Tuesday, March 06, 2007

Drug-free treatments draw disabled children from afar

Ability Camp features conductive, hyperbaric education and events


Six-year-old Kiera Sparks Lucas of Halifax makes her way through a walking drill as camp conductor Krisztina Kelemenne provides encouragement at Ability Camp.

MILFORD, ONT. (Mar 6, 2007)

Lynne Von Flotow and her daughter Eva have held fundraising dances, approached service clubs and put canisters for coin donations on store counters in their hometown of Whitehorse, Yukon.

They have spent more than $10,000 to get to Prince Edward County.

The destination: Ability Camp, a one-storey facility on a back road south of Belleville, established 12 years ago by father and diver medic Kevin Hickling.

Here, disabled children and stroke victims meet for conductive education and hyperbaric oxygen therapy (HBOT). The two natural, drug-free treatments are so effective that some children enter in wheelchairs and walk out five weeks later.

This is the sixth time Von Flotow and her six-year-old daughter, who has cerebral palsy and quadriplegic athetoid, have visited Ability Camp. The first time was when Eva was three.

"We were seeking alternative treatment because mainstream treatment offers us nothing," Von Flotow said.

"As far as therapy goes, we get basically zero. Nothing was hands on. It was all, `you can get this wheelchair or this piece of equipment.' It was all adapting the environment but teaching the kid nothing."

Eva was a premature baby, born at 25 weeks. Hundreds of thousands of dollars were spent in the first six months of her life. But once she was older, she was sent home with no support, Von Flotow said.

When she was a year old, a doctor wrote her a lifetime prescription for diapers. She would never be toilet trained, Von Flotow recalled him saying, and she would probably never talk.

Arriving at Ability Camp, the first question asked of Von Flotow was if Eva was potty trained. When Von Flotow told them she couldn't be, they disputed it.

"They said, 'She can be. You just have to teach her,"' Von Flotow recalls.

Eva has now been toilet trained for nearly two years.

Ability Camp is not magic, nor is it mystical. The miracles that happen here are small, the result of five hours of conductive education per day and daily visits to the hyperbaric oxygen chamber. HBOT involves increasing the level of oxygen going to the brain to stimulate dormant brain cells.

While HBOT is certified by Health Canada for ailments such as thermal burns and carbon monoxide poisoning, other studies have been mixed. The government warns that its benefits for cases of cerebral palsy, multiple sclerosis and stroke are not proven.

But parents such as Von Flotow say otherwise. Eva couldn't talk before she came to the camp, Von Flotow said. Now she says tongue twisters such as "unique New York" while posing for photographs.

Parents and their children travel from as far away as Japan and South America to visit Ability Camp to take advantage of a place that combines the two approaches. Applications recently arrived from Saudi Arabia and South Africa.

Hickling established the camp after being told his daughter Kaitlin, who has cerebral palsy, would never walk.

Hickling refused that diagnosis. He began to investigate alternative therapies, and eventually fulfilled his goal of a low-cost camp for parents like him. Kaitlin is now walking, driving a car and in her second year of university.

Conductive education has its roots in Hungary, and combines aspects of physical therapy and speech pathology. One of Hickling's two "conductors" on staff is from Hungary.

The main thing Ability Camp offers that the mainstream system doesn't is time and attention, Hickling said. The system in Canada offers disabled kids an hour of physical therapy a week, he said. That period of time is too short for most people to excel at anything. Even if kids do learn, he said, they have lost their progress by the next session.

Progress at the camp is very hard work, said Hickling. Ability Camp is the equivalent of a five-week strenuous workout, where disabled children learn to take it to the next level, whether that be learning to roll over, sit up, eat, speak or walk.

Parents are sent home counselled on exercises that will continue the improvement, said Brock Phillimore, Ability Camp's client services manager.

Children and parents stay in 15 dorm-style rooms while at the camp. Lodging is free. The average price for a session of HBOT in the U.S., where the therapy is available in most major cities, is $200 per session. When grouped together as a package at Ability Camp, Phillimore said, the sessions cost less than $100 each.

So if the approach works so well, why is it available only in Prince Edward County, down a back road that people travel from around the world to visit? Why can every kid who needs it not get this service?

Neither Hickling, Phillimore nor Von Flotow can answer that.

It is well known that the earlier the intervention, the better chance for children to improve, Hickling said. But the current mainstream system just does not provide that.

"We're taught to adapt the environment to the kids, but we don't teach the kids to adapt to their environment," he said.

Many doctors simply don't know enough about conductive education and HBOT, Phillimore said. There is also little political will to spread the word about HBOT.

"There is no big money here for people," he said. "It's not like you can patent it and make money off it. There is no reason to push this through."

In the end, Hickling said, assistive devices such as motorized wheelchairs and handicapped-accessible vans have a cost comparable to providing kids with enough physical therapy so they don't need them. When it comes to teaching kids independent skills, he said, the last alternative should be the easy way out.

Von Flotow is trying to change the system. After straining the family finances and struggling with fundraising five times, she took her case to the Human Rights Commission, arguing the Yukon government should be paying for their trips to Ability Camp. After all, she argued, intensive therapy is funded for autistic children, and should also be funded for children with cerebral palsy. In October, the commission ruled with Von Flotow.

A settlement is still being negotiated. Von Flotow is hoping for the best. Their stay ends in early March, and they will be back.

"When I got here, it was like finally someone else saw the potential in my child that I saw," she said, then added with a sigh, "I love this place."