LIFE Learning Is For Everyone: The True Story of How South Carolina Came to be a Leader in Providing Opportunities for Postsecondary Education to Young Adults with Intellectual Disabilities
108
LIFE Learning Is For Everyone: The True Story of How South Carolina Came to be a Leader in Providing Opportunities for Postsecondary Education to Young Adults with Intellectual Disabilities
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Overview
“Anyone interested in disability, in education, in helping broaden the horizon of opportunities for young people exiting special education will be the wiser for having read this book. Readable, fast-paced, well written, and instructive—this book provides fascinating and important insight into the brilliant leadership, hard work, and innovative education program development of one individual . . . Donald Bailey”
Madeleine Will
Vice President of Public Policy
National Down Syndrome Society
“Donald Bailey demonstrates the power parents have to create new and better options for their children with intellectual disabilities and makes it clear that the first step in his journey was listening to his son’s dreams and believing that they were possible. In recounting his personal journey of hope, disappointment, and ultimately success, Donald demonstrates that all parents have the power to make change happen. I hope that every person, parent, teacher, and policymaker who reads this book sees in it a reflection of their own potential to make the dream of college into reality. These efforts will pay dividends for years to come for families of students with intellectual disabilities in South Carolina and throughout our country. “
Meg Grigal, PhD
Co-Director, Think College
Institute for Community Inclusion
UMASS-Boston
“This book will inform and empower any American who cares about ensuring that young adults with intellectual disabilities get the postsecondary experiences they deserve to realize their potential. The process that occurred in South Carolina provides a viable blueprint to provide postsecondary options for any young person who is intellectually challenged, regardless of where they live.”
Jim Rex, PhD
Former South Carolina State Superintendent of Education
“This is a must-read story of a family with an unwavering devotion to the education of their son. It seems as though every parent I talk to feels as if they are the only one on this educational journey. With a real-life happy ending, this book provides insight into one family’s educational journey and the impact that the journey will have on generations to come for students with disabilities.”
Edie Cusack
Director of REACH Program at College of Charleston
Product Details
| ISBN-13: | 9781469779294 |
|---|---|
| Publisher: | iUniverse, Incorporated |
| Publication date: | 03/13/2012 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 108 |
| File size: | 1 MB |
About the Author
Read an Excerpt
LIFE Learning Is For Everyone
The True Story of How South Carolina Came to be a Leader in Providing Opportunities for Postsecondary Education to Young Adults with Intellectual DisabilitiesBy DONALD BAILEY
iUniverse, Inc.
Copyright © 2012 Donald BaileyAll right reserved.
ISBN: 978-1-4697-7927-0
Chapter One
WELCOME TO OUR WORLD
My name is Donald Bailey, and if you were to meet me in person, your first impression would probably be that I am a very gregarious, outgoing guy who enjoys life. And I am. But those who know me well know that when it comes to certain things—and especially when it relates to my family—I am also a very private person and very protective of those closest to me. Like many of you, I always considered myself to be an ordinary guy, never expecting my life to take me on a journey of enough interest and importance that people would ask me to make speeches or to write a book about it. You can imagine that no one is more surprised than I am by the demand for this book, and that no one is more gratified than I am by the hard-fought successes that are its reason for being. Looking back, the loss of privacy seems a small price to pay, and looking forward, it is my sincere hope that by making my story public, there are things that I can share with you that will inspire you in your own journey, whatever that might be.
If you are reading this book, you probably have an interest in the world of cognitive disability. Or perhaps you are interested in making things happen—taking on a challenge and refusing to accept a negative outcome. So let me start by saying that I am probably a lot like you. I did not begin this journey with any special skill set that qualified me to do what I did. Before my wife, Caroline, and I learned that our son has a cognitive disability, we knew almost nothing about the issues and challenges that this would bring to his—and our family's—world.
Likewise, while I have always tried to stand up for the things I believe in, I had never felt truly called to champion any cause. One simple but unexpected question from our son changed all that forever. Donald Jr. was a teenager when he asked, "Dad, am I going to college?" Knowing that he had the desire to go and that we certainly wanted him to be able to go, Caroline and I were extremely disappointed to discover that the postsecondary opportunities in South Carolina at that time offered very little hope that our son would, in fact, ever attend college.
