Discovering New Hope Mother And Daughter Want More Children To Have The Option To Try Conductive Education
The story of 11-year-old Susanna Sweeney-Martini’s trip to England to meet the princess begins like a fairy tale.
There was the moment Princess Di’s green Jaguar turned through the gate of the National Institute of Conductive Education in Birmingham and roared onto the grounds. There was the moment the princess wafted into the room “like a piece of paper floating in the air.” There was the instant that Di hoisted a baby from the crowd to her shoulder and didn’t flinch a royal eyelash when he drooled all over her designer suit.
But in the unexpected moment when Princess Diana walked right over and sat down to talk with Susanna and her mother, Susan Sweeney of Spokane, real life - and controversy - intervened.
Princess Diana asked why one of her pet projects, conductive education for children with cerebral palsy, was having such a difficult time taking off in the United States.
The answers point to a global dispute over the proper treatment for children with cerebral palsy and, at the same time, illuminate the struggle of one determined mother from Spokane.
It all began in 1991 when Susan Sweeney, a Spokane special education teacher and lawyer, took her daughter to Hungary for conductive education. Doctors had predicted Susanna would never sit, stand or walk. She had been strapped in a wheelchair from age 2.
Finally, in Hungary, Susanna and her mother found hard work, and a miracle.
At the Peto Institute in Budapest Susanna learned to sit, stand and take a few steps alone.
When she returned, her pediatrician, Dr. Peter Holden, pronounced the results “dramatic.”
Susan Sweeney struggled to find ways to continue Susanna’s treatment in the United States. Most doctors, physical therapists contacts at the national cerebral palsy organization weren’t interested.
“When Susan said, ‘Can I have more?’ the world said, ‘No.’ Susan does not take ‘no’ for an answer,” says Thomas Martini, Susanna’s father and Sweeney’s ex-husband.
In the years since Susanna’s trip to Hungary, Susan Sweeney has fought a lack of money and information to start the Association for Conductive Education. She has opened a private school modeled after the Hungarian institute here in Spokane.
“If she couldn’t bring Susanna to the mountain, she’s bringing the mountain to Spokane, rock by rock,” Martini said.
Today, blue-eyed, blond Susanna is as bright and articulate as her lawyer mother.
The two have appeared on national television, and are among America’s leading advocates of conductive education.
That’s why, when the National Institute of Conductive Education dedicated a new building in Birmingham, England, this fall, Susanna was invited to speak.
Susanna’s parents and brother flew with her to England where, on Oct. 31, she spoke in front of Princess Di and other gathered dignitaries.
Susanna said, “I hope in the future children in America will be able to have conductive education like children in England have.”
Conductive education was developed hidden behind the Iron Curtain in post-war Hungary. Americans tend to accept the limitations of cerebral palsy and have developed high-tech wheelchairs and computers to help children adapt. But the cash-poor Hungarians could not afford this approach.
Instead, they trained teachers, called conductors, to actually teach children to walk. They used small wooden furniture, stories and songs to cue the children’s bodies to move properly.
Children with cerebral palsy in the United States might see a physical therapist once a week. The therapist manipulates their bodies to prevent them from becoming stiff.
But in Hungary, the children spend six hours a day learning to move their arms and legs themselves.
It wasn’t until the 1980s that the outside world began to hear of the Hungarian approach.
It’s now available in England, Ireland, Scotland, Wales, Israel, Austria, New Zealand and Canada. But it’s nearly impossible to find in the United States.
One of the few American schools is Sweeney’s, located in a daylight basement on Spokane’s North Side.
For five summers, Sweeney has flown a Hungarian teacher to Spokane to duplicate the training Susanna received in Budapest.
The children made progress during the summer, but as with any fitness regimen, they lost ground through inactivity during the school year. This fall, Sweeney began an after-school program for eight children that will continue their gains through the school year.
It’s been a remarkable accomplishment, given the typically American indifference to education and health care developed outside of this country.
Sweeney has been particularly frustrated by the lack of interest from the United Cerebral Palsy Associations in the United States. The group has provided neither research nor advocacy for conductive education.
When she discovered that a New York City affiliate of the organization is planning to give Princess Diana a humanitarian award in New York this month, primarily for her support of conductive education in England, Sweeney was stunned by the irony.
