“Watch me,” I replied. “Nobody tells me I can’t do something.” I started toward the column.
“She’s spunky. I like that,” another teacher said, following me, cheering all the way, just as Dad would have.
Pam Johnson
Pam Johnson is a freelance writer, published in numerous magazines. Although she is legally blind and hearing impaired, she enjoys life. She loves exercising, going to the beach, playing guitar, and is a volunteer counselor. She has seven children and eight grandchildren. Pam recently married and currently goes by the name Pam Bostwick. Contact her at
[email protected].
Reprinted by permission of Gustavo Rodriguez. ©2007 Gustavo Rodriguez.
The Most Important Words
Wise sayings often fall on barren ground, but a kind word is never thrown away.
Arthur Helps
“There’s nothing wrong with you!” These were the words that my Nana would gruffly say whenever the topic of my autism would come up, and probably the most important words I would ever hear as a child and then as a teenager. Out of all the members of my family, and every adult, teenager, and child I would ever come across, I was closest to my grandmother because she understood something that the others did not: There was nothing “wrong” with me. I was different, and that was all. She did not treat me any differently from my brother or cousins. She did not focus on what was so “terribly wrong” with me. And she was never any more impressed with my accomplishments than she would have been if my brother, cousins, or anyone else had accomplished them. Nana had faith in me and what I could do.
Of course, Nana knew that I had painful digestive problems, headaches, and extreme sensitivity to smell, touch, and hearing. When I got overloaded with any of that, I would act strangely to try and calm myself. However, she had high blood pressure, and had had a heart attack and two strokes in the past, so she just saw my problems as medical things that I would have to deal with just like she dealt with hers.
I am now thirty years old. I am married, work in a high-paying job in the information technology (IT) industry, and am an area governor in Toastmasters. I graduated from college with a 4.0 GPA, I went to a regular school, and I never had special education (although it was hard for me). I drive a new car and conduct public speeches to professionals and parents about autism from a different perspective. Of course, I still have my medical problems, get overloaded easily, have digestive problems, and really don’t like going to large social events. That will never change.
I truly believe that the messages we hear as children really shape who we become as adults. Many of us spend so much of our lives hearing what is so terribly wrong with us that we start to believe that we are terribly wrong! The words of trusted adults have incredible power over children . . . even those who have autism. The negative messages drive many teens and adults with autism to depression, suicidal thoughts, and so on. The positive ones help them grow up to become productive and happy adults. I am a productive and mostly happy adult because an important person in my life had faith in me and gave me the right message while I was growing up . . . even if it was said in a gruff tone. To my dying day, I will be grateful to my late grandmother for telling me that there is nothing “wrong” with me!
Daria J. Skibington-Roffel
Daria J. Skibington-Roffel is a writer, public speaker, artist, and activist focusing on respect, understanding, and acceptance for children and adults with autism. She works as an IT professional and is pursuing a bachelor’s degree in psychology. Daria was diagnosed with autism at the age of two. Please e-mail her at
[email protected].
Something in Football
For life to be a dream come true, it is critical to know who is dreaming.
Jay Robb
“Hey, Seth! Gimme five!” The huge hulk of a man clothed in bright shades of yellow and grass-colored green, complete with helmet, shoulder pads, and leg pads, hollers to another, much smaller, young man, and hands slap together as they pass. Smiles flash, and it’s obvious these two like each other.
The University of Oregon football team, coached by Mike Bellotti, is getting ready for the upcoming “Civil War” game played each year against neighboring Oregon State University’s Beavers team.
This year, like every other year, the intensity of competition will be palpable as the two teams vie for position as Oregon’s number-one winning team. And Seth will be right there as always—constant supporter, loyal fan, and much-loved colleague. Probably no one would look at Seth and say, “Now there’s a kid who’s born to play football.”
Not quite as tall as his brother or sister, Seth’s Down syndrome, a genetic disorder that affects approximately one in every eight hundred to one thousand births, may have played a role in his shorter stature.
As a child, the tow-headed boy with sparkling blue eyes knew how to attract friends with his great sense of humor. He knew how to dance and wasn’t shy about joining in wherever there was music and a beat. But more than that, Seth knew a lot about football. Being part of a family that attended every one of the Oregon Duck games, Seth’s knowledge of football grew along with his interest.
Challenges would come, as they do for everyone, but never was he deterred when it came to learning everything he could about his favorite sport. After high-school graduation, Seth enrolled in the Community Living Program, where life skills are taught and practiced before young adults actually move out on their own. “Do you have an idea what he might have an interest in doing, like something he might be good at?” an instructor asked Seth’s mom one afternoon.
“Yes,” she answered without hesitation. “Something in football.”
Her quick smile hinted at the reality that that might not be the easiest thing to bring to fruition. But her son had his dreams. She knew her oldest son’s life passion. He longed to be a part of football. While attending one of his sister’s basketball games with his family, Seth walked over and introduced himself to one of the parents who was watching the game as well. It was Mike Bellotti, the head coach for the Oregon Ducks football team.
