A son with Down syndrome inspires his mother
to become a groundbreaking professor in special education

By TERESA KILLIAN TATE

When Billy Schulz asked, “Mom, how long you know me?” his mother had to think. “Of course, I’ve known him all of his life, but it seems as if I’ve known him all of mine,” said Jane B. Schulz, a retired professor of special education from Western Carolina University and pioneer in the field. “So much of who I am came from knowing him.”

Jane was a working mother of four in the 1960s when she was told her son Billy, who has Down syndrome, was not eligible to start school until he was 8, although his sister could enroll at age 5. “That made no sense to me, so I decided to teach,” said Jane. Without a college degree, she was hired to teach kindergarten at a school that allowed Billy to come to work with her. In a neighboring kindergarten class, Billy had fun and learned such skills as taking turns, waiting in line and going to the bathroom during scheduled times. The experience was one of their first in what would become known as “mainstreaming” – integrating a child with special needs into a conventional classroom, and the inclusive concept would become Jane’s mission. “We were pioneers together,” said Jane, co-author of a landmark book in the field titled “Mainstreaming Exceptional Students: A Guide for Classroom Teachers.” “All of us have to take chances, and it is scary. But you have to be proactive. It starts with attitude.”

On A Mission

After discovering she loved teaching, Jane went back to school herself so she could work in special education. As she earned bachelor’s, master’s and doctoral degrees, she gained experience not only with teaching but also with conducting intelligence assessments and research, and coordinating special education programs. At times, she was surprised to realize she knew more than her professors. One said there were no girls with Down syndrome; Jane knew several who were in school with Billy. Another said children with mental disabilities had no creativity; Jane came home to find Billy riding a horse made from an upside-down chair and blanket.

At Western Carolina, Jane helped implement Special Olympics on campus. One year after joining the faculty, she was appointed to develop a statewide program to train teachers of students who had mental disabilities and were assessed as “trainable.” In addition to co-authoring the book about mainstreaming, which is now in its fourth edition, Jane was co-editor of “Bridging the Family-Professional Gap” and author of “Parents and Professionals in Special Education.” “Jane brought a level of authenticity, quality, and sensitivity that is rare. Her students adored her, as I do,” said Ann Turnbull, a distinguished professor of special education at the University of Kansas and director of the Beach Center on Disability. “I am confident that the legacy she left continues to not just survive but thrive.” Jane Schulz’s latest book, “Grown Man Now,” is a memoir that explores the challenges and the victories the family faced, how they took care of Billy and how Billy has gone on to take care of them. She continues writing today with weekly installments on her blog, grownmannow.blogspot.com.

Taking Chances

After Billy completed kindergarten, Jane sought the highest quality educational settings for him – classes in which students who had disabilities engaged in learning activities more than they played independently or watched TV. In one case, the quest led Billy to become the first white student at Talbotton Road Junior High School in Columbus, Ga., where he had one of his best school years. While there, Billy’s presentation about poisonous plants enabled him to join his siblings at a science fair, and he won a prize in an art contest – a feat that landed his picture in the paper.

Today, Billy can read functionally – the weather report, TV listings and words such as “danger” and “exit” – and compensates for academic deficiencies with strong adaptive and social skills. Once when Billy went to a restaurant that had the bathrooms labeled “pointers” and “setters” instead of “men” and “women,” he watched to see who came out to know which bathroom to use. On another occasion, Billy asked a woman at church if he could take her home with him. “She, going along with the joke, responded, ‘You’ll have to ask my husband.’ Without missing a beat, Billy said, ‘He’s not my type,’” wrote Jane in “Grown Man Now.”

As Billy’s siblings went off to college, he longed for independence too, and the Schulz family explored job and housing opportunities. Unsuccessful attempts included a job at a lumberyard where a co-worker threatened Billy and a job in fast food where he was yelled at to work faster. At one point, he was excited about an opportunity in which he would live in a group home, but the situation deteriorated into Billy on his own in a substandard apartment. “Living alone is supposed to be a learning experience for Billy,” wrote Jane in a letter to his landlord. “He has learned many things: how to eat and gain weight without a stove; how to fight roaches and live in inadequate housing; how to live with the fact that there are unscrupulous people who will take advantage of people with disabilities.”

