A chance to overcome disabilities

Training for events in Special Olympics provides skills, confidence

September 26, 2001|By Laura Dreibelbis | Laura Dreibelbis,SPECIAL TO THE SUN

Some people doubted Barbara Erin Sheehi would ever walk or talk. She was born with multiple cognitive and physical difficulties, but she also had perseverance and devoted parents who wanted the most for their daughter.

Through their love, support and a refusal to give up despite the odds, Barbara participated in Special Olympics track and field events in the spring. She found new confidence, physical stability and mobility -- all apparent to her family and the staff at Cedar Lane School in Columbia.

"We do see a tremendous confidence and self-esteem boost in these guys. One goal of Special Olympics is to give this population of athletes an opportunity to succeed," said Bob Baker, director of Special Olympics in Howard County, which provides training and competitive opportunities for mentally challenged adults and children.

"Students who come to Cedar Lane typically have severe and profound disabilities to the extent that they are not able to receive their education in a general education setting," Principal Nicholas Girardi said.

The school's focus on teaching life skills has helped Barbara learn to walk, communicate orally and eat on her own, said Barbara's mother, Dorothy Sheehi, praising the staff's dedication and caring.

Barbara, who will turn 12 Oct. 7, was born with septo-optic dysplasia with pituitary involvement, a rare disorder in which her brain failed to form completely. This resulted in status epilepticus (seizures that won't stop without medication), developmental delays and visual impairment. The pituitary involvement means that Barbara suffers from deficiencies in hormones necessary to the proper function of vital organs.

During her first five years, Barbara struggled for survival, suffering two or three potentially fatal seizures a month. A deficiency in a hormone that regulates the balance of fluids in her body put her in constant danger of lethal dehydration. Her parents were told it was quite likely one of her seizures would kill her.

"We spent hundreds of hours in emergency rooms, intensive care units and hospitals. Our lives were chaos," Joe and Dorothy Sheehi wrote in a two-page biography of their daughter.

Their first pediatric neurologist painted a grim picture. "He thought we should find an institution to place her in and get on with our lives," the Sheehis wrote.

They did get on with their lives, with Barbara, spending countless hours working with new doctors and "pushing the envelope" to find hormone replacements, control the seizures and regulate her fluids. When Barbara was about 9, they finally found the right combination of medications. She has not had a status seizure in two years.

In the spring, her parents pushed the envelope again, enrolling her in the track and field program to provide more physical activity and social contact. Joe Sheehi heard about Special Olympics from a friend but said in an interview that he did not think Barbara was a candidate.

"I thought, `Why do we want to take her to a track and field event?' I didn't think she would be up to the task," he said.

Barbara proved him wrong, thriving in the environment of support, encouragement and competition, provided by volunteer coaches and other athletes.

"The community of people involved in Special Olympics are just wonderful people," Dorothy Sheehi said.

Watching Barbara being cheered on by spectators as she neared the finish line was moving to her parents. They also give much credit for Barbara's development and self-esteem to her longtime caregiver, Jeannie Stewart.

In March, Barbara was stiff-legged and able to go only a short distance. But by June, she was bending her knees more, walking faster, completing four laps around the track -- equal to one mile.

In the 50-yard dash, she may have been last, but it didn't really matter, her parents said. She learned how to start and keep going the distance. Her father believes she might run one day.

"It was an incredible benefit to Barbara," Joe Sheehi said.

Barbara now pushes her mother to go places instead of waiting to be led by the hand.

"She's getting bossy," Dorothy Sheehi joked.

The Sheehis are making plans for Barbara to compete next year. They're looking for new shoe inserts that will give her ankles more flexibility for running.

"We're willing to stretch a little more next time," her father said.

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