Days later, Mr. Bellotti would ask Seth’s parents if they thought he might like to assist the Ducks. Neither would have to wonder about the answer. It has been six years since Seth started helping with the University of Oregon Ducks as assistant to the equipment manager. Beginning in August, when the team practices twice a day, Seth is right there, and he knows every teammate’s name and position. He knows the rules of the game and all the signals, easily keeping up with the referee in making the calls. Though running with the ball to score a touchdown or jumping out to block the opposition may never be in his future, Seth is as much a part of the Ducks as his dreams had anticipated—and more.
“Have good offense, good defense, protect the quarterback. Right here! Right now!” Seth regularly speaks to the team with words of encouragement. They are as blessed to have him on their team as he is to be there. Though it may have turned out very differently for this persevering young man, his quiet confidence proved him a winner, far exceeding the expectations of those who might have imagined a limit to his abilities.
Seth is living his dream. He loves his work and his life, and when he returns to his well-kept one-bedroom apartment, he enjoys the satisfaction of being on his own and the pride of accomplishment. Seth’s parents are empty nesters now, and his siblings are also grown and out on their own. Joel is away at college, and Paige is at the University of Oregon. And, of course, so is Seth. During the season, he can be found where he is most at home, where he thrives, doing what he was born to do—“something in football.”
Lauri Khodabandehloo
Lauri Khodabandehloo just completed her book, Sunshine in My Soul, about the trials, heartache, joys, and blessings of raising a child with autism. She has a passion for speaking on autism and God’s grace, and is a member of SAIL Housing, a parent-driven organization that supports independent living for those with developmental disabilities. She can be reached at
[email protected]. Seth con
tinues to work with the team at the University of Oregon and has been living on his own in his loft apartment since graduation from the Life Skills Community Living Program. He is busy with the routine of life but makes time to spend with friends and family, and keeps them updated and informed with his awesome knowledge of the game of football.
A Revelation
Life’s under no obligation to give us what we expect.
Margaret Mitchell
“There’s an arrowin your butt,” he exclaimed to the afternoon sun. Brushing the damp brown hair out of my eyes, I was sure I was going to die soon if I didn’t get to my emergency inhaler. Maybe I had already died and gone to hell. The raging Kentucky summer glared at me from the blacktop of our uphill driveway. The 95-degree heat was nearly matched by the humidity, which made the air thick enough to slice. I panted, jogging beside him as the knobby tires of Zayne’s bicycle murmured encouragement to my well-worn sneakers. I groaned to myself, Why did I choose the end of June to teach Zayne to ride a bicycle without training wheels?
From the moment he was born, I knew Zayne was different. At first I thought he was rocket scientist different. You know, the kind of different that helps a person change the whole world at the blink of an eye. After all, Zayne immediately memorized almost everything he saw and heard, and besides, he was my son. But sometime after the eighteen-month mark, Zayne began to speak less and less. Every day he traveled a little further into his own mind, until eventually he communicated only in basic sign language and certain random echolalic phrases from his favorite television shows and movies. It was during this time that I slowly began to realize that the kind of difference Zayne possessed was the kind that changed the world one person at a time.
This realization blanketed my being even before Zayne was diagnosed with PDD-NOS, an autism spectrum disorder that affects Zayne’s ability to reason, communicate, and understand the world at large. As Zayne grew older, he began to have emotionally devastating meltdowns. This made even the simple things like getting him out of bed difficult, and making Zayne do things for himself was sometimes more than I could handle. How do you make a child pick out his school clothes when he is screaming obscenities and flailing his limbs wildly at an invisible offender? It was just easier to do things for Zayne. I was only dimly aware at the time that as he retreated from everyday life, I advanced, and my advancement was smothering him. I became like kudzu, growing, reaching, tightening my hold on Zayne’s life. Success for me became simple: survival. But I later learned that while a good grip does lend support, it also restricts movement and growth.
Sweat dripped from my neck, arms, back, and legs. With every exhalation, I expelled a wheeze, but still I continued to jog beside him with one hand on the right side of the handlebars and one hand on the back of the black bicycle seat. I couldn’t give up now. If he could learn to do this, there was still hope. Other kids learn to do this when they’re six. Zayne’s nine. He has to do this, I thought. All of my dreams for him—learning to drive, having a job, making a friend— materialized in my mind. If he could learn to ride, he could learn to live. He could learn to love. I could learn to let go.
Eight laps we ran around the course devised for safety rather than ease of use. Down the grassy hill, wide left turn around the pear tree near the road, up the paved driveway hill, wide left turn into the grass. We were like an awkward comet revolving our way in and out of the solar system. Nine, ten, eleven. Zayne, in his huge red and white striped riding helmet still wobbled, but he grew steadier with each lap. Sweat ran down my arm, causing my hand to slip off the lime green handlebar. I let go. The gleaming silver and green bike was a knife that sliced a new clean line through the grass, dragging me behind as I clutched at the seat with my left hand. In the confusion I had to remind my legs to keep running.
