Chicken Soup for the Soul: Children with Special Needs (30 page)

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

T
ell 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

H
e 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.