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Chicken Soup for the Soul Children with Special Needs

Stories of Love and Understanding for Those Who Care for Children with Disabilities

Chicken Soup for the Soul Publishing, LLC

ADJUSTING

    If apples were pears,
    and peaches were plums,
    and the rose had a different name.

    If tigers were bears,
    and fingers were thumbs,
    I'd love you just the same.

Anonymous

Welcome to Holland

[EDITORS' NOTE: Despite, or perhaps because of, its familiarity, we decided the best choice to kick off this book and this chapter is with the well-known, well-loved, and oft-reprinted "Welcome to Holland" by Emily Perl Kingsley.]

Emily writes to Chicken Soup readers: I had no idea, in the beginning, how wide "Welcome to Holland's" applicability would turn out to be. Although originally written in the framework of adjusting to the birth of a child with Down syndrome, "Welcome to Holland" has been reprinted in brochures and flyers for many different associations and conditions. It has been published all over the world in dozens of formats and languages. It's been sewn into patchwork quilts and pillows. It's been made into a stained-glass wall hanging. It's been printed in beautiful calligraphy, illustrated with gorgeous tulips, and distributed as posters, note cards, and bookmarks. The response to "Welcome to Holland" has been incredibly gratifying. I'm always so touched when people write or tell me how much it helped or comforted them. Perhaps the most overwhelming tribute of all was to learn that two children have actually been named in recognition of the hope and support the parents received through "Welcome to Holland": a little girl named Holland Abigail and a little boy named Daniel Holland. Holly's sweet, smiling photo sits in a central place on my own refrigerator. It keeps me humble and grateful.

* * *

I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this ...

When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean 'Holland'? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland, and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills ... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away ... because the loss of that dream is a very, very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley

Emily Perl Kingsley is a mother, lecturer, and professional writer who has received seventeen Emmy awards for writing scripts and songs for Sesame Street. A frequent speaker on the subject of disability rights, she serves on a committee to improve the way people with disabilities are portrayed in the media. She and her son, Jason, who has Down syndrome, have appeared on Today, Good Morning America, and All My Children. Jason and his friend, Mitchell Levitz, are coauthors of Count Us In: Growing Up with Down Syndrome, just published in an updated edition by Harcourt, Inc.

In the Game

The time to be happy is now. The place to be happy is here. The way to be happy is to make others so.

Robert Green Ingersoll

High-school sports. It's about the biggest thing that happens in our town of Verden, population six hundred. And sports are important in our family. Both of our sons were high-school athletes. So I shouldn't have been surprised when Lauren announced she was going out for the girls' basketball team. But I was. At just five feet, one inch tall, our daughter's lack of height wasn't my worry.

She has Down syndrome.

My wife and I never told Lauren that she was different. We treated her like our other children. Same school. Same church camp. Same chores around the house. We didn't want her to feel disabled or different because she had Down syndrome.

"I'm gonna play basketball, Daddy." Lauren ran to meet me when I came in from work. She flew into my arms and lingered long in my embrace, her brown curls tickling my chin. Unlike some sixteen-year-olds, Lauren was outwardly affectionate.

"That's nice, honey," I replied automatically, and patted her shoulder. I figured she meant outside—on the driveway.

Walking into the kitchen, I kissed my wife Laura on the cheek. She looked up from slicing tomatoes and studied me hard. We'd been married more than twenty years, so I usually could tell what she was thinking, but her furrowed brow indicated I'd missed something. Laura spoke slowly, her tone steady. "What Lauren's trying to tell you is that she's joining the girls' high-school basketball team."

Just as my wife's words sunk in, I heard Lauren behind me.

"I'm gonna be a Lady Tiger," she whooped, skipping into the room and throwing her arms in the air. She raced out of the kitchen to one of her favorite activities, watching cartoons on television.

Everything that could happen flashed through my mind. Lauren's reflexes were slow. What if she got injured during practice or trying to keep up with the other players? What if the other girls on the team failed to accept her? What if an insensitive spectator made fun of her? Or what if Lauren's feelings got hurt because she spent most of her time on the bench?

I was eager to discuss Lauren's announcement with my wife that evening, but with four kids popping in and out, the time was never right. What should we do? Parenting seldom had clear-cut answers, and bringing up a child with a disability was an additional challenge.

Hours later, with the kids in bed, I shanghaied Laura at the bathroom sink. "Maybe she won't make the team," I offered.

"Everybody makes the team, Johnny," she whispered, patting her face with a towel. "It's Verden. There are only eleven sophomore girls, and not all of them want to play."

The next afternoon, I parked in front of the school gymnasium. What would I say to the coach? I jingled change in my pocket as I walked through the double doors.

