Moving Experiences : Severely Handicapped Children Make Miraculous Strides in a Common-Sense Classroom Program

Six months ago, 5-year-old Jo-Jo couldn’t sit in a chair, Robby couldn’t bear weight on his feet, and 4-year-old Crystal couldn’t move about without her wheelchair.

These children, like others at Sven Lokrantz Special Education School in Reseda, are severely handicapped. Their parents were told they would never sit, stand or walk.

Today, Jo-Jo can sit in a chair during snack time, Robby can stand, and Crystal can take steps across the room.

“It’s a miracle,” said Anita Boyance, Robby’s mother. “We’ve been waiting for a program like this forever.”

The miracle is nothing more than common sense, the program nothing more than a structured way of giving these children a chance to learn basic mobility in a public school classroom. It is called MOVE--Mobility Opportunities Via Education--and in January the Los Angeles Unified School District approved the program for each of its 16 developmentally handicapped schools attended by approximately 200 children.

“For years these children were just written off the books because they weren’t thought to be useful in any way,” said Dick Towse, principal at the Blair Learning Center in Bakersfield, where the MOVE program was developed. “Now, for the first time ever, there is hope for this population of people.”

Last summer the idea was presented to Phil Callison, Los Angeles Unified School District director of special education, who agreed to try the program for one semester at Lokrantz. When the children made tremendous progress, Callison approved the program to begin this semester at all special-education schools in the district.

“I have never seen the teachers of a special education school so excited as they are about this MOVE program,” Callison said. “Yes, it’s good for the students. But it’s at least as good for the teachers. There has never been any reason for them to believe they can make a difference until now.”

Despite volumes of medical literature to the contrary, teacher Linda Bidabe at the Bakersfield school long believed that severely handicapped, non-ambulatory children could move if trained properly. For years there was no one who believed in her theory and no equipment on the market to help.

Bidabe might never have pursued her beliefs if it weren’t for a handicapped boy named Timmy. In 1978, 9-year-old Timmy was given a chance to move about in a makeshift mobile stander. The machine--pieced together by Bidabe--was a cross between a walker and a wheelchair, but it forced Timmy to bear weight on his legs. Within a few weeks, Timmy was able to move down a hallway in an upright position for an hour at a time, and in two months he could take steps with little assistance.

Then the semester and Timmy’s physical training ended. The next year, Timmy was transferred to a different school, and it wasn’t until eight years later that Bidabe saw him again. This time Timmy, 17, was lying on a beanbag chair completely immobile, his body shrunken and atrophied. He recognized Bidabe and began to cry.

“I asked him if he was in pain, and he rolled his eyes back,” Bidabe said. “For Timmy, that meant yes.”

Timmy’s teacher explained that Timmy’s hips had atrophied so badly that doctors had placed pins in them to keep them in place. Now, a year after the surgery, the pins were working their way through Timmy’s skin, causing excruciating pain. In addition, lack of activity had caused Timmy’s spine to become hopelessly curved, making breathing difficult. The teacher told Bidabe that Timmy’s doctors were considering severing his spinal cord to eliminate the pain.

The following month, Timmy died of pneumonia complications.

“That was a turning point in my life,” Bidabe said. “I vowed then and there that there would be no more children like Timmy, no more children who would die without having a chance to really live.”

That summer, in 1986, Bidabe launched a pilot MOVE project with several of her most severely handicapped children. With financial backing from Kern County Superintendent of Schools Kelly Blanton, Bidabe adapted existing equipment and programs so that children in the project were taught just three things at school: how to sit, stand and walk.

The relatively simple program involved integrating every aspect of curriculum into a physical activity. For example, when the speech therapist worked with the children, the children would be standing in an upright stander instead of sitting in a wheelchair. If it was time to do artwork, the children sat in slightly modified chairs that would prevent them from falling but would force their back and stomach muscles to work throughout the activity.

The teachers at Blair found that by helping a child several times a day try an activity such as sitting or standing, in a matter of days the child would advance from tolerating it for a couple seconds to sitting and standing for an hour or more. Everything they did during the pilot project contradicted traditional thinking on the limitations of severely handicapped children.

“I was shocked at the results,” Bidabe said. “I knew the children needed more mobility, but I didn’t expect to see results so quickly.”

Bidabe and the other teachers in the project ignored traditional thinking that a child must lift his head before he crawls, crawl before he sits, sit before he stands and stand before he walks. For hundreds of years teachers had been trying to teach severely handicapped children to lift their heads without any success. It was time to break traditional thinking, Bidabe said.

In five months, children who previously had never stood up, or sat in a chair could do so. The success stories were abundant, and people throughout the Kern County School District began to notice.

“It wasn’t that we were curing these children of all their handicaps,” Towse said. “But as they learned to sit, stand and walk, other changes happened that were changing their lives.”

Before the project, children with cerebral palsy and other multiple handicaps often gazed lifelessly into the distance. Once they were mobile, these children began to laugh and communicate with their teachers and each other. Another immediate benefit of being upright and moving about was a dramatic decrease in life-threatening illnesses.

“We understand so much more now,” Bidabe said. “When a child is slowly dying from lack of movement, it would be only natural for that child to be depressed and ill. The body is designed to be mobile and upright.”

