Awakening hope for kids

PROGRAM: One woman's campaign to bring a Hungarian treatment for cerebral palsy to O.C. has inspired other parents.

April 7, 1999

By JOHN GITTELSOHN
The Orange County Register
From Irvine

 

TUNE TIME: Gabriella Kovacs, left, and Anna Muncz, who are both 'conductors' in conductive education, sing as they help Alexus Lee, 3, in stretching exercises at the Kids for Conductive Education school in Irvine. Photos by H. LORREN AU Jr./The Orange County Register REACHING OUT: Bryn Cabanillas, 10, gets help from aide Maria Francin in working on motor skills. The girl, born prematurely, developed most of her health problems four years ago after medical complications.

This is a small center of hope for seven small children with cerebral palsy.

The children, ages 3-10, are learning to hold up their heads, raise their arms and stand on two feet at a school named Kids for Conductive Education.

For six hours a day, they stretch, roll and hoist themselves to the music of nursery rhymes, sung with a Hungarian accent by women called "conductors," who follow a conductive education course developed in their native country after World War II.

"I am standing, I am standing," conductor Gabriella Kovacs, 27, sings to the tune of "Are You Sleeping?" or "Frere Jacques."

She sings "Down by the Bay," "She'll Be Coming Round the Mountain" and "This Old Man," all the while massaging, stretching and exercising children who cannot walk, control their muscle spasms or speak clearly.

The constant movement and stimulation aim to loosen calcifying tendons, revive atrophying muscles, awaken dormant brain cells. Sometimes the children giggle, tickled by the conductor's touch. Sometimes they cry with pain.

The goal is to give the children control over their bodies so they can feed or groom themselves, so they can speak for themselves, so they can hold their heads still enough to focus their eyes and learn to read.

"The goal is full inclusion in a normal school," Kovacs says. "To make them as independent as possible."

Kovacs helps Kyle Tinder, 4, straighten his legs while he clings to a wooden ladder. Kyle was born with cerebral palsy and a seizure disorder.

Two years ago, his mother, Peggy Tinder, saw a television documentary on conductive education. She sent Kyle to a summer school in Northern California, where the therapy rapidly improved his strength and coordination.

Kyle's progress contrasted dramatically with his experience in an Orange County public preschool program, where disabled children received little stimulation. Tinder called it a program for "Velcro kids," because some of the children were literally stuck in their seats or wheelchairs with Velcro.

"He regressed," Tinder said.

She considered leaving Orange County so Kyle could attend a conductive education program. Instead, she decided to start a school here.

She arranged to have the specially designed wooden furniture built. She hired an attorney to get visas for Kovacs and another Hungarian conductor, Anna Muncz, 28, because the only trained "conductors" come from Hungary. They are called conductors because they are not licensed as teachers or therapists.

Tinder knocked on doors around Orange County, searching for a place to house the program. Finally, the Rev. Steve Tsichlis agreed to let her use the multipurpose room at St. Paul's Greek Orthodox Church, charging only for utility and maintenance costs.

"They're doing good things, and it's important they have a place to do it," Tsichlis said. "The Apostle Paul says to honor anything good and true and right. And this is good and true and right."

Now Tinder is trying to make her not-for-profit school, which opened last June, financially viable. Besides the two Hungarians, the school has four assistant conductors, so each child receives personal hands-on treatment most of the day.

Tinder charges $1,200 a month in tuition, but costs are closer to $1,700 per student, she said. She has personally loaned the school $20,000.

"Many more parents want to send their children here, but their families can't afford the tuition," she said.

Joanne Minor, executive director of United Cerebral Palsy Association of Orange County, said conductive education is too expensive for her charitable organization, especially because there have been no scientific studies to demonstrate its benefits.

"Anything that intensive is going to make a difference," she said. "But whether it makes a difference in the long run, we don't know yet."

Parents at Tinder's school have few doubts. Mike and Mary Lee of Costa Mesa collected donations from their church so their daughter, Alexus, 3, can attend the school.

Richard and Rhonda Hill of Rancho Santa Margarita borrowed money from their parents, refinanced their house and dipped into his policeman's retirement fund to finance the tuition for their daughter, Chelsea.

Chelsea, 4, was born three months premature and had a collapsed lung, which her mother said caused her condition. Before conductive education, she could walk about 15 feet with a walker before becoming exhausted. Now, with two canes, she can scramble for hours. She speaks in complete sentences. She is learning her letters and numbers, ready and eager to go to kindergarten this fall.

"This program has let me hope again," Rhonda Hill said, her eyes tearing up.

Dee Eastman of Las Flores drew applause from fellow parents at the school when she announced last month that the South Orange County Special Education Local Planning Agency was paying the tuition of her daughter, Meagan, 6.

"We told them that it's a better way to meet her educational goals," Eastman said. "Our main theme is that the child who doesn't have the ability to move can't progress as rapidly cognitively."

Bob White, director of the South Orange County SELPA, said he agreed to pay Meagan's tuition based on parents' anecdotes about their children's progress.

White has required reports charting Meagan's progress in the program as a condition of paying her tuition. He is considering opening a similar program at a county school so children can undergo their exercises while getting an academic education. White also conceded that he has little heart to crush the hopes of parents with disabled children.

"As a parent, if I heard there was something that may help my child, I'd want it," he said.

Tinder said she harbors no illusion that conductive education can cure children like her son. But she is convinced it can make their lives better.

"Kyle will always be dependent, but the question is to what degree," she said. "I hope he'll be able to express himself and to have a happy life."

Copyright 1999 The Orange County Register