Crafting Small Miracles and Gigantic Smiles: Kluge Children's Rehabilitation Center

by local writer and Charlottesville dad Brian Cohen

Barely visible on a small knoll behind a stand of trees, a unique fix-it shop crafts small miracles and gigantic smiles. Commuters along Ivy Road rarely notice the unassuming facility's sign. So, to enlighten travelers who zoom past briefly wondering what happens at the top of the little hill, as well as parents who search for their sick or injured children's joy, we present: What Happens at Kluge Rehabilitation Center?

Professional staff and parents team up to help sick and injured children attain the independence and competence necessary to function in society. The center (known by staff and parents as KCRC) is not only remarkable for its results. It is also unique for its family-centered approach and association with one of the nation's premier children's medical centers.

And the kids never want to leave.

Several highly qualified ambassadors of good will greet visitors every day. Life-sized, stuffed bears stand immediately inside the entrance. Around the corner, Patricia Hulptman, childcare teacher supervisor (known as Miss Patty by staff and patients), invites families into the cheerful, well-lit, high-ceilinged atrium to play with toys and computers or paint, draw and knead Play-Doh. But the atrium is more than a waiting room; it serves as a reward for children after their therapy sessions.

"Children look forward to it, and do not want to leave," said Miss Patty. Besides experience in working with physically, mentally and emotionally disabled kids, Miss Patty speaks Arabic, Italian, Spanish and American Sign Language (the latter is often used to communicate with autistic children). Miss Patty said she is also Virginia's best face painter, a claim verified by a highly placed source at the center, whom once had a blue dolphin portrayed on her right cheek.

In the horticultural area outside, Beth, 12, winced from pain as she potted a plant with help from therapy assistant, Catherine Muller. Muller said manipulating soil, plants and pots helps flex Beth's arm and shoulder muscles. Now in her third week as an outpatient, Beth said, "I knew a person who came here, and he really liked it. He didn't want to leave." Shortly after the pain subsided, Beth said, "It's therapy, but it's fun therapy."

In a place that succeeds in shedding the cold, formal hospital institution for the compassionate, casual sanctuary, physical and occupational therapy specialists play an intimate and critical role in giving patients the ability to function in their worlds.

"Occupational is defined as what you do with your time. Vocational is what you do on the job," said Ruth Goldeen, occupational therapist at KCRC. "For kids, it's how they dress themselves, bathe themselves, go to school, do their homework and other things to get along at this time in their lives."

Goldeen and two other physical therapists were working with Seth, 2 1/2, in KCRC's gym. Seth, connected to ventilator and feeding tubes, was learning to pilot a motorized wheelchair almost three times his size. Gina, his mother, bent down to Seth's eye level a few feet in front him and encouraged him to come to her. To the delight of Mom and staff, Seth pushed his joystick forward, left and right, in hot pursuit of Gina's outstretched arms.

"This is the first independent mobility he's had in his life," said Gina.

As Janet Allaire, manager and clinical assistant professor at KCRC, leads this writer on a tour, it becomes obvious that great effort is expended to create as unhospital-like an atmosphere as possible. Children's artwork, much of it excellent, cheers up the hallways. In the motion analysis and motor performance laboratory, where cameras, sensors and computers measure a child's gait, Smurfs and Sesame Street characters smile from posters. Squeaky, squeezable, fuzzy, cuddly, musical, electronic, computerized playthings are almost everywhere in KCRC, used during and after therapy.

Kids will be kids. Swings are near the greenhouse, and so is Mr. Sprinkles, the resident bunny. Although a safety harness is primarily used to keep children on a treadmill in the motion analysis lab, it also serves another purpose. "At the end, they all like to swing on it," said Marc Gilgannon, physical therapist.

Inpatient services

"Rehab to kids means being the best they can be," said Allaire. "It doesn't matter if you're tipped in your wheelchair. You should go to school and do homework. That's what matters. Recreational, physical, emotional, cognitive…, it's in every domain. The process is very integrative."

More than 550 children are admitted to the inpatient unit's 19 beds each year for an average of over 9 days. Ten of those beds are dedicated to rehab (injured patients), then remaining nine to recovery from surgery, weaning from ventilators, and other acute cases. Just some of KCRC's pediatric specialties include developmental pediatrics, respiratory therapy, orthopedics, dentistry, nutrition and dietary services, prosthetics, social services for patients and families, speech and language pathology, plastic surgery and school.

KCRC offers inpatients rehab programs for acquired brain injury, spinal cord injury and encouragement feeding. Allaire said the feeding program for weaning children off feeding tubes has the highest demand and is promoted by parent-to-parent networks throughout the country. "Many kids who have had feeding tubes for their first three years of life don't like the sensation of swallowing their food," said Allaire. A feeding tube meal takes as long as 90- minutes to complete.

Under various circumstances, KCRC encourages parents to stay with their children. One adult may sleep by the child's bedside, since up to four patients share rooms. Restrooms, showers, lockers, refrigerator, microwave, coffeemaker and dinnerware are available at all hours. KCRC even provides laundry facilities. Parents can also stay up to 30 days on the grounds at Commonwealth Court, a former hotel with 10 rooms for families. Each room has two single beds, one cot, cable TV, phone, small refrigerator, microwave and bathroom.