“There’s an arrow in your butt,” Zayne crowed again with delight. I wished that he would say more than just lines from the movie Shrek. I wished he could tell me his fears, his thoughts, his dreams. He was so close. He needed this, and what was more, I needed to know he could do this. We greeted the sweltering pavement again, and this time Zayne surprised me with a line from Finding Nemo that he had not said in a while: “It’s time to let go.” Obediently, I loosened my grip on the back of the seat. When he pedaled up the driveway, I was three inches off the ground. All of my sweat, heartache, and uncertainties melted into a reflection pool at my feet. I realized that, just like anyone else, Zayne really is the master of his fate, and although I will doggedly jog beside him for as long as he needs me, the day eventually will come when he will choose to pedal on, leaving me behind to rejoice in his wake.
Lisa Logsdon
Lisa Logsdon received her master’s degree in education from Western Kentucky University in 2005 and her bachelor of science from the University of the Cumberlands in 1995. She teaches English and media to high-school students in Southern Kentucky. Zayne continues to make remarkable progress, both at school and at home. His hobbies include therapeutic horseback riding, drawing, and collecting toy cars. He rides his bike, without assistance, often.
“You made this on February 21,
and I really hated it.”
Reprinted by permission of Andrew Toos and Cartoon Resources. ©2005 Cartoon Resources.
Bearing Gifts
Success is almost totally dependent upon drive and persistence. The extra energy required to make another effort or try another approach is the secret of winning.
Denis Waitley
Christmas with my brother Ken was always a magical time. He never got “too cool” to be excited over the holidays the way the rest of us did. Ken was born smack in the middle of my parents’ twelve kids. He was born a month early in an era when pediatric intensive care units weren’t what they are today. Halfway through the delivery, the doctors realized the umbilical cord was wrapped around Ken’s throat, cutting off the oxygen to his brain. By the time he was in the doctor’s hands, it had been cut off long enough to leave him with cerebral palsy, mild retardation, and profound deafness. But God is good, and he more than compensated for Ken’s disabilities by lavishing on him a sparkling personality, a gusto for life, a childlike faith, and a magnetic smile that drew people to him.
Because my brother Mark was born less than a year after Ken, and my sister, Gail, had been born ten months before, babying Ken was not an option. He was part of the gang from day one, and although he didn’t walk until he was twelve, he never had trouble keeping up with the rest of us, or the passel of neighborhood kids and cousins who hung around our house.
In the hospital, the doctors had advised my parents not to see Ken, to put him in a “special home” and forget they’d had him. They predicted he’d never walk or talk, never feed himself, and wouldn’t live past his tenth birthday. Ken was seven by the time I was born, and I’m glad the doctors never told him any of the above. The Ken I knew was lean and taut, feisty and impish, and ate anything that didn’t eat him first. He loved a party, being the center of attention, and everything to do with Christmas.
One of my favorite Christmas memories was a year when our grandparents sent us a new swing set. From first glance, Ken was fascinated with the slide. He spent the holidays on the ground offering a blow-by-blow commentary as the rest of us slid down. He’d squeal with delight as we started down the slide, throw his head back, and laugh when we landed with a splat at his feet, then chase us on all fours trying to grab us and tickle us before we could crawl back up the ladder again. He never tried to traverse the ladder himself, though. His scrawny, twisted legs just didn’t work like that.
The day the rest of us started back to school, Mama knew what she had to do. She bundled up Ken, took him out to the backyard, pointed him toward the ladder, and began to pray, “Okay, Lord, Ken wants to go down the slide. I’m gonna need all the help I can get to let him try.” Years later, she told me how hard it was watching him climb and fall, climb and fall again and again. He tore both knees out of his pants, cut one elbow, and blo
odied his forehead, and one particularly bad tumble left him rocking on the lawn crying and holding a knot on the back of his head.
The neighbor to the back of us came to the fence and yelled at my mama. “What kind of woman are you? Get that baby off that ladder!” Mama told her as nicely as she could that if it bothered her, she’d have to close her curtains and stop watching. Ken had decided he was going down the slide, and down the slide he would go, no matter how long it took him.
By the time the rest of us got home from school, Ken was black and blue and smiling from ear to ear. Not only could he get up and down the slide with lightning speed, but heaven help any kid who got in his way.
That was a generous gift my grandparents sent us that year. I’m sure it set them back a bit. But the real gift came from my mom, who loved my brother Ken enough to watch him struggle, to pray for the courage not to interfere, knowing how important it was for Ken to do things on his own.
That was almost fifty years ago. I wish I knew where those doctors are now. They were so ready to tell us all my brother would never do. Obviously, they didn’t know the God we knew. What would they say if they could see Ken now at age fifty-five, living independently and holding down a job? They didn’t know back then that God had a much bigger plan for my brother, and they didn’t know the mama who loved him enough and trusted God enough to give him the best Christmas present he’d ever receive.