Half a century of helping kids become independent

There was a time, before there was a Children’s Therapy Unit in Puyallup, that the outlook for kids with special needs was bleak.

If a child had a physical disability, it often was assumed he or she was cognitively impaired as well. If a child needed corrective equipment, it usually meant clunky braces based on designs for adults.

And if parents were overwhelmed with the needs of their child, they often were encouraged to institutionalize a child who otherwise could have turned out to be a productive member of society.

That’s the world therapy student Linda Yates found when she joined the staff of Good Samaritan Hospital in 1966. By the time she left in 2006, not only had the medical community been transformed regarding the way it treated children, but society had as well.

This year, the Children’s Therapy Unit, now part of MultiCare Health System, is celebrating half a century of helping special needs infants, children and teens. The program serves kids from birth to 18.

In 2015, the CTU saw 2,500 patients, who made 40,000 visits.

Kids come to the unit for a variety of issues, but they generally have one goal: living an independent life like any other person.

“I don’t want to be dependent on everyone else for the rest of my life,” said Kristie Gronberg, an 18-year-old who just aged out of the CTU. “I have things I’d like to do, and I’d like to do them by myself.”

EARLY DAYS

Yates came to the hospital as a student intern in the adult rehabilitation unit. There were no facilities for children.

“When I started my career, it was unusual for a child with special needs to be diagnosed before the age of 5 or 6,” she said. “However, a few local physicians were detecting neurodevelopmental concerns earlier than that.”

Shortly after Yates began working at Good Sam, two young children were referred to the hospital.

“The only place to work with them was in the middle of the adult gym,” Yates said.

Adult patients, many emotionally fragile because of strokes or other issues, cried at the sight of the children, one born without arms and the other severely injured in a car accident.

“And it wasn’t good for the kids,” Yates said.

She found a private place to work with the kids. Successes working with them led to more referrals. Slowly the program began to grow.

At the time, many school districts across the nation didn’t allow children with disabilities to attend school. They were sent to institutions, where they were merely housed instead of educated.

“It was assumed that a lot of the kids — if they had a physical disability — were also cognitively impaired, which, of course, is not true,” Yates said.

She said the CTU has always operated under a basic philosophy for each child it treats: “What are the strengths, what are the weaknesses? That takes you where you need to go. You either build up the areas of weakness or you find ways around them.”

Attitudes weren’t the only hindrance to helping children in the early days. The lightweight and adaptive equipment available to people with disabilities today was only a dream in the 1960s.

“Bracing was horrible,” Yates recalled. “It was heavy metal braces attached to shoes that might weigh more than the child.”

In 1975, Public Law 94-142 was passed and guaranteed a free public education to children with disabilities. According to the U.S. Department of Education, the law supported more than 1 million children who had been denied an education.

The education system, the medical community and the public at large began to see and treat children with disabilities differently.

“Our whole focus has been that every child has potential,” Yates said. “Every child has possibilities.”

While the conditions that bring kids to the CTU have stayed the same in many cases (autism, cerebral palsy), in others they have not.

Diseases that could cause lifelong disabilities (polio, measles, scarlet fever, encephalitis, meningitis) are rarely, if ever, seen in the United States now.

“Vaccinations can be credited for that,” Yates said. “Society forgets that. Neuromuscular problems secondary to childhood illnesses are no longer in the picture.”

Yates said that while treatment of kids has drastically improved over the years, the same gains have not been made with adults.

“There are still barriers, and I would love to see some of those removed,” she said, citing employment, transportation and housing.

“If a person has the ability to have a job, they might not be able to live totally independent.”

THE CTU TODAY

Today, the CTU is housed in a 16-year-old, nautical-themed building on the Good Sam campus. Port holes greet visitors on the outside. Inside, a pool shaped like a shell is used for therapy. Windows in doors are placed at a kid-level.

There’s a playground, basketball court, computer lab, and classrooms for professionals and parents.

Director Marianne Bastin, who took over from Yates, oversees administrators and 47 therapists. Children are generally referred to the unit by other providers. Doctors staff an on-site clinic.

Kids still need a separate program from adults, Bastin said.

“They are not little adults,” she said. “They have very specific needs.”

What has changed over the years is the way health care is managed.

“There was not a lot of restriction on what you can do from an insurance standpoint (in the early days),” Bastin said. “See the patient, figure out what they need and do it. There wasn’t a lot of managed care.”

Both managed care and private insurance are cost-conscious, which isn’t necessarily a bad thing, Bastin said.

“Part of it is good,” she said. “We should have been doing this ourselves.”

Bastin has worked in health care since 1978 and seen many advances. Babies born either prematurely or with health conditions have higher survival rates today. But they can have conditions that require treatments and therapies.

