Treating Disorders, Transforming Lives

As a boy and his mother arrive to visit the Knights of Columbus Developmental Center at the SSM Cardinal Glennon Children’s Medical Center in St. Louis, a gentleman at the entrance gives Alice-in-Wonderland directions: “Down the hall, hang a right, go through the double doors, zig-zag, go down a ramp, take the elevator up to the fourth floor; the center’s in the corner.” The little boy hesitates, then agrees to climb into a wagon to make the journey. He holds on tight, his eyes scanning rapidly as his mother pulls him down corridors, into an elevator and through the door of their destination.

By this time next year, visitors like the boy and his mother won’t need a wagon to get where they’re going. The center will be three times bigger than its current location, occupying the entire second floor of a separate, newly renovated building.

The Missouri Knights of Columbus raised the money to open the developmental center in 1981 because there was no place in the region dedicated to children with intellectual developmental disorders. It started small, staffed by two developmental pediatricians and a secretary. Then it spilled into the hallway and annexed offices in the psychology department. Today, the center has experts on staff in psychology, psychiatry, pediatric neurology, speech and language therapy, occupational therapy, nursing, social work, education and research. These professionals can make an autism diagnosis as early as 18 months of age. And they are now evaluating and treating almost 2,000 children a year.

The Knights continue to support the center and watch over its needs. This spring, they presented $202,000 to the Cardinal Glennon Children’s Foundation for the much-needed expansion.

HOPE FOR FAMILIES

A new spacious waiting room next year will surprise former patients like Victoria Metzger, if she comes back from college to see the doctors who saved her sanity more than once. When she started coming to the Knights of Columbus Developmental Center as a second-grader, she had to smoosh onto her mother’s lap while her older sister, Ashley, sat cross-legged on the floor.

The family pediatrician had simply pronounced Victoria “a difficult child” — just as he did with Ashley. Then their father, Curt Metzger, went to a K of C state convention where a doctor spoke about attention deficit hyperactivity disorder and thanked the Knights for their support. Almost every symptom the doctor listed held true for two of the Metzgers’ four daughters.

“I went home and told my wife, and she said, ‘We’ve got to call this center,’” Curt recalls.

The Metzgers had been trying to figure out why Ashley, who was going into seventh grade at the time, struggled immensely at school and would pull out her hair, pick at her skin until she had welts, and even bite herself. Victoria, meanwhile, was already showing signs of impulsivity, trouble learning, and temper tantrums — complicated in her case by anxiety and depression.

Curt had been a Knight since 1989. He had watched the Order translate the Catholic faith into practical, charitable action in the community, and he knew its concern for protecting families. But he never expected it to transform his own.

“The doctors at the center started teaching us,” says Curt, “so we could change the way we did things, give our daughters a chance of feeling like they were living a normal life instead of feeling so confused.”

Victoria remembers being “kind of freaked out” when she was first told she was going to a center for treatment. “I thought there would be pins and needles and I was going to get stuck. But it wasn’t as bad as I thought. I remember a yellow room.”

She confides that she hated going to school because of her poor academic performance. She would cling to her parents or tell the bus driver that she was sick. She would also pick fights with her sister.

“But once I started my medicine I became a totally different person,” says Victoria, whose reading skills climbed to grade-level once her anxiety and depression came under control.

Today, Victoria is preparing to graduate from high school and start her college career. A far cry from the troubled student of her past, she received the Most Improved Senior Award for her class and plans to study criminal justice.

DIAGNOSING AUTISM

In 2007, the Knights of Columbus Developmental Center was designated a Missouri Autism Center, and it has helped the state develop screening and treatment guidelines for this spectrum of disorders.

Children with autism used to be thought of as locked in their own world, cut off from human communication and refusing human contact. Now doctors understand autism as a complicated array of processing disorders, causing the brain to buzz with intrusive stimuli that children can’t sort out, pattern, or make sense of. Children with autism are hyper-aware of a jumble of details, yet they are often clueless about the big picture, missing social cues other kids integrate automatically.

“Autism is now understood as a neurodevelopmental disorder,” says Dr. Rolanda Maxim, the center’s medical director. “With early intervention, we can actually reverse many symptoms. The brain can create new connections between nerve cells, and that will help the child learn, communicate and interact.”

The Centers for Disease Control and Prevention estimate that, on average, 1 in every 110 children has an autism spectrum disorder — although in some studies, the prevalence has measured as high as 1 in 80. Boys are four times more likely than girls to be diagnosed with autism.

The number of children with autism spectrum disorders is increasing — either because prevalence is increasing, because diagnosis is improving, or both. “Autism is definitely a genetic disorder,” Maxim says. “Every day we are identifying more genes that are linked to autism.” Those genes only create a predisposition to the disorder, though. “There are certain triggers in the environment,” Maxim explains, “and we have only identified a few of them.” Immunizations, she adds, have been dismissed as triggering factors.

To evaluate children who might have an autism spectrum disorder — such as Asperger syndrome or “pervasive developmental disorder” — the center has developed a four-hour, multidisciplinary evaluation that is incredibly thorough and produces increasingly accurate results.

