'For our kids, they’re big steps'

By Terri Finch Hamilton
The Grand Rapids Press
Septermber 30, 2001

Seven-year-old Jonathan Houtman grins as he walks down the hall.

The sleek, adjustable green contraption he’s in is giving the smiling boy freedom. When you have cerebral palsy, you don’t get much of that.

“Look at him go,” says Jonathan’s physical therapist, Roger Buurma, who watches, grinning, as Jonathan motors along, leaving his sandals in his wake. “Hey, you’re walking right out of your shoes,” Buurma says.

“You can’t imagine the head and trunk control he’s exhibiting right now,” Buurma says. “Look at him – he’s walking. If that doesn’t bring a tear to your eye…”

Jonathan is walking because the staff at this school, the Ottawa Area Center in Zeeland, is using a new way of helping kids with disabilities learn to stand, sit and walk. It’s called MOVE – Mobility Opportunities Via Education.

It was founded by California special education teacher Linda Bidabe, who devised MOVE after watching a disabled boy named Tommy come to life as soon as she rigged a contraption that helped him walk and run. Bidabe will visit the 240-student Ottawa Area Center Monday and Tuesday to train the 125-member staff in her curriculum and teach parents how to help their children at home. Buurma and co-worker Tom Dryer are trained in MOVE. They attended a four-day training in California in June.

Two staff members at the Lincoln Developmental Center in Grand Rapids were at the California training, too. Lincoln, which teaches 100 of Kent County’s most severely impaired and medically fragile young people, is piloting MOVE in three classrooms this fall.

The relatively simple program basically teaches students three things – how to sit, stand and walk. The focus is on learning skills that make everyday life easier – on the young people and their care givers.

It’s a whole new way of helping kids with disabilities, from cerebral palsy to muscular dystrophy to spina bifida. The traditional approach had students following a developmental course that mimicked infant behavior. First they learned to creep, then crawl, then roll over.

“If you missed a milestone,” Buurma says, “you went back. It meant we had 21-year-olds practicing creeping. That’s not the way to go.”

The Bidabe approach gets children up out of their wheelchairs right away and teaches them to sit, stand, bear weight and walk, sometimes with help, sometimes on their own.

It means standing up to go to the bathroom – just like other boys. It means sitting long enough to go grocery shopping with mom, or joining the family at the dinner table. It means walking a few steps into a restaurant and leaving the bulky wheelchair in the van.

So the staff members at the Ottawa Area Center fight over the two green steel gait trainers they affectionately call “John Deeres.” They need more, but at $1,100 each, funding gets in the way. Bidabe helped design the trainer, along with several other pieces of equipment.

Standing and walking, with help, is the preferred locomotion here now. Wheelchairs often are pushed by the wayside.

“We used to leave students on the toilet for 45 minutes, hoping that at some point they would go,” Buurma says. “Now getting to the toilet as independently as possible is the morning lesson. They sit for 10 minutes, then they’re up again.”

Three-year-old Carly Fitzwater, who has cerebral palsy, sits in a Bidabe-designed chair frame for about 10 minutes at a time, her arms strapped down so she can practice leaning her weight on her arms, sitting slightly forward. She practices holding her head up.

“If a child has no head control, he can’t look at anything long enough to learn,” Bidabe says. “He can’t make any choices – he has to look wherever his head lands. His ears aren’t catching sound in a normal way. If his head is going everywhere, it’s so hard to feed him. Food is running down the back of his mouth, and he ends up breathing food into his lungs. It’s a horrible, horrible situation.”

The key to head control, she says, is forearm support. Her chair frames strap a child’s forearms to armrests, slowly helping them learn to support their weight.

“Teaching a child to be able to sit on their own is a huge accomplishment,” Buurma says. “You can’t imagine what a difference it can make for the parents. It means they can bathe their child sitting in a tub. It means they can take the child grocery shopping, because he can sit in the cart. It means everything.

“What we’re working on now with kids gets at the things that break parents’ hearts and break their backs.”

Even if they sit in a regular chair for three seconds, we all applaud,” says teacher Kris Bour. “For us, they’re small steps, but for our kids, they’re big steps.”

Outside in the hall, 6-year-old Heather VanKlompenberg scoots across the carpet in a Bidabe-designed dynamic stander. She propels herself along by turning wheels, wheelchair style. But instead of sitting, Heather, who has spina bifida, is standing, balancing her own weight.

Heather says she likes standing up. That’s as important as the health benefits, Bidabe says.

“It makes you the same height as your peers,” she says. “So often that’s what makes a child blossom.”

Buurma, a physical therapist since 1965, strides around the center beaming.

“We’re getting them out of those wheelchairs, sitting them in chairs at tables just like you and I,” he says. “Research shows it takes 2,000 repetitions for these kids to learn how to do something. That means we better start early.”

MOVE, though, isn’t about miracles, Bidabe cautions.

“We don’t cure anyone,” she says. “But every child should be living life the best they can, making their own decisions, having fun. A huge percentage of the children out there with disabilities can take steps, if given the right help.”

Bidabe, 56, travels the world teaching teachers and parents how to help disabled youngsters become as functional as possible.

“We’re still very young,” Bidabe says. “For something like this to take off it often takes 20, 30 or 40 years.”

The MOVE curriculum is being used at more than 1,000 U.S. sites and is printed in 10 languages, says Dave Schreuder, a West Michigan native and administrative director of the nonprofit MOVE International in California.

“It’s spreading almost solely by word of mouth,” says Schreuder, who says he recently talked to Prince Charles, who decided to adopt MOVE as part of a new special education initiative in England.

In West Michigan, word of MOVE hasn’t spread much beyond the special education community, but those who work with people with disabilities like the sound of it.

“Anything that helps people move toward independence,” says Dave Bulkowski, director of the Center for Independent Living in Grand Rapids. “The earlier you start, the better.”

At Mary Free Bed Hospital and Rehabilitation Center, program coordinator Linda Erickson says MOVE seems to have a similar mission to the rehabilitation specialists there.

Schreuder is encouraged by the enthusiasm at Lincoln Developmental Center and at the Ottawa Area Center, and says when training is completed and MOVE is in full swing, they could become model sites for MOVE.

“I’ve never known a place that did not see improvement,” Bidabe says. “What usually happens is that they’ll run a little pilot program, start with a few kids and see what happens. Then, by the end of the year, everybody’s participating.”

That’s the plan at Lincoln Developmental Center, where the hallway is filled with the sounds of staff cheering on 24-year-old Matt Nast, who is taking steps with help from the Bidabe-designed mechanical lift walker. At 6 feet tall and more than 140 pounds, Matt, who has cerebral palsy, is a challenge to lift.

This walker raises him from a sitting position to standing. Then supports him as he takes shaky steps. He recently took 10 steps in a row, which had his teachers cheering wildly.

“Before this, he hasn’t been in a vertical position in I don’t know how long,” says physical therapist Kathy Pickard, who took MOVE training with speech therapist Jennifer Krater. “Matt is such a social person. Just having at eye level with us is so good for him.”

Lincoln staff anxiously are awaiting a second batch of MOVE equipment, paid for by a grant from Ronald McDonald Charities.

Before MOVE, many of the students here spent much of their time on the floor, reclining on padded mats, Krater says.

“Now some are taking their first steps, after maybe 18 years of never taking a step before,” Krater says. “Just imagine that.”