Form of therapy may help kids with cerebral palsy
Cerebral palsy has confined Ben Grysiak to a wheelchair for many of his 13 years, but he's taking small steps toward improving his motor coordination and communication skills.
Thanks to a form of therapeutic instruction known as conductive education, available outside regular school, the Monroeville resident has been able at times to loosen his muscles, speak some sounds and sit unsupported rather than buckled into his wheelchair, his mother, Janet Grysiak, said.
These skills are tied to conductive education's aim: to train the brain to improve its control over bodily movements, and consequently to improve learning and living abilities for those affected by cerebral palsy. The therapy accomplishes this through a variety of repetitious stretching and moving techniques, accompanied by intensive instruction and, often, singing.
"The reason it works is that it's repetitive and consistent, and the children develop the ability to use as much of their motor control as possible on their own," said Janet Grysiak, who along with her husband, Gary, began her son's conductive education four years ago. "It offers an opportunity for those kids to work hard on some of the skills that they can't address in typical school programs."
Conductive education, which originated in Hungary, is aimed toward children and sometimes adults with cerebral palsy, a neurological disorder that inhibits the brain's ability to control the body. The disorder causes mild to severe impairment of motor coordination in some children, and impairment of speech and cognitive abilities in others. Some patients are confined to wheelchairs, while others are able to walk with some assistance. The condition can be caused by many factors, including premature birth -- that was the case with Ben, who attends school at The Children's Institute of Pittsburgh.
According to United Cerebral Palsy, a national charitable organization, there are up to 764,000 people in the United States affected by the disorder, with 9,750 new cases being reported each year.
Although still not widely known in the United States, where conductive education has been around for at least 15 years, the therapy was born soon after World War II in Hungary. Conductors, who undergo extensive training, typically are imported to the United States from Hungary.
Despite a push for wider recognition of the technique as a critical component of education for cerebral palsy patients, conductive education still has its detractors. There continue to be major differences of opinion about the technique's "efficacy and its role in the restoration of function in children and young people with disabilities," according to United Cerebral Palsy's Web site.
Conductive education "is kind of a grassroots movement among parents and educators," said Jennifer Schmitt, a developmental specialist with Achieva, one of two companies that provide conductive education in greater Pittsburgh. (The other is Conductive Education of Pittsburgh.) "It's a whole new world for them because of the developmental approach."
The therapy, done both individually and in groups, includes exercises designed to train the brain to move muscles. In one exercise, children stretch face-down on a table while conductors hold their arms straight. On their own, children then push a ball off the table. Conductors then pull patients up by their shoulders, and children move their heads up and down, on their own. Another exercise teaches children to sit straight up while grasping onto a bar and wearing splints on their arms.
Conductors often sing songs while working to make the process more enjoyable.
"We have to learn that these kids will not develop these skills unless we provide them with opportunities to try," said Janet Grysiak, who also has a 10-year-old son, Luke, and an 8-year-old daughter, Irene. "That's what you do as a parent; you strive to help them improve as much as possible. You're always looking for something different and something that can help them."
Conductors say that while the exercises may resemble physical therapy they're actually part of a holistic curriculum aimed at improving all living skills, from cognition to helping patients learn to dress and feed themselves.
For cerebral palsy patients, the ailment lies not in the muscles, but the brain, said Krisztina Weiszhaupt, a Hungarian conductor who came to America in November 2001 to work for Achieva. "We work with the whole child," she said.
This holistic approach has resulted in significant improvements for some children, parents say. Tina Calabro, whose 7-year-old son, Mark Steidl, attends mainstream classes at Carmalt Elementary School in Brookline, said conductive education has helped boost his academic performance.
"This program makes use of their cognitive abilities because they're very alert and they follow instructions," said Calabro, program coordinator for Conductive Education of Pittsburgh. "The whole program is designed to teach children to control their bodies. Everything physically about them is fine, but their brain makes their bodies dysfunctional."
Using a Dynavox communications device attached to his wheelchair, Mark cheerfully spelled out his own comment on conductive education. The words appeared on a computer screen: "It stretches you on the body."
Conductive education is available for cerebral palsy patients through Conductive Education of Pittsburgh and Achieva, formerly called ARC Allegheny. Conductive Education of Pittsburgh offers a five-week intensive summer camp for $2,500, and Achieva provides individual and group sessions throughout the year at varied prices. Funding is available from the state and other sources for any children who participate, depending on age and other factors. For more information on conductive education, call Nancy Murray of Achieva at (412) 995-5000 or Tina Calabro of Conductive Education of Pittsburgh at (412) 361-3997.