Chicken Soup for the Soul: Children with Special Needs (35 page)

This just shows that a label is a label, just like a rose is a rose. Another specialist could come up with a different diagnosis, or insist that Asperger’s is on the autistic spectrum. I really don’t care what the label says. He is and always will be my Jack. I think of it like a label on a shirt, offering directions to best take care of the child. And he will always have my own personal label attached to him: cherished son. Contents: 100 percent pure joy. Directions: love deeply on the gentle cycle.

Lisa Scott Macdonough

Lisa Scott
is a TV news anchor in Buffalo, New York, and a freelance writer. Jack is flourishing in first grade in mainstream school without an aide and doesn’t even meet the criteria for special education. He does receive some supports, such as occupational therapy, physical therapy, and speech therapy. His parents expect him to live a full, happy life. Contact Lisa or read more of her work at
ReadLisaScott.com
. Lisa is working on a novel with a young character who has undiagnosed sensory processing disorder.

8
FOSTERING
INDEPENDENCE

T
here are some aspects of a person’s life that we have no right to compromise. We cannot negotiate the size of an institution.
No one should live in one. We cannot debate who should get an inclusive education.
Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must.

Lou Brown

Joey’s Gold Medal

R
eal power comes by empowering others.

Denis Waitley

In 1989, I had just graduated from high school, and it was my first summer working with the Special Olympics. I had volunteered that spring and was assigned as a trainer for a young man named Joey. Joey was eighteen years old, had Down syndrome, and was a delight to be with. Joey wore a perpetual smile and was quick to laugh and give a big thumbs-up to everyone he saw, peering at the world through his thick, Coke-bottle glasses, which he polished habitually. Standing just less than five feet tall, Joey was everyone’s friend. His race was the long quarter-mile run, the full lap around the track. I would stand at the finish line and call out as he rounded the final corner, “What are we going to do, Joey?”

“We’re gonna win!” he would shout back. We hit the track every Saturday for the six weeks preceding the race, and Joey’s time slowly improved until he was making the finish line in just less than three minutes. We would follow up our practice with a trip to the local burger joint, where Joey would tell the waitress, every week, that he couldn’t have French fries because he was in training. He was going to win a gold medal, and he wanted a salad.

As summer neared, the girls at the restaurant would all come over to ask him what his best time was and how practice went. They patted him on the back and wished him luck. Joey basked in their adoration. The day of the race finally came, and I picked up Joey in my van. His mother kissed him good-bye, telling him she would be there for the race. We loaded up his gym bag and drove to a local high school where the Olympics would be held. Joey was so wound up he could hardly sit in his seat, his hands drumming constantly on his knees, stopping only to polish and repolish his glasses. We arrived, parked, and signed in, getting our race assignment and number.

It was then, on our way to the sidelines, that I realized that something was wrong. “Joey,” I asked, “where are your glasses?”

Joey stared back at me, blinking owlishly. “I dunno . . .” I got Joey started on his stretching and went back to search the van. Top to bottom, end to end, no glasses. All I could think was that he must have set them on the dashboard, and they were blown out the open window. I walked back through the parking lot, but there was no sign of the missing glasses.

When I returned to the field, Joey had finished stretching and was jogging in place, keeping his legs warm. Knowing that Joey was nearly blind without his glasses, my heart was breaking as I sat him down on the bench. “Joey, I don’t know if you’re going to be able to race today,” I started. Joey was quiet as his chin began to tremble. “I just don’t think it’s safe,” I continued. “Without your glasses, you could get hurt.” His eyes began to fill.

“But we’re gonna win,” he said, his voice cracking. “I’m going to win a medal.”

I sat there for a moment, struggling with my own disappointment and Joey’s. Then a thought struck me. “Come with me, Joey.” We walked over to the track, and I stood him in his lane. I pointed to the white line on his right. “Can you see that line?”

Joey peered at his feet. “Yes.”

I pointed to the line on his left. “How about that one?”

“Yes.”

“Okay,” I said. “Now this is important, Joey. If you run today, you have to keep your eyes on those two lines. You have to watch very carefully, and not cross out of them. Can you do that?”

“Yes.”

Still unsure, but out of options, I led Joey back to the starting area. He walked haltingly, squinting his eyes, one hand slightly out in front of him. “Is Mom here?” he asked. I scanned the bleachers until I found her and waved. She waved back. “Yeah,” I said. “She’s up in the stands watching.” Joey waved in the wrong direction.

The other coaches and I got our runners into their lanes, and then headed toward the finish line to cheer them on. The starting gun fired, and they were off! Joey was doing well, holding steady in second place until they rounded the first corner. Another boy swerved from his lane into Joey’s, and Joey lost sight of his white line. I winced as I watched one sneakered foot catch the back of the opposite leg and send him sprawling onto the tarmac. Joey had fallen before, and he seemed okay this time. He scrambled to his feet and, pausing to squint at the track, he found his lines and started off again, limping slightly on his left foot. The rest of the boys had passed him, and he was about a quarter track behind. He ran doggedly, arms pumping at his sides, around the far corner and into the straightaway. Just as he was starting to gain on the last boy, his foot slipped again and he dropped to the track, rolling onto his side and groping blindly around him for balance. I groaned and started forward, but Joey rose to his knees again. He was crying now and almost started back the wrong way, but he turned at the direction of the pointing crowd. Now he was limping heavily, worn out, his arms hanging limply. Twenty feet from the finish line, he fell again. It was too much, and I was going to stop it, but as I stepped out onto the track to lead Joey to the sidelines, I felt a hand on my arm.