Ponytails flopped as teenaged girls clad in T-shirts and shorts ran across the hardwood floor. Coach Forsythe stood on the other side of the gym.

"Hey, Johnny," Coach called. Before I could speak, he continued, "We're glad Lauren came out for the team."

Whew. "Well, you know we don't expect you to play her in a game, just include her when you can."

I was thankful for the coach's sportsmanlike attitude, but worry rebounded in my stomach. I moved up into the bleachers. Lauren stood alone at the other end of the court, shooting free throws. Short legs and a stout torso hampered her running and jumping ability. And where was her competitive drive? No other girl on the court grinned like Lauren did during a layup. After every shot, Lauren approvingly hollered, "Woo hoo!" She didn't seem to care if she made the basket or not.

Mid-November, the season's first basketball game arrived. I settled into a seat on the second row with the rest of my family.

"Nervous?" Laura whispered as she quieted my fingers from drumming beside her on the bench.

Just then, a low roar erupted. Cheerleaders sprinted on the court, rooting, jumping, and flipping. Their excitement wafted up into the stands. I stood along with the crowd and clapped. Moments later, a train of girls wearing white uniforms with burgundy and gold accents chugged out of the locker room. Last in line was Lauren. Following her teammates, she grabbed a practice ball. Serious game-faces seemed determined to conquer this new season as the Lady Tigers passed balls from player to player. But before Lauren took her warm-up shot, she searched the stands. Spotting us, she tucked the ball under her arm and waved broadly.

The game got off to a good start, but soon Verden was behind. Even after a rally in the second half, I knew the Lady Tigers were destined to lose. I gazed at Lauren's profile from her seat on the bench. She intently followed the movement on the court and reacted to every play. By far the most animated on the team, she slapped her knee when the opponents scored. Her arms flailed in the air each time Verden shot. I even recognized her voice shout "No way!" when a referee made a call against a teammate. Even though she wasn't playing, she looked as if she were having the time of her life.

As the father of a child with special needs, I'd experienced many emotions. But now, I felt admiration for my daughter. Some players might sulk or react negatively to sitting on the sidelines, but not Lauren. Plus, her team was getting beat, yet she still enjoyed the action.

Just less than two minutes were left, and Verden was down by seventeen points. Coach called a time-out. I bent over to ask if the kids wanted anything from the concessions. The announcer's voice boomed over the public-address system. "Number thirty-three, Lauren Wray, in for the Lady Tigers."

I quickly looked to the last seat on the bench. Lauren wasn't there. She stood next to Coach Forsythe at the scorer's table. With a slap on her back, he sent Lauren running onto the court. My heart quadrupled its beat, and I watched wide-eyed. Lauren was in the game.

My wife tugged at my sleeve. "Get up, Johnny."

As I stood, I noticed what was happening. All across the stands, fans were on their feet clapping for Lauren. Our Lauren!

Play resumed. Lauren kept pace with the others fairly well. The visitors scored again. With less than a minute left, the Lady Tigers were near their goal. I saw the point guard shout and flash a signal to her teammates. Then something I consider sacred happened on the hardwood. They passed Lauren the ball. She caught it and dribbled toward the goal. Lauren went in for a layup. Amazingly, the opposing team did not block her. She shot. She scored!

Applause exploded, and the thunderous sounds reverberated off the metal walls of the building. "Lauren, Lauren, Lauren," chanted the cheerleaders.

Instead of reacting to the noisy crowd, my daughter kept her head in the game. The final buzzer sounded. Verden lost by seventeen points.

A few minutes later, Lauren joined us in the stands.

"Did you see? I scored!" Her brown eyes shone as she wiped a bead of sweat from her forehead. "I made a basket!"

For sixteen years, I'd tried hard to shield Lauren and prevent her from feeling like she was different. But watching Lauren in the game, I saw that she really was different—not physically or emotionally, but spiritually. I, nor probably anyone else in that gymnasium, had ever seen a player with so much heart.

My daughter wasn't like everyone else. I wrapped my arms around her and hugged her tight. Lauren was different. And I was glad.

Reverend Johnny Wray As told to Stephanie Welcher Thompson

Stephanie Welcher Thompson is a wife and stay-at-home mom who writes when she is apart from daughter, Micah, age four, and husband, Michael. Her stories have appeared in Guideposts, Angels on Earth, Positive Thinking, Sweet 16, and ten Chicken Soup books. Reach Stephanie at P.O. Box 1502, Edmond, OK 73083 or stephanie@stateofchange.net.

A Message from John

If you judge people, you have no time to love them.