After the dedication ceremony in Birmingham, Sweeney talked to a reporter from The Birmingham Post. The newspaper ran a story headlined, “Di urged to boycott award in wrangle over U.S. charity.”
The story quoted Sweeney on Princess Diana: “She seemed really interested in what we were doing in the USA and surprised it (conductive education) is not really established in the country.
“I think she has no idea what is going on. I am sure it is a big award and she is a wonderful person. But the situation is ironical, to say the least.”
Back in Spokane, Sweeney laughs over the furor caused by the few remarks she made to the British reporter. But her exasperation with the United Cerebral Palsy Associations continues.
Susanna was born 4 months premature, weighing 1 pound 3 ounces. She couldn’t breathe on her own, and the loss of oxygen damaged the motor center in her brain.
She has both athetoid and spastic cerebral palsy. Her nerve cells send garbled messages from her brain to her arms, legs and feet, causing them to move randomly.
Now, thanks to conductive education, she can sit in a regular chair, touch her feet to the ground and hold her trunk much straighter. She wears splints to help her stand, and she can walk holding her mother’s hands.
When the syndicated television news magazine “The Crusaders” filmed a piece about conductive education a year ago, Susanna was the star.
“I’m going to do whatever I want, however I want to do it. Period,” she announced firmly to the camera.
Susanna serves on the Principal’s Cabinet at Jefferson School and recently won a spot on the school drill team. She loves to swim and hopes one day to join the Para-Olympics racing team.
She’s still amazed that she managed to meet the princess.
After the program, the princess surprised Susanna and her mother by sitting down to chat.
“You must be very proud,” Princess Diana told Susanna’s mother.
Sweeney remembers fumbling through her answers to the princess’s questions and listening to her daughter chat as though she converses with royalty every day.
Sweeney also met Countess Ilona Esterhazy, one of the last of the Hapsburgs of the Austrian-Hungarian empire. The countess was surprised to hear that conductive education was not widely available in the United States and offered to help.
Sweeney has mortgaged her house to the hilt and spent $70,000 on conductive education and Susanna’s special needs. She was tempted to ask the countess to help pay for their plane tickets to England.
After five years of flying in teachers from Hungary and paying their salaries, Sweeney is nearly broke.
But she perseveres because she believes that relying on American treatments will only limit Susanna’s future. As she finds alternatives, she shares what she’s learned with other parents. She knows they share the same drive.
“We’re not crazy, we’re not looking for miracles, we’re not nuts. We’re just chugging along looking for what works,” Sweeney says.
And so she has written a letter to the Princess of Wales at Kensington Palace in London.
“Your Royal Highness,” it begins.
“I am writing to ask if you might intercede with the United Cerebral Palsy group when you are in the United States. …”
, DataTimes ILLUSTRATION: 3 color photos
MEMO: This sidebar appeared with the story: GROUP UNABLE TO SERVE ALL THOSE AFFECTED Susan Sweeney recently logged on the Internet to ask other parents of children with cerebral palsy if they’ve ever received help from the United Cerebral Palsy Associations. Out of approximately 50 responses, the majority said all the organization did was mail them fact sheets on cerebral palsy, information they’d already received when their children were diagnosed. One parent reported his child had attended a UCP-sponsored preschool on the East Coast. “They collect millions of dollars,” Sweeney says. “I’d like to see them spend it.” Michael Morris, acting director of the United Cerebral Palsy Associations in Washington, D.C., said he was not surprised by the results of Sweeney’s informal survey. Of the 500,000 to 700,000 people with cerebral palsy in this country, UCP is able to serve only 30,000 to 50,000, Morris says. Eighty percent of the funding for UCP and its affiliates comes in the form of federal grants. Much of the national group’s energy goes to lobbying Congress against current proposals that would drastically limit services to people with disabilities, Morris said. Spokane does not have a UCP affiliate that could bring more direct services to parents such as Sweeney, Morris said. As for bringing conductive education to the United States, Morris says major roadblocks exist, including lack of research, difficulty in training American teachers in Hungarian methods, and opposition from professional associations representing American occupational and physical therapists. “My own view is that conductive education as well as a number of new interesting approaches need to be explored thoroughly and objectively,” Morris says. “We need to push for government support that would allow us the framework for this research.” Jamie Tobias Neely