Every day of his life, when we’ve been astute enough to pay attention, Mark has taught us that life’s little victories add up to triumphs. As an infant struggling to make his own muscles lift the weight of his head, he taught Emily to persevere even when the task seems impossible. He showed her that sometimes the greatest rewards are a pat on the back for a job well done and belief in your own inner resolve. His very being taught his big sister that a person’s worth cannot be measured by IQ, class rank, or worldly riches—it’s measured by an unconditional love that many of us never experience, and very few of us are wise enough to truly understand. He taught us to believe.
Jennifer M. Graham
Jennifer M. Graham, mother of four unique kids, has written about the inspiring abilities of individuals with intellectual disabilities for twenty years. Her articles have appeared in national and regional magazines, and the anthology, You Will Dream New Dreams. She is a family educator on transition. Contact her at
[email protected] comcast.net. Emily graduated from James Madison University in 2004 and currently works for an international nonprofit serving children with disabilities. Mark graduated from high school in 2006 and has two part-time jobs in the community. He bakes the best chocolate-chip cookies and believes in the best in everyone.
Silent No More
I am a young man in a verbal world. I am silent. My mouth doesn’t work in the usual way. I have autism. For ten long years, I remained silent in a lonely prison. Locked away in darkness as vast as the universe is big. I expressed myself through negative behavior that no one could understand. My mom tried everything possible to help me break out of my lonely wasteland. I used picture communication systems, which were useless. I tried sign language, which was hopeless. My family resorted to the only real thing that works—praying a lot. My dad is a minister, so our whole church prayed for me.
One day, an amazing angel in the form of a purple-haired lady arrived at my school. She brought a Light writer, which is a special voice output device for silent people. The angel lady explained the device to me, and then took my hand in hers, and my silence changed to golden words of freedom. I am now able to type all my thoughts with the help of my trained support staff. My parents bought me my own device, and I have been a paroled prisoner ever since.
Our story doesn’t end there. Our family has been blessed twice with two silent young men. My brother, Jonathan, has Down syndrome, and he too has been locked up in his own silent, tortured world. Once I started typing my thoughts, the purple angel thought it would free my brother, too, so very recently my brother was released from his silent world. One day, my brother came into my classroom, and we had the opportunity to talk to each other for the first time in our lives. It was so amazing to actually converse with my older brother in real words. The conversation was videotaped as a gift to my parents. My mom and dad watched it a hundred times. It was Christmas time, so we made a Christmas card video of our conversation for our church and friends who had prayed long and hard for us. My life is now filled with endless possibilities.
Jordan
Jordan is a fifth-grader at Hope Technology School in Palo Alto, California (www.hopetechschool.org/index.htm). The school practices inclusion, where typically developing and special-needs students learn together. Jordan enjoys parks, movies, and attending an inclusive E-soccer program (www.e-soccer.info/index.html). He also attends a spiritual resources class for families with special needs.
Jordan and Jonathan talking for the very first time using their Lightwriters presented by Janna Woods, whom the family calls a very special purple-haired angel. The Lightwriter is a designated communication device sold by Assistive Technologies. The device can be viewed at www.assistivetech.com.
Photo reprinted by permission of Gail Ewell. ©2006 Gail Ewell.
Teaching by Example
Tell me and I forget.
Teach me and I learn.
Involve me and I remember.
Benjamin Franklin
“Joyce is two years younger than me,” I told the director, “and four years younger than my other sister. When she was born, the doctors recommended that my parents institutionalize her. They chose to keep her home unless it became too difficult.”
I had thought my interview for admission was finished, but the program director wanted more insight into my character. “Whose influence was most important in making you who you are today?” he asked.
“My sister Joyce,” I answered.
He leaned back in his chair. “Tell me about her.”
I hesitated. It was, well, complicated.
Joyce and I went for walks and liked the same music. We ate cookies and ice cream together. We both had brown hair and blue eyes. But Joyce and I were different. Very different. I was looking for admission into a competitive college major. Joyce was finishing her years as a student in the special-education system. I was developing my independence as a young adult. She remained nonverbal and dependent on others for assistance with daily tasks.
Out in public, I had seen pity, horror, disgust, mockery, and curiosity on the faces of strangers as they watched Joyce and our family. Sometimes people reacted to her in ways that made me mad. I yelled at a woman once because she pulled her children out of a pool as we entered. “My sister hasn’t got any disease your kid is gonna get,” I hollered.
As I got older, I recognized ignorance as the source of people’s stares. It saddened me that people saw only the shell of disability instead of my sister’s humanity. Now I had to explain Joyce to this Ph.D. who held my admission in his hand. I wondered if he would understand how this person with limited abilities could teach me so much. I took a deep breath and continued. “Joyce learned to walk when she was five and feed herself when she was eight. She was toilet-trained by twelve, and then tried to learn other practical things, like setting the table.” I laughed at the memory. “We had to get unbreakable plates and cups. She was so excited to help that she dropped things or put piles of dishes and silverware in the middle of the table.