Finding a Niche

Months later, Billy moved into a trailer close enough to his parents for safety and companionship and far enough for independence. He was excited to land a job at WCU’s Hunter Library, processing books and inserting security strips into publications – a job he held for 21 years. Hunter Library staff members Shirley Beck, Mary Hill and Sharon McLaurin still miss him. They could hear him sing and recite poetry as he worked at his desk, rhymes such as, “Roses are red, violets are blue, Sharon is so sweet and Mary is too.” “We always got such a kick out of that,” said Hill. Another time, when he was on a diet, he explained to Beck why he had to get treats from the vending machine to supplement his Slim-Fast diet. “He looked at me solemnly and said, ‘Well I have to have something to chew,’” said Beck. And every day, no matter how they were feeling, he told them how pretty they looked.

McLaurin said it was hard to have a bad day with Billy working by them. “He honestly loves the people in the library, and we felt that love and still do,” said McLaurin. “When he comes to visit now, many times he will hide and jump out to surprise me. I just love this. We catch up on what he’s been doing. This last time he visited, he said his mom gave him a new tie for Easter, and he wore it to church. He tells us about his job, and what his family has been doing.”

Inspiring Others

After Jane retired from full-time teaching at WCU, and after her husband’s death, she, Billy and her mother moved together to Kingsport, Tenn., to be closer to Billy’s sister, Mary, and her family. Billy works three days a week at Food City bagging groceries and is active in his church. Billy and Jane return to WCU on occasion and have presented together at the invitation of David Westling, the WCU Adelaide Worth Daniels Distinguished Professor of Special Education.

“Jane was very committed to the idea that Billy would have a very normal and typical family life,” said Westling. “As much as she could provide that and make sure that happened, she did. I want to make sure the students I have who are going to be teachers can see that if they and others do really good work, and work well with families and support families, that this is the kind of outcome that is possible.”

Before a packed classroom, Billy clicked from slide to slide, from images of him as a toddler pulling toilet paper off the roll to him dressed up for prom. “My place is downstairs, and my mom’s upstairs,” said Billy of the apartment in his mother’s home. “Every Thursday, I take the trash up driveway,” he says of one of his chores. When Jane talked about a good friend of Billy’s who developed Alzheimer’s, Billy said he was sad that his friend Steve doesn’t know him anymore. “It breaks my heart,” he said. “It hurts me a lot.”

Perrie Ramey, a WCU student in Westling’s class, said Billy inspired her. She asked Jane how to advocate for her own grandson – a 4-year-old who has a disability. “She said, ‘You’ll know you are doing your job when the teachers get uneasy when they see you coming,’” said Ramey. “The system is so intimidating, and hearing her story encouraged me to move forward even at the age of 55 to get my master’s degree in special education. I want to be part of creating a better educational system for all children and their families.”

Jane Schulz’s son Billy, who has Down
syndrome, inspired her memoir, “Grown Man
Now,” cover shown above.

PRESENTING … BILLY!

Excerpt from “Grown Man Now,”
a memoir by Jane B. Schulz

With the remote control of the projector, he shows slides of his home, his workplace, his church, and his family: he comments on each picture. The audience alternates between tears and laughter; he knows how to play them – pauses for laughs, times his punch lines.

“This is me at Weight Watchers. An’ I loss 30 pounds!”

The audience cheers. Lowering his gaze and his voice, Billy adds:

“An’ then I gain it all back.”

The crowd laughs uproariously, identifying with his struggle.

“An I got a good life,” he says, ending his presentation. The audience stands and applauds.

He smiles broadly, making his way toward me. “How I do?” he asks, seeking my approval. As he envelops me in his huge hug, I reply, “You did a great job. I’m so proud of you!”

I watched my son, a grown man now, as he told his story with poise and confidence. I scanned the audience for their reactions. With his distinctive appearance and unique language, he commanded the attention of hundreds of parents, teachers and other professionals.

During his presentation I drifted back to the delayed diagnosis of Down syndrome, when I had anxiously wondered what his future would be, remembering the uncertainty, the struggles in rearing Billy and the times I had said from the depths of despair, “I can’t do this!” Now, observing him and his poise, I thought, “Who would have dreamed that we could be in this place, speaking to all these people?”…

A tremendous influence on me and the entire family, Billy inspires sensitivity and determination in his siblings. The desire to obtain the best life possible for him sent me back to college to learn and to teach. Billy enhanced my career at every step.

Billy is not all sunshine and light. He has fears and anxieties that present him with overwhelming challenges; he has many weird and puzzling behaviors. But far outweighing those behaviors are his goodness, his generosity and his talent for loving unconditionally.

Billy and I are like beans and corn planted together in an open field: one supplying the nutrient, the other providing the support. We believe that if you want to bring about change you have to be that change.

Jane Schulz meets with David Westling, a professor of special education who invites the Schulzes to speak on campus.