Simultaneosly, medical advances can correct deficits that 50 years ago would have had poor outcomes.

“It’s not odd to see a child with a disability in the community whereas it might have been before,” Bastin said. “Children have a right to live as independently as they can.”

About 10 percent of the patients at the CTU are the children of servicemen and women. Many of the military parents are posted at Joint Base Lewis-McChord because it’s a “compassionate reassignment” for military families with special-needs children, based on its access to on-base and community resources like the CTU.

About 60 percent of the patients at the CTU receive Medicaid.

With so many conditions being treated at the unit, the requirements to become a patient are purposely vague: children who aren’t meeting their developmental milestones for whatever reason.

“They’re not following the typical path of development, not meeting milestones,” Bastin said. “When language starts, when children start to sit, when they can feed themselves.”

Sometimes the condition is obvious at birth, such as children with Down syndrome.

But many conditions, even serious ones such as cerebral palsy and autism, might take time to appear. Those two conditions are the most common the CTU sees.

Feeding issues are common across many conditions. Some children can’t feed themselves while some have aversions to smells and texture.

Most of the children at the CTU are in occupational therapy to learn the skills of daily life. The next most popular program is speech therapy, followed by physical therapy.

Children with autism can see a wide variety of therapists, including speech and mental health. Over the years, the number of autism patients has risen, which Bastin attributes to higher overall rates and improved diagnostic techniques.

“We are much better at diagnosing them,” she said.

Just off the lobby at the CTU is a large, two-story group therapy room used for physical and occupational therapy.

Staff members never forget they are treating children.

“The job of a child is play,” Bastin said as she watched several children in therapy. Built into the therapy sessions are the activities of daily life: bathing, dressing and feeding.

Nearby, David Embrey runs the movement lab, where kinematics (movement), kinetics (pressure) and electromyography (surfaces) are studied.

Embrey, a physical therapist for 25 years, also has spent time as a professor, where, it turns out, he had been dispensing incorrect information.

“Half the things I was telling people were incorrect because my eyes were inaccurate,” he said. “Something that happens inside our skin is something we can’t see, but we think we can see. It looks like the muscles are working, but they might not be.”

Cerebral palsy is the top condition he sees.

A series of cameras record the movements of patients as they walk in the lab.

“You can do it with needles, but kids don’t like needles, so we put stickers on their bodies that tell us how their bodies work,” Embrey said.

The lab doesn’t just study muscles but comes up with ways for patients to better use them.

One department at the CTU is dedicated to making corrective splints and braces for children using thermoplastics and neoprene.

Shelf after shelf is filled with plaster casts of arms and legs, each labeled with a child’s name. Those are used to make the splints and braces.

“This holds their hand in place so conditions don’t get worse,” orthotics specialist Jessica Fox explained while working on a splint. “Stretching can happen, and it can stimulate muscle development in the right areas.”

Next door, assistive technology technician Donald Marlatte was adding foot strap to a pair of tricycles. He also adds training wheels and hand brakes to bikes and trikes.

Marlatte has spent 21 years at the CTU. He works on dining chairs, wheel chairs, kayaks and even specialized equipment such as vibrating pacifiers and spoons that stimulate feeding.

He once modified a backpack frame to hold a sousaphone so a boy could march in a band.

It’s all supported by donations.

“Whatever the children need, we come up with it,” Marlatte said.

GAUGE

Gauge Frazell is a human dynamo. When he’s taken out of his wheelchair and set on the floor, the 23-month-old can crawl so fast adults almost have to run to keep up.

His skill at crawling is compensation for the fact that he can’t walk.

Gauge has caudal regression syndrome, a birth defect that affects about 1 in 100,000 newborns.

As in Gauge’s case, children born with the syndrome have underdeveloped lower bodies. He’s missing ribs, can’t use his legs and was born with spina bifida cystica, which required surgery a few days after his birth.

His parents, Stephanie and Jeremy Frazell of Puyallup, have been bringing him to the CTU since he was a month old.

“We were still learning about him,” Stephanie said.

Cognitively, Gauge is a normal 2-year-old. But his physical disabilities require extensive medical care and therapy. He sees specialists in Seattle, as many as five in one day.

“He’s been to appointment after appointment,” Stephanie said.

At the CTU, therapist Juanita Nirider works every week with Gauge on stretching, movement and feeding.

“He’ll be able to do a lot of things that other people do,” she said. “He’ll just need other ways to do it.”

Because Gauge uses his arms more than the average 2-year-old does, one goal during his therapy sessions is to prevent overuse injuries.

Gauge sits cross-legged, giving him the appearance of a wise Buddha. His big blue eyes keenly watch adults. And it doesn’t take much to make him laugh.

“Despite all that he’s got going on, the kid is so independent and so strong,” Jeremy said. “It’s incredible to watch.”