So, when it all started, we were just a dad and a mom who, like most parents, dreamed of giving our children every possible opportunity in life. That innocently posed question from our son was a wake-up call, and from that moment on, I realized that the only way this was going to happen for our child was if we stepped up to make it happen. But I am getting a little ahead of myself. Before I go any further, let me first share with you a brief look back at the events that led up to that question so that you can better understand how and why it became my call to action.
In the early 1990s, the Bailey family was much like many American households. Mom (Caroline), Dad (that's me, Donald Sr.), big sister Carrie, and little brother Donald Jr. went about our day-to-day routines of school, work, extracurricular activities, and socializing. Because Caroline was, from day one, a very hands-on and involved mother, it was not long before she began to see aspects of young Donald's behavior that seemed outside the norm.
One of the very first things she noticed happened when Donald Jr. was about three years old: he just stopped responding to people. He would literally ignore them when they greeted him—no response, no acknowledgement. Not long after this behavior started, Donald Jr. began to develop an obsession with, of all things, The Wizard of Oz. Though this was definitely unusual at his age and, therefore, we were somewhat concerned, Caroline continued to do everything she could think of to foster and encourage positive, appropriate behaviors. When Donald Jr. started repeatedly drawing the Yellow Brick Road in chalk on our driveway, Caroline saw this as an opportunity to share time with our son in a fun artistic endeavor. So she and Donald Jr. got creative and worked together on a Tin Man costume—a funnel for a hat, cardboard covered in aluminum foil for the body, and a papier-mâché ax to complete the outfit. Donald Jr. loved it so much that it was hard to get him to leave the house in anything else.
While it is not at all uncommon for a young child to get hung up on a favorite article of clothing for a time, it seemed to us that Donald Jr.'s insistence on wearing this costume to the exclusion of almost everything else was, again, outside the boundaries of what we were seeing with his peers. And there were other obsessions; although at first Donald Jr. didn't want to learn to wash his hands, he then moved into a period where he wouldn't stop washing them. And he was also incessantly brushing his teeth.
So what was going on with our son? Caroline and I wondered. As the red flags continued to appear, we decided it was time to seek professional medical opinions. Caroline videotaped Donald Jr. playing with a friend to document some of his physically awkward mannerisms and movements. We thought he might be having seizures, but an EEG proved this was not the case. Donald Jr.'s pediatrician called these random movements "tics," so our next thought was Tourette syndrome. That possibility was then also ruled out. It turned out that Donald Jr. could actually control these "spasms," and they were mostly a manifestation of nervousness or just plain social discomfort.
We continued to search for the cause of these unusual behaviors, and finally, after Donald Jr. had endured a battery of tests and interviews, Caroline and I literally sat on the edges of our chairs in the doctor's office. We listened in shocked silence to the diagnosis of PDD-NOS. What? We were clueless and more than a little afraid of what this ominous-sounding array of letters might mean—now and for the future of our son and our family.
PDD-NOS (pervasive developmental disordernot otherwise specified), we were told, is within the autism spectrum. As it was explained to us, a child with this condition is like a computer that's missing a chip.Things are processed very slowly. Concepts that are not concrete are difficult to grasp. Difficult to grasp? That was something we certainly could relate to at that moment. And, just in case the specifics of the medical side of the diagnosis were not enough for us to try to deal with, some of the professionals who had assessed our son felt obligated to add a range of gut-wrenching predictions and recommendations, including the following:
"He will never finish school."
"Forget the social aspect—he will never have friends."
"You may want to consider institutionalizing."
And, the comment that really pushed us to our limits, forcing us to confront a raw emotional mix of frustration, anger, and pain:
"I would recommend you talk to a grief counselor—you really need to come to terms with the 'passing,' so to speak, of the child you thought you would be raising and to understand the reality of the son you actually have."
Presumably these experts were well-intentioned and thought they were helping us face reality by being painfully blunt. But when I look at the amazing young man our son is today, I am so grateful that Caroline and I were not, for one second, willing to just blindly accept all the negatives and go down without a fight.