I turned to look and found Joey’s mother, tears in her eyes, standing beside me. “He’ll be okay,” she said. “Let him finish.” Then she stepped past me and walked over to stand next to the finish line. “Joey,” she called over the crowd. “It’s Mom. Can you hear me?” Joey’s sweaty, tearstained face came up, searching blindly through a sea of blurred faces. “Joey,” she called, “come this way, honey.” I watched Joey rise to his feet for the third time. His palms and elbow were scraped, and blood trickled from his knees, but he began hobbling toward the finish line once more. “This way, Joey,” his mother called again, and Joey’s face broke like the sun through the clouds, a bright wide smile on his face, as he crossed the finish line and fell into his mother’s arms. As I ran toward them, through the roaring applause of the crowd, I could hear Joey telling his mother again and again, “I won, Mom! Did you see me win? I won!” Joey took home two gold medals that day, one for his race and one for best spirit. He earned them both.

Perry P. Perkins

Christian novelist
Perry P. Perkins
was born and raised in Oregon. Perry dedicates this story to the memory of Joey, who passed in 2001. Perry’s writing includes
Just Past Oysterville, Shoal water Voices,
and
The Light at the End of the Tunnel.
Perry is a student of the Jerry B. Jenkins Christian Writer’s Guild and a frequent contributor to the Chicken Soup for the Soul anthologies. Perry’s work can be found online at
www.perryperkinsbooks.com
.

A Simple Question

A
ny path is only a path, and there is no affront, to oneself or to others, in dropping it if that is what your heart tells you to do.

Carlos Castaneda,
The Teachings of Don Juan

Our family had lived on the same friendly street for over seven years—our daughter Anna’s whole life. From the beginning, the neighborhood kids were sincere and open in their desire for information. Their questions about Anna were tough to hear at first, but I learned how to answer them. Books about disabilities provided the words for me; I used simple terms to explain complex realities like “cerebral palsy,” “vision impairment,” and the other challenges in Anna’s life. I considered myself a capable veteran in responding to questions like “Isn’t Anna too young to wear glasses?” “Why can’t she talk?” and “When she grows up, will she still need a wheelchair?”

But Alexa, an energetic eight-year-old neighbor girl, had asked a question that was of an entirely different sort. I sensed immediately that it would affect me for years to come, but I wasn’t sure exactly how. All I knew was that I wouldn’t find the answer to this one on my shelf of books on disabilities. Standing by Anna’s side, Alexa looked straight at me and said, “Bonnie, what does Anna get for her allowance?”

I tried to think of an acceptable response, but my silence gave me away. The truth was it had never occurred to me to give Anna an allowance! Alexa looked disapprovingly
at me.

“Seven-year-old kids around here usually get a dollar a week,” she said evenly.

Anna squealed. Now both girls were watching me intently.

I had always answered children’s questions honestly, and I knew this was no time to do otherwise. “Alexa,” I began, “I probably didn’t think of it because Anna doesn’t really have chores, like other kids do.”

I felt sad, kneeled down, and stroked Anna’s small hands. Wide-eyed and smiling, she touched my face. As always, her patience and tenderness comforted me.

My love for my daughter was so strong that I would do anything for her. Instead of resuming my career after she was born, I spent my days at home with her, applying early-intervention strategies given to us by specialists and therapists assigned to our family. My husband and I desperately wanted to give her a good start at living with multiple disabilities. Time was of the essence.

Alexa’s question about allowance money stunned me because it had nothing to do with Anna’s special needs. Why would I use Anna’s valuable therapy time to think about something as ordinary as an allowance? Clearly, Alexa saw Anna’s life differently than I did. She exclaimed, “Anna does TOO do chores. She’s learning to carry her own dish to the table. She is trying to use her communication board to ask for things. She does exercises every single day!”

Anna was beaming as she listened to the unfolding drama.

How could I disagree?
Alexa was so very right. Her insistence that Anna receive an allowance for doing her chores, just like the other kids, was opening my eyes as well as my heart. “Okay!” I said with a nod. “We’ll start today.”

Kelly, another young neighbor, peered in through the screen door to see what was going on. In no time, the door flew open, and the two girls ran off to look for something to hold Anna’s money, because, of course, a weekly allowance needs to be saved in a proper bank.

As Alexa and Kelly dashed out of the house and across the damp front lawn, a lovely breeze of spring air sailed into the living room. Anna’s gaze followed the girls, and I closed my eyes in gratitude for this moment of discovery we were sharing. I began to wonder,
If I was feeling overwhelmed by all the special work Anna had to do, how was she feeling? And, on top of everything, without even an allowance to show for it!

Anna reached toward the doorway, so I wheeled her outside to wait for her friends. Alexa and Kelly soon reappeared with a can and lid, and a small notebook and pen. Alexa made a wide cut in the plastic lid so Anna could easily drop her coins into the slot. The notebook was to keep track of whether I remembered to pay Anna every single week.

Each Friday, the girls helped Anna perform the ritual in which she proudly put her very own allowance in her very own bank. Other exquisitely ordinary activities ensued, much to Anna’s enduring delight. The three girls counted allowance money together and entered sums carefully in the notebook. They examined magazines and catalogs for toys, and later, clothes, that Anna might want to buy. They cut out Anna’s chosen pictures and made lists of items to track down at the store.