top in my chosen career.

That summer, I was thrilled to work at Camp Circle F at Lake Wales as a drama and dance instructor. My twin sister, Marie, worked on the waterfront staff. The season was half over and summer goals had been met when, with campers in drama and dance programs, I headed home for a long weekend.

Throughout the night I endured pain, the depth of which I had never experienced before. By morning, I was in an ambulance speeding toward the nearest hospital, Florida Sanatorium. My neck became stiff and my body paralyzed. I have mentally blocked out much of what happened during that time after I received the life-altering diagnosis of bulbar and paralytic polio. My parents were told I was not expected to live, and I desperately wanted my life to just be over. No one ever dreamed that I would indeed live, walk, and even have babies.

Everyone at the Camp was given Gamma Globulin shots. This included, of course, my twin sister, Marie. She was allowed to come home to visit me every day, even when I was in quarantine.

As the result of much prayer, the Sister Kenny treatment (daily woolen hot packs), and physical therapy (which continued for months and months), miraculously I began to walk again. I was determined to fight for the chance to return to the University of Utah. With my neck in a brace and on-going physical therapy, I continued to fight my way back. I gave my all to dance but, tragically, I fainted too often. My brain was fine and I continued to choreograph and give it my all, but it would not be enough.

During my first few months at the University of Utah, I had met a darling blond haired, blue eyed young man in a square dance class. As neither of us was interested in a serious relationship (we were both against marriage at the time), we became best friends. He was like a big brother checking out a lot of the guys I dated.

When I returned after my bout with polio, he loaned me his car and was extremely helpful and caring in my recovery. You guessed it: we fell in love for all the right reasons. After he graduated with a Bachelor’s Degree in Physical Education, we rode the Greyhound bus to Tupelo, Mississippi for my brother’s wedding. Later my sister, Marie, was married in a lovely garden wedding at Rollins College.

Jack Wade began to tease me, saying that the two weddings were my signal that it was now fine for us to consider marriage. Six months later, on December 20, 1955, we were married at the Rollins Chapel and moved to Houston, Texas where Jack was a Second Lieutenant stationed at Elgin Air Force Base.

During our time there, we found that the doctors had been wrong again. Not only was I alive and walking, but our son Mike was born in October 1956 at Fort Lee, Virginia. We lived in Roanoke Rapids, North Carolina until Jack left the Air Force to become a District Executive in the Boy Scouts of America in Greensboro, North Carolina. While there, I rolled up the little rug in the living room of our first house and taught dance. I did this to earn money for my tuition to Woman’s College, from which I graduated with a Bachelor’s Degree in History.

We wanted another child, but calculated the years so we would not have two in college at the same time. Melody’s arrival answered our prayers for a little girl who in my mind, at least, would be our little dancer. After we learned the extent of Melody’s problems and the level of care she would require, we were too fearful to have a third child. However, once again God knew best and gave us another daughter, Wendy, who has also enriched our lives beyond measure.

After having three children, I began to focus on an educational goal and employment. I began substituting in Special Education classes and decided to get a Master’s Degree focused on Mental Retardation. I took all the courses I could that were offered in Roanoke, Virginia, and carpooled to the University of Virginia in Charlottesville for the rest. I received my Master’s degree in June 1970 and my Educational Specialist in May 1976.

I taught full time at Pinkard Court in Roanoke County, Virginia, then at Hardy Road in Vinton. During that time I was selected to go to Virginia Tech in Blacksburg with a small group of teachers taking courses related to Learning Disabilities as we developed the Learning Disabilities Program in Roanoke County. During the years before I got a sabbatical to work on my doctorate, I taught at Southview, Catawba, and Glen Grove Elementary Schools.

My experiences through life have empowered me to face challenges on a daily or sometimes even on an hourly basis with Melody. I constantly maintained my faith that the Lord would never send me more challenges than I could meet.

After going through the process of writing this book as well as reading This Is Stevie’s Story by my friend and author Dottie Murray, I have to agree totally with her concluding paragraph. She wrote that the two of us together were destined to use whatever gifts we might possess for the glory of God and for the good of his millions of mentally retarded children, so long as we both should live.

I have a firm belief that the Lord planned my life and meant for Melody to be my child. Her initial diagnosis of brain injury did not shatter me because at the same time we were advised that there was help available. We were relieved to finally receive any diagnosis, because we had known for quite some time that there was something wrong with Melody.

I am convinced that Melody knows that this book will help others. I have never done anything so difficult! I am a mother with a story to tell. I share it in a humble, prayerful way in order to shed some light on the life of my precious angel whom God gave to me to treasure as well as to write about so that other lives might be touched in a positive way.

PART ONE

FIRST STEPS

CHAPTER ONE

LIFE COULDN’T HAVE BEEN BETTER: MELODY’S BIRTH

Spring in Greensboro, North Carolina with dogwood, rhododendron, tulips, and daffodils in full bloom was a fairyland of beauty. Life couldn’t have been better for my husband, Jack, and me as we were awaiting with joy the birth of our second child.

Jack had been promoted to District Scout Executive with the Valley Forge Boy Scout Council. Having bought a home in Aston Township, Pennsylvania, Jack went there to prepare for our move while Mike, our five and a half year old son, stayed behind with me. Our family’s closest friends and Mike’s Godparents, Lloyd and Frances Caster, insisted that we stay with them just in case our second baby decided to arrive early.

Mike and I could hardly contain our excitement on the day the Casters took us to the airport to pick up Jack. Mike ran and leapt into his Daddy’s arms, beaming as he turned his face for extra kisses, but I was moving pretty slowly because our baby was either dancing or kicking a football inside me. Jack had brought pictures of our new three bedroom home with an extra room off the kitchen for my dance studio.

He had made it home just in time, because the doctor planned to induce labor in the office at 5:00 p.m. the next day. The birth announcements were designed with a little Cub Scout in blue and yellow and with a little ballerina in a pink tutu: the one we would send out would, of course, be determined by the sex of the baby, which would not be known until the time of birth.

Throughout a night that seemed to creep along in slow motion I found myself checking the clock every few minutes as I waited sleeplessly for daylight to arrive. The baby was especially active. We recollected the day of Mike’s birth on October 15, 1956 when we had to make a long trip from Roanoke Rapids, North Carolina to Fort Lee, Virginia. We had even taken along our pup, Tippy, on that trip to the hospital. Today there would be no long ride and no dog accompanying us on the trip for this second birth in our family. Mike would be able to enjoy his special time with Lloyd and Frances, and everything was expected to go smoothly.

At long last, the sun rose on April 27, 1962. The day now seemed to race by as we finished last minute errands critical in the preparation for the baby. Finally Jack announced that it was time for us to go, leaving Mike planning supper at McDonald’s with Lloyd and Frances.

As planned, the doctor’s office was empty since I had been scheduled as his last patient of that day. He was going to break my amniotic fluid sac (my water) and we were to head right over to the huge new hospital, Wesley Long, which was nearby. The procedure completed, we drove to the hospital. I muttered nervously to Jack about the large amount of traffic, to which he responded that the traffic was at its normal level for this hour of the day, when we were normally not out in this area.

The short elevator ride in the wheelchair seemed like a long one, as the baby appeared to have decided that its arrival time must be soon. After we were ushered to the appropriate room, I began asking for my doctor every time a nurse appeared at the door. He had promised to come right to the hospital when we did, and I could not imagine what could have detained him for so long. Each nurse would give an answer designed to be calming. The