LIFE Learning Is For Everyone

iUniverse, Inc.

Contents

Foreword............................................................................xiSpecial Thanks......................................................................xiiiAcknowledgments.....................................................................xvIntroduction........................................................................xvii1. Welcome to Our World............................................................12. Self-Advocacy...................................................................53. The Dream.......................................................................94. The Start.......................................................................165. The Plan........................................................................216. The Challenges..................................................................277. The Roundtable..................................................................318. Funding.........................................................................359. Success!........................................................................3810. Carolina LIFE...................................................................4311. Clemson LIFE and Coastal Carolina LIFE..........................................4812. Winthrop Transition College and College of Charleston REACH.....................5213. Graduation and the Next Steps...................................................5614. Reflections.....................................................................63

Chapter One

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...