“That excitement never changed. No matter how many times she was asked to set the table, get ready for a bath, or watch at the window for my dad, she would rush right into the task. She loved being part of the family activities. She tried everything with gusto.
“By Joyce’s example, I learned to enjoy routine tasks. Everyday jobs give my day rhythm and keep me part of a bigger whole. Joyce taught me that things don’t have to be exciting to be fun. It’s all the way you look at it.”
The director pressed his fingertips together while I continued. “Learning to do anything took Joyce a long time. Even a simple thing like learning to brush her hair took months.” I giggled at another memory. “She was taught tooth-brushing and brushing her hair during the same time period. More than once, she got confused and wound up with toothpaste in her hair. But she would try again. Joyce taught me patience and perseverance in spite of multiple failures.” The director’s nod urged me on.
“She showed loyalty and love of family,” I continued. “She would watch at the window for my dad’s car to pull down the street. As soon as it came into view, she’d race to the door, open it, and bring my father inside by the hand. Sometimes she’d even let him get his coat off before she led him to the dinner table.” I smiled at the memory before I continued. “Joyce has an innocent charm. When she sneaks cookies from the cookie jar, the rattling of the ceramic lid gives it away. Doesn’t bother her at all. During hide-and-seek, she hides behind the shower curtain with her shoes sticking out below. She may look like a young adult, but she functions like a young child, trusting, simple, and pure.”
“And that has influenced you?” the director asked. I hesitated as I tried to put these complex thoughts into words. “Joyce enjoys who she is and where she is. Her dignity and worth come from that, not from worldly accomplishments. I find that admirable.”
I was admitted into that program and graduated a few years later as a physical therapist. The lessons Joyce taught influenced not just my
choice of career, but virtually every aspect of my life. She taught simplicity, acceptance, patience, and love by example, touching my life and allowing me to touch hundreds of others. I am forever in her debt.
Jeanne Moran
Jeanne Moran has worked with children with disabilities for most of her twenty-nine-year career as a physical therapist (PT). She teaches pediatrics to PT students in the classroom and in the clinic. In her spare time, she enjoys her family, church, tap dancing, and writing. Unfortunately, her sister Joyce had major surgery at age nineteen and lost most of the skills that had been so hard to gain, including walking and some self-care. She has been living in a long-term care facility in Goshen, New York, since 1980. She enjoys sunshine, car rides, and cookies, and visiting with her family. E-mail Jeanne at
[email protected] Just Tori
He who knows that enough is enough will always have enough.
Lao-tzu
They tell me she’s different, but to me she’s just Tori. She stood there in line in her uniform—blue shorts, white blouse, white ruffled socks, and black shoes. She wore her long brown hair down, and a smile that I can never say “no” to widely spread across her face. She tugged her Care Bear backpack behind her, the one with the wheels. She said to me, “Don’t get me,” and ran off, as she often does, so I chased her for a few minutes, strategically dodging the other students.
A bell rang, and she had to get back in line. Her aide was waiting for her. She marched with the other kindergartners up the steps and into the school. She was so proud to be on her own. I was scared for her, but she was oblivious. Would she make friends? Would the other kids make fun of her? Would she be accepted? They tell me she’s different, but to me she’s just Tori.
The wheels on her backpack remind me of the day she was born. I had never held such a young child. The feeling was unexplainable. After nine months of anticipation, my dream of becoming an aunt had finally come true. For an eleven-year-old, this was the most important thing that had ever happened to me, yet there was a feeling that something was wrong. The ride home in my mother’s minivan was a long one. Nobody spoke. I just watched the wheels out the window as car after car rolled by. My mom tried to explain something to me. She told me that Tori would have a flatter nose bridge, less-defined muscle tone, and that she may never do things other kids would. I cried that night. She was my niece. I was supposed to take her shopping and teach her about boys, but I would never be able to do that. They said she would not walk properly, learn to read, have friends, work for a living, or make much of a life for herself at all. They tell me she’s different, but to me she’s just Tori.
The wheels of her backpack remind me of the tricycles Grandma and Grandpa got her and her younger sister, Gilli, for her fourth birthday. This was the tricycle they told me she would never be able to ride because she was different. She rode it all right. Up and down the block for hours and hours, I watched the wheels of that tricycle turn in a blur of red and white. This past year for their birthdays, the girls got big-girl bikes. I watch the wheels on those bikes turn, too, rolling Tori past places they said she would never even get to.
I spend time almost every week with Tori, and every week she does something new they told us she would never do. Most recently it was writing her first name, counting to ten, and reciting the alphabet. I sit on the phone for hours listening to my sister’s struggle to have Tori in the best educational setting possible. She tells me of the people putting restrictions on what Tori can do because of her disability, and all I want to do is tell her to keep fighting. If we would have listened to them six years ago, who knows what kind of a person Tori would be right now. She would not be the Tori I know and love. They tell me she’s different, but to me she’s just Tori.
