Chicken Soup for the Soul: Children with Special Needs (21 page)

The 1970s rolled in, and I joined the ranks of 54 million people with disabilities, which I learned was the largest minority group in the country. In my early twenties, I was diagnosed with rheumatoid arthritis. I spent five years in and out of hospitals and rehabs having my knees, hips, and shoulders replaced with artificial joints. Nearly a decade had passed since my high-school days, and I was just beginning to understand the empowerment Amanda demonstrated when she surmounted her disability and found the strength to try—just like anyone else.

One of the most important lessons I have learned is that sometimes life’s greatest challenges serve as the stepping stones to a far bigger dream than one can ever imagine— if only we can summon the courage to take that first step. Thirty years from the time this story began, I cofounded Saint Francis of Assisi Service Dog Foundation. The nonprofit organization empowers children and adults with disabilities by providing service dogs that love them unconditionally and help with daily tasks.

I could not have known the foundation would become a success, but thanks to Amanda’s example, I was sure going to try! I’ve often recalled that long-ago march across the school lobby. A crowd of competitive young women witnessed Amanda’s courage that day. How many remember? Were other lives influenced as dramatically as my own?

My only regret is that I never told her even once, “I really love your shoe.” I think she would have been pleased to hear that.

Carol Willoughby

Carol Willoughby
became an advocate for people with disabilities in the early 1970s. In 1996, she cofounded Saint Francis of Assisi Service Dog Foundation in Roanoke, Virginia. “Amanda’s Triumphant March” is an excerpt from her keynote speech presented at the YWCA Women of Achievement awards in 2005. Write to Carol at [email protected] or visit
www.saintfrancisdogs.org
.

The Need for Speed

T
he ideal attitude is to be physically loose and mentally tight.

Arthur Ashe

Every year, our youth group takes a three-day ski trip to White Face Mountain in Lake Placid, New York. But 2006 was special because Rebekah was old enough to attend the trip.

At age twelve, Rebekah has lived more in a lifetime than most. Born prematurely and with cerebral palsy, she has survived many surgeries, and also a battle with leukemia that was finally vanquished by a bone-marrow transplant. Embodied within this child are a strong will and a positive attitude. Somewhere along the way, she captured my spirit.

I invited Rebekah to attend the ski trip.

At first, her parents refused permission. I cannot even begin to imagine the internal struggle for them. This would be the first time that their daughter would be so far away from them. Rebekah’s care would be in the hands of other people. I assured them that I would be there. I researched and talked to the adaptive ski program administrators at White Face Mountain. I arranged for an accessible room. And, finally, seeing Rebekah’s excitement and insistence, they gave in.

I didn’t anticipate the battles that would arise from other sources. Other chaperones for the trip thought I was crazy for inviting her. Her parents were criticized for letting her go. Her grandparents had long discussions with me about all of her needs and how much work she can be. Underneath it all, I sensed a deep, pervasive fear from everyone around me. Her family feared letting her go. The rest feared caring for a child with a disability who used a wheelchair.

All I could see was a young girl, desperately wanting to do something adventurous and on her own. I felt anger and frustration. Why should Rebekah be limited by her body? Why should she be limited by others afraid to take care of her? Why couldn’t anybody else see that she needed this?

Rebekah came anyway, and I knew her parents were walking on pins and needles back home, almost sick with worry.

I will never forget the look on Rebekah’s face when Donald Dew, the adaptive ski instructor, first strapped her into a specially made bi-ski. She glowed with excitement and adventure! Donald was remarkably prepared. He had specially tailored lesson plans for skiers with cerebral palsy.

Rebekah took off! We all stood in amazement as Donald taught her how to manipulate the bi-ski. Later, he told me that she had accomplished in two hours what he had hoped she would accomplish in three days. She was a natural at skiing.

In the middle of the first lesson, Donald asked me to follow Rebekah by holding on to the back of the bi-ski. Unbeknownst to me, she had been planning this moment all morning in her mind. She headed straight down the hill, accelerating to a breakneck speed, dragging me all the way. We were out of control! What if we hit a tree? What about all those promises I made to her grandparents to keep her safe? I started screaming, “Rebekah!
Turn! Turn! TURN!”

With a giggle, she turned and halted our wild slide. “Mrs. Muzzey, I have a need for speed. They’ve been holding me back all morning. Now I finally got it!” By the time Donald got to us, we were both laughing, with tears rolling down our cheeks.

At the end of the lesson, Donald took her to his office and had her call her parents to inform them of her success. “Mom, Dad, I’m having the time of my life! And I think you need to get yourselves in gear and learn to ski, because I love this!” I later found out that this phone call made all the difference to her parents. They were finally able to relax and get rid of the pins and needles.

Every night of the trip, we had group devotions. On the first night, I couldn’t keep quiet about how awesome it was to watch Rebekah ski, about how far she had progressed in one day, and about the crazy trip she had taken with me in tow. I was so proud of her.

The next day, different people wanted to ski with her. One of them was the speaker we had hired. He was trying to explain what happened during that day’s lesson. Instead of someone holding the back of the bi-ski, she had a tether attached from Donald to her bi-ski. But he wasn’t getting the words out in a way that made sense. Rebekah finally piped up to explain, “Look, people. It was like a dog leash. I was on a dog leash!” I know I was holding my gut with pain from laughing.

By the end of the ski trip, almost everyone from our group took some time to come and ski with Rebekah. Everyone was talking about her. In those three short days, that precious soul captured many more spirits with her attitude and wit. No one was afraid of the girl in the wheelchair anymore.