Mother Teresa

Early in my career as a social worker, my boss came into my office and said, "Jo, I have a student who wants to do a rotation with you in the substance-abuse program. He's quadriplegic, but very capable and eager to learn." My first reaction was to say no. This student's disability was one of my greatest fears. I fought off the impulse to protest, however, and replied, "Send him over for an interview so we can get acquainted." John rolled into my office about twenty minutes later.

John and I began our conversation with the usual exchange of information about past experiences and career goals. Then I took a risk. I said, "John, my greatest fear in life is being in an accident that leaves me a quadriplegic. I'm ready for some personal growth if you are willing to teach me. In exchange, I can teach you a lot about working with addicts and alcoholics." John thought about my comment and replied, "No sweat! Most people are very uncomfortable with my physical condition until they get to know me. That's part of what comes with having a physical challenge."

John began his rotation on my unit one week after our initial interview. He amazed me with his creative adaptation to his disability. He typed up assessments and progress notes with a mouth stick, and was active and engaging in group therapy sessions. One day, a new member appeared for his first therapy session. He had paraplegia and was still very angry about his disability. He looked around the room for a scapegoat and quickly targeted John. He began with disparaging comments about John's "obvious" challenges. He taunted John by stating, "You're only half a man. What business do you have leading therapy groups?"

John remained calm during this verbal assault. When the new patient finally fell silent, John said, "When I was first injured, I was very angry, too. I was mad at God, my parents, and myself. Becoming a quadriplegic cost me a football scholarship, my girlfriend, and my ability to meet my own needs without help. As I adjusted to my challenges and worked through my grief and anger, I began to realize I still have a lot going for me ... if I have the courage to take risks. I'm a pretty good therapist, and I hope you will give me a chance to help you." The patient remained sullen, but stayed for the remainder of the session without making any further negative comments.

This angry new patient returned to group week after week, and with John's encouragement and guidance, he began to share his fear, pain, and frustration. John was a powerful role model for this patient. He extended hope and encouragement that he, too, might move forward with life plans by learning to live with his disability.

John was on my rotation for eight weeks. During that time, we worked closely together and began to develop what would later become a lasting friendship. He told me that, at age seventeen, he and a group of friends went swimming at a local rock quarry. He dove in and hit the bottom, breaking his neck. John talked about his struggles to cope with his family's reactions and the drastic changes this single event made in his young life.

When I voiced my own fears about becoming disabled, he made a profound comment. He said, "Jo, a person can be more disabled by their fears than I will ever be by my physical challenges. The most important lesson I learned during my recovery is the difference between a disability and a handicap. A disability means the loss of part or all functional ability of certain parts of one's body. Handicaps are the roadblocks other people, and in some cases our own minds, put in the way of people with disabilities who are trying to live normal lives."

John went on to say, "I can't get out of bed or even roll over without the help of my attendant. Once I am in my chair, I can do almost everything for myself. My life is more challenging, and I have to be creative in solving life's problems. But, as long as I remain hopeful, anything is possible."

John went on to receive a master's degree in social work. He used his talents by working at the Center for Independent Living, counseling others with significant physical disabilities.

John taught me a lot during the course of our affiliation. The true significance of his gift was not realized until the birth of my youngest son, born thirteen weeks premature. Soon after his birth, Vincent was diagnosed with an eye condition called retinopathy of prematurity. This condition can result in total blindness. Four eye surgeries later, the doctor told us, "We were able to save some of Vincent's central vision, but he is still legally blind." This was a devastating blow to our family.

When Vincent was two, we noticed that he didn't seem to respond when we spoke to him. A trip to the audiologist revealed that he had severe hearing loss in both ears. Vincent also has a chronic lung disease, a reflux disorder, and several other physical conditions that greatly delayed his development. With the discovery of each disability, I grieved as any parent would. Then I thought about John and what he taught me about the difference between being disabled and handicapped. I vowed not to become a handicap to my son.

Vincent has limitations, but compensates well. He can run, ride a bicycle, and swim like a fish. He is a high-spirited child with a wonderful sense of humor. His love of life gives him the determination to laugh at himself and keep on trying. The hope John instilled in me the day he shared his own experience has been a source of strength for me each time Vincent faces new challenges. This hope keeps me focused on Vincent's "other abilities" rather than his disabilities. I am constantly amazed by his tenacity and determination, but, then, I had John for a teacher, and he taught me well.

Jo Clancy

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Excerpted from Chicken Soup for the Soul Children with Special Needs by Jack Canfield, Mark Victor Hansen, Heather McNamara, Karen Simmons. Copyright © 2012 Chicken Soup for the Soul Publishing, LLC. Excerpted by permission of Chicken Soup for the Soul Publishing, LLC.
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