Tori gives everybody in the family something to believe in when she runs in the door and shouts out their names with her arms wide open. She has no idea of the ways that I am different from other people, and I am oblivious to the ways she is. They tell me she’s different, they always have, and I’ve never listened. To me, she’s just Tori.
Katherine Schroeder
Katherine Schroeder studies communication arts and journalism as an undergraduate at the University of Wisconsin-Madison. She treasures her boyfriend, family—especially her two nieces, Victoria and Gillian—and the White Sox. Kathi can be reached at
[email protected] Tori loves playing at the park and taking ballet and tap classes where she is the only student who can do the splits. She has grown the last few years, and she continues to surpass expectations placed upon her both at home and at school. And her hugs still give everyone who knows her more to believe in than ever.
Switching Roles
I have a beautiful older sister, Sarina, who just so happens to have Down syndrome. From my earliest years, I was made to believe that I was to take care of her, as she would never be able to care for herself. I remember promising my mother that I would.
When I went off to college at seventeen, Sarina stayed home with my parents. I lived in Nevada, and she lived in Massachusetts. When I turned twenty-one, Sarina wanted to move to Nevada with me, as my parents were not giving her as much independence as she wished, and she was steadily regressing. I thought about this, wondering if I could take care of my sister and finish off college. Wouldn’t she be a lot of work? Could I actually get her all the things she would need and still maintain a life of my own? We decided to try. In all honesty, I was not prepared for all the challenges that faced us. I worked nights, went to school during the day, and slept when I could. In between, I was teaching Sarina the ins and outs of taking care of herself. I took her along to everything—parties, clubs, casinos, vacations— all over the West Coast.
On Halloween 1992, we were going to a nightclub in our costumes. She was Catwoman, and I was a gypsy. A car ran a red light, hitting us head-on. Sarina went through the windshield, and I was a mess—broken knees and hands, and a fractured skull. Sarina sustained no injuries but a scratch on the nose and neck.
When we were discharged from the hospital, I could barely walk and was in constant pain. Sarina had to cook, assist me in the shower, help me get dressed, and do my hair—basically everything I had done for her previously. She was amazing! She had retained all that I had taught her and was able to apply it to real-life situations, not only for herself, but also for another. We had switched roles—I was now being taken care of by my sister.
After five years, I decided to move back to the New England area. Sarina and I climbed Calico Basin in Las Vegas on Christmas day, and when we got to the top I told her that I wanted to go back. She very clearly said to me with a smile, “You go, my sister. I stay here.”
I asked her who would take care of her, and she said, “I take care of myself.” I had little doubt she could, but I just couldn’t leave her alone in Las Vegas, so she gave in and moved back to New England with me. After we got settled, she got her own apartment with twenty hours of assistance and took college classes.
I will never forget how I wondered if I could take care of Sarina. Now I wonder if I could have accomplished all I did if I didn’t have her in my life. She has shaped my career, my personality, my parenting skills, and my life. I love you, my sister.
Gina Favazza-Rowland
Gina Favazza-Rowland is a holistic counselor in Portsmouth, New Hampshire, and a case manager for folks with “different abilities,” not disabilities. She is currently writing a book about Sarina and their lives together. Sarina and Gina each have their own My Space account—feel free to look the mup at www.myspace.com/gypseahealer and www.mspace.com/angelface38!
Big Brother Time-Off
“He’s ruining my life,” Clayton yelled as he ran upstairs to his bedroom and slammed the door. Clayton was talking about his younger brother, Bennett, who resides in the same bedroom. The two boys share not only their room, but also their clothes, toys, friends, and, on occasion, underwear.
As I followed Clayton upstairs, I glanced at the Lego tower he had just finished bu
ilding. It was now in pieces, and in the middle of the destruction was, of course, Bennett, quietly gathering up all the red Lego pieces.
“How is Bennett ruining your life?” I asked Clayton.
“He follows me everywhere. He ruins our games. He growls too loudly in my ear. He won’t let me sleep at night. He breaks my stuff. He’s just ruining my life!”
Bennett entered our family when Clayton was three years old. Clayton didn’t have to share much with his little brother for the first year. But after Bennett’s first birthday, he moved into Clayton’s room. Bennett was still in his crib, and Clayton slept in a bed. Three feet of space separated the two sleeping boys. At night, I could hear Clayton sing songs to his little brother and attempt to tell him stories with his limited speech. In the morning, I would find Clayton’s favorite stuffed animals scattered in the crib with Bennett. Very often, Clayton would be in there, too.
We soon moved to a bigger house with an extra bedroom, but we decided it was best to keep the two boys together. That was also the same month that Bennett turned three and was diagnosed with autism.
The boys continued to play somewhat independently. Bennett was content to play dinosaurs by himself, leaving Clayton to his own friends, and games of Legos and Pokémon. Then, one day, Bennett became Clayton’s unshakable shadow, stuck fast to his back, front, side, and even his head.
That’s when Clayton first declared, “Bennett’s ruining my life!”