“Autism is a very complex disorder, and therefore it is important for families to have a multidisciplinary team of experts to support them,” says Colleen Dolnick, the center’s family resource specialist. She explained that the center’s evaluation includes speech and cognitive tests, a physical exam and a detailed family history. It also includes a structured kind of play to see how children interact and participate.

Dolnick’s own son has autism, and this has helped her talk with parents in a way that the best clinician cannot. She explains, commiserates and gives bewildered parents a checklist of what to do first. She also helps them find support groups and connects them to resources in the community.

“Some kids are hypersensitive to touch; others love hard pressure,” explains Dolnick. “An adult with autism once told me that chewing an apple was like chewing on sandpaper. I tell parents to give a lot of reinforcement and to teach in fewer words and smaller steps, repetitively.”

She looks away for a minute, out the window. “I wish my own son could have come to a place like this early on. To see kids come in and be communicating and interacting with others, whereas before they were nonverbal and lost in their own world....”

A CHANGE OF BEHAVIOR

Sean Turner stares rapt at his portable Nintendo, with his mouth slightly ajar and feet wrapped around a chair leg in the examining room. He is 9, and he could not care less about the grownups’ conversation. He has been coming to the center for nearly seven years.

“He’s my fourth child, and he just — he didn’t smile like the other kids, he didn’t have eye contact like they did,” recalls his mother, Kathy Turner. “He did a little hand flapping, not a lot. He got obsessed with things, like fire extinguishers.”

The center’s autism evaluation gave the Turner family a plan of action, and six years later, Sean’s life has changed dramatically: “He went from a little boy who was not that social to a boy who doesn’t know a stranger,” Kathy says.

Before coming in to the exam room for Sean’s appointment, Dr. Kimberly Twyman, a developmental pediatrician, spends a few minutes in her office, listening to a pediatric resident’s report. “Seems like there have been some pretty decent improvements in his aggressive behavior, his impulsivity, his hyperkinesis,” the resident tells her. “He’s been using more profanity recently, he’ll still have outbursts, at times he’ll try to run away.”

In the exam room, Twyman asks Kathy how much the hyperactivity is affecting Sean on a daily basis — is it interfering with his schoolwork?

“He gets almost straight As.”

Twyman’s face lights up. “I always knew he was a smarty-pants!”

What’s really helping, Kathy adds, is that Sean has been working with a counselor on identifying emotions. Kathy describes a breakthrough: “He got upset with me at a cafe because he wanted what I had ordered. I said, ‘You can have a bite.’ He wanted another. I said, ‘No, you will have to order it for yourself next time.’ He stood up, and I thought, ‘Oh, here we go…’”

Instead of spiraling into a tantrum, Sean blurted, “But — but — I’m jealous of you!”

Kathy was so excited she wanted to tell everybody in the cafe. “I said, ‘Oh my gosh, buddy, that’s awesome! You just identified a feeling for yourself!’ And I gave him my sandwich.”

A SPACE TO SERVE

Missouri State Deputy John Appelbaum chairs the national board of visitors that will oversee the center’s expansion. “It kept getting moved as the hospital grew,” he explains. “Now they’ll have their own facility, brightly colored and spacious, with separate parking and a separate entrance.”

And the staff will have room to breathe and work.

At the moment, Dolnick and two nurses share an office. They have learned to keep their voices low when all three are on the phone at once, discussing complicated, sensitive material with a patient’s family or trying to find a dentist who understands how to treat a child with sensory issues.

In addition to more office space, Maxim, for one, can hardly wait for the new observation rooms, which will be used to decipher a child’s status, assess progress and teach. “It’s crucial to observe the child’s nonverbal communication,” she explains. “We have kids who don’t have words.”

Observing a child’s eye contact and facial expressions, Maxim says, is invaluable in making a diagnosis. “A child who doesn’t have the language but tries to give a toy to his mom, looks at her — that’s a child with a language delay. A child that screams, doesn’t point, doesn’t look at the mother, has no words” — that’s autism. And when that child begins treatment, Maxim often calls in her most trusted colleague, Higgins the dog.

“The children use more words around Higgins. They smile at him more,” she says. “They will even make eye contact with him when they won’t with a human being. Because dogs give unconditional love, they are not so threatening.”

An energetic and obedient goldendoodle, Higgins forgives tantrums. He submits to physical exams so Maxim can show a child what she will do. He trots alongside the child on trips to the lab for bloodwork. Maxim even uses dog therapy to ease the fears of children terrified of health care providers. “We know of nothing like it in the country,” she says.

The new facility will provide more space for Higgins to interact with the children, and his crate will no longer be jammed in a corner of the conference room. The new examining rooms, meanwhile, will be big enough to accommodate more family members and specialists. Maxim is also glad to have room for new, evidence-based programs like PEERS, which teaches social skills to teenagers while their parents get coached on the material in another room.

Right now, there is a single hallway crowded with patients and providers. When everything spreads out, kids won’t have to endure elbow-jostling strangers and unpredictable noise. Physicians will have offices removed from the traffic of the central hall. There will be a separate exit and check-out desk.

And the grown-ups will be able to work in the kind of peace and order their young patients crave.

 

Jeannette Cooperman is staff writer for St. Louis Magazine and the author of several books. She has won national and regional awards for her reporting on health care and social issues.