Linda Muzzey

Linda Muzzey
is a stay-at-home mom, a youth director at her church in Delaware, and cofounder of Treasured Girls, a Christian abstinence-education program for girls. Rebekah has been bitten by a “ski bug” and now skis as often as she can. No one stands in her way anymore! She is now in ninth grade and is hoping to obtain her own ski equipment someday. Please contact Linda by e-mail at [email protected] or write P.O. Box 190, Elk Mills, MD 21920.

The Most Famous Kid at School

E
xcellence is the result of caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible.

Howard Schultz

It was that simple birthday party invitation that brought home how far we had traveled. For five years, we had sought answers to why Adam was so inconsistent, so unpredictable. Our bright and beautiful child could charm a stranger as easily as he could haul off and punch another child for a crime only he could perceive. Life with Adam was never balanced; it was a tightrope walk from one good moment to the next. Two bulging file folders— each the size of our Philadelphia phone book—bore testament to the volume of misdiagnoses, unanswered questions, missed workdays, and sleepless nights. Each report represented another series of tests—and another disappointment when the latest expert gave us no more promise of resolution. PPD, SID, ADD, ODD, NVLD—the pages contained an alphabet soup that spelled out our family’s uncertain future.

Finally, in our most trying year (a year filled with increasingly unnerving behaviors, a potential legal battle with our school district, and fallout from our other children), two letters broke the code: TS (Tourette syndrome). A relatively common disorder, so misportrayed in popular culture, we could never have added up all the clues to get this answer. Dr. Anthony Rostain, the genius from Children’s Hospital of Philadelphia, finally made the diagnosis. He explained, “Parents of children with simple problems never make it to me. I get the families like you, who have been seeking answers for years, and whose children defy diagnosis.”

His hourly fee drove home the truth in his words, but by this time, cost and additional debt had become secondary to uncovering what made our child tick (or should we say, tic). A birthday party invitation he received in second grade—the first that Adam had received from a school friend—was to us a sign that we had crossed some invisible divide. Our son was no longer the pariah who had parents calling the principal because they didn’t want their child in the classroom with “that” boy, the one who barked like a dog and tried to yell out closed windows. The little girl who invited Adam to her party is still his close friend and will remain in our hearts forever. So will all the schoolchildren who, empowered by knowledge, compassionately befriended Adam in second grade.

Teaching the children about Adam is at the heart of our story, and perhaps where we should have begun. For us, understanding Adam’s behavior instantly made him easier to accept. Once we learned about Adam’s TS, we quickly discovered that many of his quirky behaviors were tics he could not control. One of the most troublesome, which received unwanted attention at school, was picking his nose and eating the contents. His frequent tantrums, inconsistency, and impulsivity were all manifestations of this syndrome. As politically incorrect as it may be to admit, even as parents, Adam became immeasurably more lovable once it was clear these behaviors were involuntary. In fact, there was immense guilt that we had allowed our son to be disciplined for actions he couldn’t control, and even greater relief that these behaviors were not signs of terrible parenting. Too strict, too lenient, inconsistent—we’d second-guessed ourselves in all directions, as had teachers, caregivers, relatives, friends, and the other parents on the playground.

If knowledge and understanding impacted our feelings about our son so dramatically, they could also change his social stature at school, we reasoned. We just had to find a way to help the other children understand what made Adam tic.

Our angel this time was Laura Umbrell at the Pennsylvania chapter of the Tourette Syndrome Association. Nothing in our experience was new or surprising to Laura, whose job included visiting schools to teach children about TS. She offered to visit Adam’s school to talk to the students and the teachers. We were game, Adam was game, and even his big brother was game.
Who wasn’t?
The school, unfamiliar with TS, was inclined toward ignoring the elephant in the room. Although popular folklore encourages parents to avoid labeling their child by treating developmental disorders as private family matters, it was clear that we had two choices: trust in the other children’s compassion or relegate Adam to a lifetime of being viewed as inexplicably weird. Once we brought the school on board, Laura worked closely with Adam to prepare him for the experience.

When the day finally arrived, he was excited and nervous, and so were we. We had gathered the troops, so Adam had the support of his siblings, grandparents, aunts, uncles, and cousins. We quickly realized he didn’t need us; the assemblies were working just as we’d hoped. That day, Adam stood up in front of five different groups of children (one assembly per grade) and spoke about his TS— how it felt, what it made him do, and how he hoped the children would treat him from then on. All of the adults in the room laughed nervously each time he demonstrated his nose-picking tic. The children laughed, too, but this time they were laughing with Adam. Our vision of our son was forever changed. He spoke with such bravery, reflection, and self-awareness that we (and every other adult in the room) were moved to tears. Adam, on the other hand, was all smiles.

That was the day his world changed. We saw the first inkling of it when his entire class created cards for him, recognizing his courage and labeling him their friend. Our older son was no longer asked by his peers, “Why can’t you control your brother?” Adam stopped hearing, “Eew, you’re gross.” Our phone started ringing with accolades from other parents, eager to tell us how their children came home from school excited to share tales of Adam’s bravery. Playdates even became a two-way street, with calls coming in from Adam’s new friends. Perhaps more life-altering was Adam’s realization that he had the power to change his world and the world around him. Phrases like “I’m the most famous kid at school,” and “I made the world a better place” replaced “Everyone hates me” and “I’m a maniac.” He began making plans for delivering his message beyond the school walls with the belief that he really could make the world a better place by helping children understand one another’s differences.