For the next two years, the program flourished while the rest of the handicapped world was unaware of the progressive therapy.

In fact, last spring, Kim and John Leonetti of Van Nuys were going through the initial steps of enrolling their 3-year-old son, Nicholas, into a developmentally handicapped program in the San Fernando Valley. Nicholas, who is severely handicapped, had almost no muscle ability and had never stood or used his hands. He had been seeing a private physical therapist since he was 5 months old.

“But when I asked about the therapy he’d receive in public school I was told he would be put on a waiting list,” Kim Leonetti, 34, said. “The list was 500 students long.”

The little progress the Leonettis had seen with Nicholas was due to traditional physical therapy. The thought of entering him in a public school system with little or no therapy made them seek alternatives.

In early April, Nicholas’ physical therapist recommended the MOVE program in Bakersfield, and Kim Leonetti watched a videotape on it.

“I cried through the whole thing,” Leonetti said. “What a crime that no one thought of this before. What a tragedy that we’ve all underestimated these children all these years.”

Three weeks later, Leonetti rented an apartment in the Kern County School District and enrolled her son at the Blair Learning Center. She was told that in five weeks, Nicholas would be sitting in a chair without support from braces and straps.

“I knew in my heart it wasn’t possible for Nicholas to sit in a chair after just five weeks. The doctors said he’d never sit in a chair,” said Leonetti, whose husband is a studio cameraman and was filming on location in Arizona when his wife and son moved to Bakersfield.

Nicholas wasn’t sitting in a chair in five weeks--it only took half that time. Within five weeks, Nicholas was moving about in a mobile stander--one of three pieces of equipment now available for the MOVE program through Rifton Manufacturing Co. in New York.

During his second month there, Nicholas began taking steps. He started with five steps one Thursday, and by Monday he took 67 steps. Leonetti videotaped the moment and sent it to her husband in Arizona.

“He called me as soon as he got it, and he couldn’t even talk,” Leonetti said. “It was one of the most emotional moments in our lives, to know that our son was walking after everyone told us he would never be able to.”

As Nicholas progressed, the Leonettis and another family from the Valley who had moved to Bakersfield for the program, began to interest Lokrantz special education teacher Lori Loven in Reseda in the MOVE program.

Loven, who had taught at Lokrantz in Reseda for eight years, was experiencing burnout because none of her students were making progress.

“I wanted to change careers,” Loven said. “Nothing was working, and I was beginning to feel like I was little more than a glorified baby-sitter.”

Public education for severely handicapped children has always been considered relief day care, rather than anything that will improve the children’s condition, public educators said. But when Loven learned about the progress in Bakersfield, she received permission to spend several weeks at the school to learn the program.

Like other special education teachers who hear of the MOVE program, Loven was skeptical.

“Teachers like to think that they know what they’re doing, and that if there was some way of getting these kids to respond, they would have found it,” Loven said. “But seeing is believing, and as soon as I saw the results they were getting in Bakersfield, I knew we had to have the program in our school district too.”

Loven said it did not take long to persuade Callison, the director of special education, and the LAUSD to give the program a chance.

“Nothing has ever worked like this is working,” Callison said.

Physical therapists are not needed to facilitate the program, but they are needed to advise teachers.

To start the program at Lokrantz, the parents held a fund-raiser and hired a private physical therapist to consult with the teachers eight hours a week. In January, Callison approved $350,000 of state funds earmarked for special education programs to be used on the MOVE program in 1991. The money will go toward buying new equipment. Several physical therapists will be hired under the current LAUSD budget allotment for special education staff.

“Eventually, this will save us lots of money because the children will require less adult supervision and assistance and less equipment as they get older,” Callison said.

Typically, severely handicapped children stop showing signs of progress after age 7, and by the time they are adults they are often institutionalized, said Towse, the principal at Blair Learning Center.

“It isn’t that the parents don’t want to care for their children any longer,” said Rose Engel, principal of Lokrantz. “They simply can’t handle it physically, emotionally and financially.”

Those involved in the MOVE program believe that teaching children mobility will greatly reduce, and perhaps even eliminate, the need for state-funded institutions.

The Leonettis have had more than their share of victories in the year since Nicholas began learning to sit, stand and walk. In the first three years of his life, he had 13 life-threatening illnesses and surgeries. Since starting the MOVE program, he has had none.

“It used to be that when we were at a family gathering his cousins would run off and play, leaving Nicholas lying on the floor crying, completely motionless,” Leonetti said. “Now, because he’s standing up, they come up to him and play with him. And he plays with them.”

But perhaps the most rewarding day of all came in January when Nicholas, now 4, was roaming about the house in the mobile stander. His mother was in the kitchen when she felt him come up behind her and hug her legs.

“It was the first time my son ever really told me he loved me,” Leonetti said.

Leonetti and other parents of children involved in the program have created a nonprofit organization called Friends of MOVE whose goal is to get the word out that there is hope for children who in the past were relegated to wheelchairs and beanbags.

“I see kids in wheelchairs now, and I want to run up, shake their parents and say, ‘Haven’t you heard of the MOVE program?’ ” Leonetti said. “I mean just think how long we’ve underestimated these children. Who knows what they can do if given the chance.”