Massage bonds parents, kids
A simple touch between a parent and child can make a huge difference in the life of a child born with a developmental illness.

This was the idea that catapulted the 20:4:80 program, founded by Karen Pape, M.D., medical director of TASC network, and launched with the help of massage therapist Liz Rourk.

The program's name comes from Pape's idea that the first 20 years of a child's life signify the development of their brain; four refers to the number of years that an Olympic trainer prepares to compete in the Olympic Games; 80 refers to the projected life span of a person.

The 20:4:80 program is a series of conferences that began in November 1999 after Pape and Rourk speculated on how massage would interact with and affect neurological disabilities of children with degenerative illnesses.

"These kids are born with incomplete spinal cords or spinabifida and are in casting most of their life," Pape said. "They are always told what they can't do, but we try to help them find out what they can do. What we show them is in the realm of possibility, and it helps give the kids control in their lives."

Rourk and Pape both agreed that parents don't have to learn how to be massage therapists, but they do have to learn how to take care of their children.

"The parents are like a flexibility coach," Pape said. "These children need to keep the plasticity of developing brain skills and areas of motor control. Highly motivated parents are willing to do anything to help their children. They have listened to doctors for years that have told them they can only expect so much. We don't want them to assume a lot of guilt for
what they could have done better."

The first of three conferences was held for parents and children in February 2000 in Orlando, Florida, and three more were held nationwide during 2001, according to Rourk, who instructs at the conferences. The program has drawn families from as far as South America and includes kids ranging in age from infancy to 23 years old.

"Massage brings about balance of proprioception to these kids," Rourk said. "They can get a sense of knowing where their body is in space. The parents and children both end up having the ability to participate and feel better immediately."

Roberta Raymond of Trenton, Maine, and daughter Annie, 12, have found, after attending two of the conferences, that massage can help Annie's muscles achieve full range of movement.

"What massage can do in your life has proved a wonderful piece of education for us," Roberta Raymond said.

"I have noticed Annie is much more comfortable in her day-to-day [life] and has more mobility of independence. Her muscles are developing very quickly, and after eight years of using a walker, we are well on our way to getting rid of that. Annie is real directed toward that goal," she said.

The 20:4:80 program also integrates sports and athletics designed to help parents deal with a lifetime illness and build toward independence for their children's future.

"We encourage parents to warm up their child first and find out what their available range of motion is," Rourk said. "We help them to prioritize and choose one or two areas to work on at a time. We show them how to set up an unwind session after the rush of the day, which is a combo of stretching and the most basic Swedish massage. This also helps them prepare for a better night's rest."

Brian Goodrow of Annapolis, Maryland, attended the Florida conference to help his son, Ryan, with spasticity in his left leg, which manifested itself in a jerky type of motion.

"Ryan was born one pound, 13 ounces at 26 weeks. After selective dorsal rhyzotomy surgery to help release the spasticity, he needed a strong strengthening and stretching program," Brian Goodrow said. "It started with stretching and then I added in the massage. It definitely works better when you use them together."

Ryan's left leg is now looser and stronger, his father reported. "It feels good to do something that is effective that doesn't hurt," he said. "After massaging his leg, I could feel the muscles loosening, and Ryan said it felt great. When he does stretches he usually says, 'It hurts, it hurts." To be able to have a technique that is effective that doesn't hurt is a very good feeling. Between father and son, we both can feel comfortable.

"The commitment has been very beneficial to us," he continued. "This is part of a long-term program that all translates into a happier kid."
 - Erin M. Kelly