SSM Cardinal Glennon center eases stress for kids with developmental disabilities

February 1, 2014


When Parker Lim, 7, of St. Louis began losing his speech before his second birthday, his parents, Dr. Michael and Amy Lim, were grateful to have a resource like the Knights of Columbus Developmental Center at SSM Cardinal Glennon Children's Medical Center to turn to for help.

And while Parker's medical evaluation there led to what his mother describes as a "devastating diagnosis" — autism — the intervention plan his team of doctors and therapists put into place has been "an incredibly positive experience," she says.

"The Knights of Columbus Developmental Center is the one place we can go that sees Parker as a whole child and can tie all the issues he struggles with — processing auditory, visual, sensory and tactile information — together. Everyone there is so warm and friendly that our visits feel almost like family time," she says.

Until recently, though, the Lims' actual trip to the center every three months was far from family-friendly. Its location — an overcrowded, 4,300-square-foot office space on the fourth floor of the hospital's north tower — was a city block away from the medical center's main parking facilities.

"Families were required to cross a couple of lanes of heavy traffic, go through security, negotiate long hallways and take an elevator up to the center. For children who are easily overstimulated, that journey through unknown territory could be very traumatic," says Dan Buck, executive director of Cardinal Glennon Children's Foundation.

Danielle Cooney, left, observes as her 10-year-old son Jourden Hopkins plays host during a therapy session with psychologist Sarah J. Grafeman, center right, and Dr. Rolanda Maxim, medical director of the Knights of Columbus Developmental Center at SSM Cardinal Glennon Children's Medical Center in St. Louis.

Easy does it
Now, thanks to the opening in May of a new 11,000-square-foot, $1.5 million facility in a refurbished building on the medical center campus, with its own surface parking lot, families with children affected by autism and other neurodevelopmental disorders can easily access the professional help they require to improve long-term outcomes.

"Parker just had his first appointment at the new center; it's fantastic!" says Amy Lim. "Not only does it eliminate all the safety issues with parking lots, traffic, ambulances, congested halls and elevators, but it is spacious, calm, full of natural light and resembles a playroom much more than a medical clinic."

Playful design

Indeed, the exterior of the new Knights of Columbus Developmental Center is decorated with Mondrian-type building blocks of primary colors. Inside, the waiting room walls are festooned with photos of hot-air balloons. Examination rooms feature tables disguised as fire trucks, race cars, trains and planes, which any kid would find irresistible to clamber up on. A treasure chest is chock full of toy prizes children can collect at the end of an appointment. Best of all, a service dog, Higgins, visits regularly to enhance therapeutic sessions.

Less obvious are the innovations requested by Dr. Rolanda Maxim, medical director of the center and associate professor of pediatrics at Saint Louis University School of Medicine, and her team. There is no medical equipment on the walls in exam rooms that could frighten young children, for example. There are rooms with double mirrors so clinicians and family members can observe behaviors in therapy sessions.

There is also room for "move-to-communicate" exercises, where children complete physical activities for sensory improvement. And there are spaces for peer programs where teens learn about social skills through group interactions.

One-stop shop

"We aim to be a one-stop shop for children from birth to 21 years of age with developmental disabilities that range from speech and language problems to intellectual disabilities and autism," says Maxim. "Often these children require a true team approach that includes developmental pediatricians, child psychologists and neurologists, geneticists, clinical psychologists, speech pathologists, occupational therapists, nurses and resource specialists that help families advocate for school services."

This kind of multifaceted approach, which requires a staff of 25, is a far cry from the treatment offered at the Knights of Columbus Developmental Center when it opened its doors in 1981. Indeed, Maxim recalls that when she arrived in 1998, the facility had just two developmental pediatricians and a support person.

Increasing demand

"Our knowledge of how to diagnose and treat various developmental disabilities has greatly increased, and so has the population we serve," she says.

