Advertisement

Mom fights for kids with MD

January 08, 2001

Mom fights for kids with MD



By ANDREA BROWN-HURLEY / Staff Writer


BOONSBORO - As her son lay dying last May, Olive Peters witnessed one of his many hard-wrought victories. Wayne Peters was able to write his last wishes.

"I do not know if I'm going to live or die," he wrote after requesting that his breathing tube be removed. "But if I die, I know that I will be with God. I only wish that my mother did not have to be lonesome."

Reading the words, Olive Peters held Wayne, the second of her children born with muscular dystrophy, a genetic disease characterized by the progressive degeneration of muscle tissue.

"How could I ever be lonesome with the mountains of memories you have given me," she told him.

Like his older sister, Judy, Wayne Peters died from pneumonia, a common complication of muscular dystrophy. His father died from adult onset of the disease 14 years ago. The Peters' youngest child, Bob, was born without muscular dystrophy and lives in Michigan.

Advertisement

Olive Peters, who lives in a cottage at Fahrney-Keedy Home and Village in Boonsboro, devoted much of her life to making sure her two disabled children were given the opportunities available to Bob and others without serious health problems.

At a time when children like Wayne and Judy were often institutionalized, taught only the "social graces" or kept at home "behind closed shades," Peters said, she made certain her special children learned to read and write.

It wasn't easy.

'Go home'


Little was known about muscular dystrophy when Judy Peters was born in the 1950s. Doctors had no answers, and people in their small hometown on Manheim, Pa., accused the Peterses of poor parenting when their infant daughter didn't develop like other children.

A fellow churchgoer once looked at the disabled child and told Olive Peters to "go home and be a good mother," she said.

When they were invited back to the church, Peters taught in the nursery so she could better monitor her daughter's condition. Judy was slow to learn and walk, but her parents wouldn't give up.

"She did walk because my husband and I kept at her," Peters said. "We just wouldn't let the doctors tell us she couldn't."

Although Judy wasn't formally diagnosed with dystrophy until she was 9, her parents finally found a pediatrician who suspected the disease. Olive Peters attended a muscular dystrophy clinic to learn more about the disease until the clinic coordinator told her to stop going, she said.

The Peterses were advised to keep their daughter out of school, but Olive Peters found a private kindergarten for her child.

"I just thought it couldn't be. I didn't want Judy separated from the other kids," she said.

'Special' education


Judy eventually entered one of the first special education classes in the country, where the social graces were stressed but reading and writing wasn't, Peters said. She volunteered in Judy's classroom and visited the homes of the other children to get a better grasp of the situation in her community.

"I kept working. I kept trying to say something to everybody," Peters said.

She wrote letters to her state representatives and senators. She visited the state capitol in Harrisburg, Pa.

"They listened politely, but that was about it," Peters said.

The family's pediatrician suggested another child in hopes that a sibling would help Judy's development. Wayne Peters was also born with muscular dystrophy.

He wasn't diagnosed with the disease at first, but his parents could tell immediately, Peters said.

She and her husband took the same steps with their disabled son they had with their daughter.

Olive Peters insisted that Wayne be allowed to attend first grade in public school. Then she dropped by his class one day and saw him sitting alone in the back of the room.

"When I saw him sitting there so forlornly, I knew something had to be done," Peters said.

New environment


She found a special education school in northern Pennsylvania. Judy was sent to the school first. Her younger brother began to attend a year later.

The children bloomed in the accepting environment, Peters said.

During the two years she attended the school before dying suddenly at age 16, Judy learned her alphabet and how to print. Wayne learned how to read, print and write during his eight years at the school, Peters said.

She also began a new education through her work with the Lancaster (Pa.) Association for Retarded Citizens.

Peters started a UNICEF program in her town, organized LARC's first "bike-hike" event to raise funds and awareness, spoke about disabilities at public forums, and continued to lobby her state representatives for the rights of people with disabilities.

"People began to wake up" when the Americans with Disabilities Act became federal law, Peters said. "That's when the country decided that people with disabilities shouldn't be institutionalized."

Fighting prejudices


When her son returned from school at age 19, she helped him find work and supported him through the prejudices he faced in the workforce because of his disability.

The Herald-Mail Articles
|
|
|