Off grounds, families can reserve rooms at the Ronald McDonald House, two miles from KCRC with limited shuttle service to the center. In addition, the University of Virginia Medical center provides a 24-hour lodging and transportation service.

A typical day for inpatients begins between 7-8 a.m., when children get dressed. Then they go to school rooms (to keep up with their usual classmates), treatment and therapy sessions, meals in the cafeteria (parents are encouraged to spend mealtime with their children), playing on the adaptive playground and in the gym, swimming in the indoor pool, growing their own gardens in the greenhouse (plants are sold to the staff at discharge), and participating in planned recreational and social activities. Each child has an individualized schedule.

Eligible patients go on supervised outings to sports events, malls, movies, fishing and restaurants. The staff uses such trips to watch toddlers through teens interact and teach them skills to help them reintegrate with the community. Therefore, parents are not invited to these outings.

Discharge planning begins at the day of admission. Evaluation is based on a standardized test given at both times, and improvement is charted for three months after discharge. Categories include self-care, mobility, locomotion, communication, social interaction and sphincter control.

Outpatient services

Every year, specialists from many disciplines work together in KCRC's 26 clinics to aid 14,000 children. The vast majority of these children are treated on an outpatient basis for developmental disabilities, traumatic injuries and chronic illnesses. The conditions include muscular dystrophy, cystic fibrosis, cerebral palsy, mental retardation, autism, myelomeningocele, genetic syndromes, orthopedic handicaps, feeding and swallowing problems, communication disorders, spinal cord and acquired brain injuries, and diabetes.

Biomedical engineers, physical therapists, computer technicians and orthopedic surgeons use the center's motion analysis lab to measure and assess children's walking problems and design treatment. Other specialists regularly consult in the construction and fitting of therapeutic equipment. They adjust wheelchairs for the child's growth and give chair and seating evaluations, in addition to carrying out regular maintenance. Some professionals give bowel and bladder training. Others provide therapy to overcome speech and language difficulties.

KCRC provides therapeutic recreation services for outpatients, as well as special services for the family. It holds sessions in adapted aquatics for all swimming skill levels and therapeutic aquatics. The staff also provides recreational program and camp consultation (for example, amputee camp). Families can take advantage of group and individual psychotherapy sessions and join support groups.

Past, present and future

KCRC's history is more indicative of its health care approach than its infrastructure. Janet Allaire said the original residential property was comprised of 17 acres and one house. In 1957, fate played her hand, and the owner lost the place in a poker game. Fortunately, the new owner quickly donated it to the state. Later that year, the University of Virginia established a children's rehabilitation center there to care mostly for children with cerebral palsy. "Some children there had [tuberculosis] of the spine," said Allaire.

But conditions were primitive by today's standards. "Children were moved around in wooden wheelbarrows," said Allaire. Four to five children shared a room.

In 1970, the university began its team approach at the center. Parents and staff collaborated to achieve goals in a time when doctors usually dictated treatment to families. Staff from many disciplines also contributed input tailored for each patient. The facility opened a pool and gym, and started a school for inpatients.

Allaire said by the late 70s or early 80s, the center developed its collaborative approach into its current family-centered care policy. The family was formally recognized as a key component and consultant in the child's rehabilitation or recovery, because it remained constant as caregivers changed. Programs also developed more flexibility than ever to compensate for the families' varied dynamics and needs. In 1988, the rehabilitation center acquired its current name, following Mr. and Mrs. John Kluge's large research grant for children's disabilities. "There were a lot of good teachers but not enough research," said Allaire. In the 90s, the practice became evidence-based. Instead of merely describing a child's walk or gait, doctors began measuring it using cameras, sensors and computers.

Allaire said future expansion has been preliminarily slated for completion by 2007. However, no one has decided on the final design. "All subspecialties of pediatrics will be under one roof," explained Allaire. "The integration of teaching, research and clinical care will be key, but it will be on a broader scale." Broader scale meant KCRC would staff more physicians, treat more children and serve different populations of kids in the near future.

Allaire understood why many locals do not know what KCRC does. "We're known more across the nation than in Charlottesville," said Allaire, "because of published physicians and parent-to-parent networks via the Web and associations." Allaire said KCRC is one of a dozen similar facilities in the country, but it owes its distinction to a community of scholars and researchers. UVa sends 340 students each year to train at KCRC. Another 24 colleges and universities, 14 outside Virginia, send 80 students annually.

So now you know what happens at that little place on the hill. KCRC accomplishes its goal of inspiring confidence, teaching self-reliance and minimizing the effects of conditions in children by utilizing science, compassion, financing and devotion. It is a place that displays the ironic: without the misfortune of the most innocent we would never see the finest efforts of human beings.

All this just to make sure that kids will be kids.

*In accordance with the wishes of the University of Virginia Children's Medical Center, surnames and diagnoses of patients and families will remain confidential.

Brian Cohen is a former investigative reporter, now freelance writer and publisher of The Whistle, a western Albemarle newsletter and Web site. He is also a stay-at-home dad who is loved by children and feared by telemarketers.

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