According to the Centers for Disease Control and Prevention, the number of children diagnosed with autism spectrum disorders in the U.S. has increased from one in 150 in 2000 to one in 88 in 2008, the latest data available. In addition, one of every six children is now diagnosed with a developmental disability, be it attention deficit hyperactivity disorder, cerebral palsy, Down syndrome or others.

Whether there is actually a greater prevalence of these disorders or whether parents, teachers and professionals are simply better able to detect signs of, say, mild autism, is debatable, says Maxim, but the need for treatment centers like the one at SSM Cardinal Glennon is not.

"In 2007, the Knights of Columbus Developmental Center was designated a Missouri Center for Autism — one of only three in our state — by the Department of Mental Health. Yet we were able to see just 180 children a month, with wait times of three and a half months for appointments," says Buck. "Since the new center opened, we have been able to see more than 400 children a month and the wait time is down to approximately 60 days."

Banking on Tootsie Rolls

The new center, Buck says, was made possible by "an exceptional partnership" with the Knights of Columbus Columbian Charities Missouri State Council. "This mission involved a whole lot of guys in yellow vests peddling Tootsie Rolls, along with the Children's Miracle Network Hospitals of Greater St. Louis and local private foundations, all working together to make a huge difference in the lives of many, many families," he adds.

One of those families, Tom and Carol Backes of St. Thomas, Mo., says that even though their son, Paul, now 16, no longer needs some of the kid-friendly features offered at the center, they still greatly appreciate its convenience and spaciousness when they come to St. Louis to check in with Maxim on educational resources, medication management and the like.

"Paul has been coming to the center since he was 3 years old; he has an autism spectrum disorder but is high-functioning," says Carol Backes. "It used to be so stressful to get him up at 4:30 a.m., drive three hours, navigate a large hospital situation, sit in a cramped waiting room, have an appointment and then drive another three hours back home."

Though the driving distance to the new center hasn't changed, the atmosphere is much more pleasant these days, she says.

Soothing space

"The facility is much larger, so the waiting room is much calmer. And there is much more privacy and confidentiality to our visits with the doctor and resource specialist," she says.

Best of all, she adds, despite its bigger quarters, the center has managed to retain its "welcoming" atmosphere. "When we come and see many of the long-time staff members here, we still feel like this is our second home," she says.

For a pat and a rub, Higgins offers unconditional love

Without a doubt, the most popular staff member at the new Knights of Columbus Developmental Center is 75-pound Higgins, who has a cold black nose, a long tail and a personality that just makes you want to hug him.

Which is exactly the point of having the 8-year-old, goldendoodle service dog at the SSM Cardinal Glennon Children's Medical Center facility.

"Dogs give unconditional love," explains Dr. Rolanda Maxim, medical director of the developmental center. "For kids with autism who struggle to communicate, they can be great companions."

Betty Miller, a nurse who is one of Higgins' handlers, says the well-behaved dog helps kids relax during appointments and teaches them how to socialize.

"Many children dislike physical exams and lab work, so Higgins can both distract them and help lessen their anxiety," she says. "But kids with autism spectrum disorders are especially sensitive to tactile sensations, so petting Higgins can really help calm them."

Such children may also dislike having their nails clipped, their hair cut and their teeth brushed. Sometimes, Miller says, they will practice cutting Higgins' hair to desensitize themselves to the same procedure.

It also can be less scary to learn to maintain eye contact or take turns when a companion has four feet and fur. "Higgins teaches kids how to play," says Miller.

And in a child's world, where work is play, that's a very important role. In fact, Maxim often gives children homework to practice on their own pets after a dog intervention clinic at the center. (Higgins, who was trained by a Missouri inmate as part of the nonprofit Canine Helpers Allow More Possibilities, retires to his host family's house.)

"I might have a child test out sleeping with an animal in bed for comfort, or have them practice conversation skills, following directions or learning to pay attention with the help of a dog," she says.


Copyright © 2014 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2014 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.