Once we had recovered from the initial shock, we gathered together all the information we had been given and carefully looked at all the options we could consider for our young son. And then—secure in the knowledge that Caroline was my rock and that we were always, in all things, there for each other—I turned to my wife and said, "Well, if we don't try, we'll never know how much he can achieve, will we?"
And with that, we vowed to do whatever it took to give our son every opportunity to reach his full potential. Little did we know what lay ahead.
Chapter Two
SELF-ADVOCACY
If you have never awakened in the middle of the night in a cold sweat wondering what in the world you are going to do about ___________ (fill in the blank with your own personal challenges), let me tell you, it is just plain terrifying. Concerns that may not seem overwhelming in the rational light of day somehow transform into unmanageable, insurmountable obstacles in the dead of night. What should we do to help our son? It was a deceptively simple, straightforward question that brought on many sleepless nights but, unfortunately, no equally straightforward answer.
As I said, our family had been abruptly and unexpectedly thrust into completely foreign territory by our son's diagnosis. Now, not only did we need to understand all the physical manifestations of PDD-NOS, but we also needed to learn about and help him deal with the emotional and social ramifications. We were totally committed to the process, so we plunged headfirst into this world called "Special Needs."
Yes, our son would have some needs that were "special" or different from other children, but he also had many, many needs that were just the same as all children: the need for love, the need for friendship, the need to be valued as a person. The love, at least at home, was not a problem. For Caroline and me, being parents was, and continues to be, a true joy in our lives, and we love both of our children beyond anything that words can convey. This is the foundation of all our efforts and, even in our darkest hours, our personal refuge of comfort and hope.
We embraced the new challenges in our world, doing whatever we could to help Donald Jr. as he struggled to find and establish friendships, providing support and comfort when his efforts made him an innocent target of public ignorance and fear. Our spirits may have dipped, and our hearts were often heavy, but our resolve remained strong. Though progress was slow and the all-too-infrequent victories hard won, we continued to look for new and better ways to enrich Donald Jr.'s life.
It is true that we are fortunate to be living in an era when the Individuals with Disabilities Education Act (IDEA) guarantees "free appropriate public education" (FAPE) to Donald Jr. and others like him. This federal law, enacted in 1990 and reauthorized in 1997, affirms that students who meet the eligibility requirements will have access to Individualized Education Programs (IEPs). In theory, this seems like a wonderful educational guarantee for children like our son. In practice, however, it does not always translate into quality programs or committed educators.
As in all professions, in education there are some teaching standouts—those individuals who go far beyond what is required and who inspire our children to believe in themselves and to not only achieve more, but to want to achieve more. These teachers, in our personal experience with Donald Jr., proved to be much more often the exception than the rule. Teaching, and especially teaching well, is a challenge, and the challenges for those educators who have chosen the area of Special Needs are exponentially greater.
To say that overseeing Donald Jr.'s education was an education in itself for Caroline and me would be the mother of all understatements. While Carrie progressed happily and seamlessly through her elementary, middle, and secondary years, each school year for Donald Jr., and sometimes each semester, brought new and often unanticipated issues. Ensuring that Donald Jr. was getting the appropriate amount of attention and motivation that would help him learn and grow, not just educationally but also socially and emotionally, was our goal. While a scant few of his school experiences were home runs for Donald Jr., most, despite our best efforts, left us feeling that the system had, to continue the baseball analogy, struck him out, or worse yet, kept him confined to the dugout, never even given a chance at bat.
Despite the frustrations and setbacks, we remained very hands-on throughout Donald Jr.'s school years. As we navigated our way through the options that were provided by our local public school system, we continued to search for other programs that might be a better fit and provide him with the structure he needed and, at the same time, give him the opportunities he deserved. We eventually found a program we felt really filled the bill. The one big problem: it was a thousand miles from our South Carolina home.
The Riverview School in Cape Cod, Massachusetts, seemed to have everything that Donald Jr. needed and everything that Caroline and I wanted for him. It is a residential school for students in their middle and secondary years who have learning, language, and cognitive disabilities. The student body is very small—fewer than two hundred students—and, as an added benefit, Riverview has a postsecondary education option that Donald Jr. could seamlessly transition to once he completed the high school portion of the program.