His current wheelchair, which he uses like a pro, has wheels that light up. He’s getting a new chair — in Seattle Seahawks colors.

Gauge’s future with the CTU might be off and on. Like many kids there, he might get to the point where he no longer needs therapy sessions. But as he grows he might return to learn new skills.

He also faces a future of corrective surgeries. For now, his parents are giving him only what’s necessary.

“We want to leave it up to him as to whether he wants surgery,” Stephanie said. “We have a journey ahead of us.”

GRADY

By the time Grady Thompson was diagnosed with muscular dystrophy he was already 9 years old.

“It was not without lots and lots of testing,” said mother, Julie Thompson. “We just couldn’t figure it out.”

Even now, with Grady at age 16, the diagnosis isn’t a sure thing. Still, the family, which includes father Stuart, would like to know.

“It’s not going to change him or what we do,” Julie said. “But it might help other people who come behind us.”

Grady uses a wheelchair to get around the halls of Puyallup High School, where he’s a junior and straight-A student.

Early on his parents knew something was wrong.

“He was just basically very floppy,” Julie said. “The doctors didn’t know what was wrong.”

Muscular dystrophy is a group of diseases in which gene mutations interfere with the production of proteins needed to form healthy muscle. That, in turn, leads to weak muscles.

Grady has been a physical therapy patient at the CTU since he was 3 months old. He’s been seeing therapist Brett Nirider since he was 3 years old, sometimes as often as three times a week.

“It’s so much of a routine to me,” Grady said.

The therapy has helped. Grady couldn’t hold his head up on his own until he was 18 months old.

The therapy helps him maintain his physical strength as well as muscle mass and flexibility.

“Grady works his muscles hard in the course of a week,” Nirider said. “The tightness becomes uncomfortable. My job is to help release some of the tension in those muscles.”

Grady tends to lean his head to one side, and that creates tension and soreness.

After recent back surgery, Grady lost the ability to stand, but he’s regaining it.

“The body gets bigger,” Nirider said. “So if the strength doesn’t keep up with the body mass, then you can begin to lose function.”

CTU has provided wheelchairs and other equipment for Grady. He’s now on his third chair.

“Every part on the chair has to be justified — the armrest, the seat back,” Julie said. “Brett has to write letters and letters.”

“Even the battery,” Nirider said.

Grady has a shower chair specially designed for him. It took a book of letters to the insurance company.

“You have to fight for all these things,” Julie said.

The family donates used equipment to the CTU.

“It goes right back out the door,” Nirider said.

Several years ago Grady started a neighborhood juice and cookie stand. He donated $10,000 of profits to the CTU and several more thousand to the Muscular Dystrophy Association.

Grady plans to major in technology in college. That surprised some visiting Chinese therapists, who assumed Grady would be pursuing a non-academic career.

“They were shocked,” he said.

Last summer Grady spent 11 days at the University of Washington with 16 other high school students with disabilities.

“I learned a lot about independence in life after high school,” he said.

“Mom and Dad were down in Puyallup, sweating it out,” Julie said. “But it was a great experience. He came home from that ready to go to college. And doesn’t want Mom and Dad to go with him.”

TERRON

Terron Wahl wears a camo cap and camo-covered boots. He even has a camo wallet.

“I’m a camo guy,” he said. “I like to be invisible.”

The 17-year-old lives to hunt and fish.

“In this state, if you name it, I hunt it,” he said.

And he does it all from a wheelchair.

Terron was born with cerebral palsy, a neurological disorder that affects body movement, muscle coordination and balance.

He’s been coming to the CTU since he was a small kid.

The junior at Sumner High School drives himself to therapy. His Toyota 4Runner is outfitted with hand controls.

Terron doesn’t look at his disability as a hindrance to what he wants to accomplish in life.

“I’m pretty independent,” he said.

He aims to move out of his parents’ house, become a machinist for Boeing and work on better accessibility for disabled people to hunting and fishing.

“There’s only one handicapped fishing spot that I know of,” Terron said.

Physical therapist Brett Nirider has been working with Terron since he was 13.

“They just really care about who you are,” Terron said of CTU staff members. “They work around how you’re feeling.”

“I learn a lot from working with my kids over a long period of time,” Nirider said. “I can see changes over time, and I learn a lot about the successes as well as the challenges.”

Those challenges can come from physical changes as well as emotional development as children go through puberty and become adults.

“You’ve got to know how far to push them and when to back away,” Nirider said.

In high school, Terron said, he’s just one of the guys. But he does get one privilege.

“They let me leave class three minutes early before everybody else gets let loose,” he said.

This story was originally published April 20, 2016 at 6:25 AM with the headline "Half a century of helping kids become independent."