It seemed like the perfect package. But Massachusetts? Could we really let him go? We were concerned about the separation—as much for us, we had to admit to ourselves, as for him. And, after years of free public education, we were looking at a private school program that would cost close to $60,000 a year plus whatever we would end up spending to travel back and forth to Cape Cod. As before, we turned to each other to bolster our resolve, knowing that we were willing to do whatever it took if this was the right place for Donald Jr. And after an on-site visit and interviews, we determined that it was.
We were so convinced that Donald Jr. would thrive in this environment that we didn't delay acting on our decision. We pulled him out of our local school midyear and enrolled him in Riverview halfway through the eighth grade. With Carrie already out of the house and flourishing in her independent young-adult life, Caroline and I now settled into a pattern of spending every other weekend in Cape Cod. These trips were made as much to reassure ourselves that all was well with Donald Jr. as to provide him with the reassurance that Mom and Dad were still very much a part of his life.
And so it went: eighth grade—happily completed, ninth grade likewise, tenth grade—OOPS! Our smoothly flowing grand plan suddenly hit a major roadblock. Home for spring break of his sophomore year and relaxing with family at our favorite vacation hang-out, Donald Jr. suddenly announced he did not want to go back to Riverview the following year. He wanted, he said, to go to the local public high school, with more than twenty-five hundred other teens from his hometown. Wow! We really hadn't seen that one coming.
One of our main life goals for Donald Jr. has been to empower him—to teach him and give him the skills necessary for him to be a self-advocate. And now here he was, standing before us, calmly announcing what he wanted to do with the next couple of years of his life.
In the spirit of "Be careful what you wish for," Caroline and I now found ourselves squarely on the horns of a dilemma. Should we honor our son's wishes and support his self-advocacy, allowing him to return to an educational setting in which we knew from past experience he struggled mightily and which did not always successfully meet the needs of young adults like him? In the big picture, was this in the best interest of our child? And what about the years after high school? If Donald Jr. came home to finish high school, the transition to a postsecondary program at Riverview was no longer in the cards. And to our complete disappointment and utter amazement, we quickly discovered that our home state of South Carolina had no postsecondary options to offer our son—none. Parenting, as most parents will tell you, rarely provides us the luxury of easy decisions on issues that are very obviously black or white. Rather, it's the much more common gray areas that can truly confound us, and this one was a doozy.
Chapter Three
THE DREAM
After many late-night conversations and much soul-searching, Caroline and I decided we could not ignore our son's first steps toward independence. After all, wasn't this what we wanted for him? Wasn't our goal to see young Donald reach a point where he was in charge of shaping his own future?
So, when Donald Jr. returned to Riverview after spring break, he went knowing that we had agreed this would be his last year there, that his high school career would continue back home with us, at the local public school. Caroline and I made our final trip to Cape Cod that June and brought our son home with mixed emotions. Certainly there was pride, an enormous amount of parental pride. Without any outside influence, Donald Jr. had made a decision and had spoken up, letting us know how he wanted his life to proceed. This was a tremendous step forward on his personal journey to becoming a self-sufficient, self-advocating young adult, and we were both extremely pleased by the progress he was making. But was this big step forward destined to be followed by two steps back?
(Continues...)
Excerpted from LIFE Learning Is For Everyone by DONALD BAILEY Copyright © 2012 by Donald Bailey. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Foreword....................xiSpecial Thanks....................xiii
Acknowledgments....................xv
Introduction....................xvii
1. Welcome to Our World....................1
2. Self-Advocacy....................5
3. The Dream....................9
4. The Start....................16
5. The Plan....................21
6. The Challenges....................27
7. The Roundtable....................31
8. Funding....................35
9. Success!....................38
10. Carolina LIFE....................43
11. Clemson LIFE and Coastal Carolina LIFE....................48
12. Winthrop Transition College and College of Charleston REACH....................52
13. Graduation and the Next Steps....................56
14. Reflections....................63