Reaching out

Long-running UI center teams care professionals to help patients adapt, thrive

By Jameson O’Neal

The Gazette

IOWA CITY – Zechariah Pitcher was more than just keyed up.

He was always in motion, always taking things apart, going off on his own, courting danger. He slept for only a few hours at a time.

He required so much attention that his parents, Kevin and Connie Pitcher of the small central Iowa city of Sheldahl, feared they were giving his sisters too little.

His pediatrician told the Pitchers that Zech apparently had attention deficit/hyperactivity disorder and offered to write a prescription for a standard ADHD medication.

The Pitchers, determined to obtain a more thorough diagnosis, took Zech to a pediatric neurologist in 2003. After making a preliminary assessment, the neurologist urged the Pitchers to take Zech to the Center for Disabilities and Development at University Hospitals, the place that sets the state’s gold standard for interdisciplinary diagnosis and treatment of childhood disabilities.

Five specialists examined Zech, discussed their findings and gave the Pitchers their unanimous conclusion: He has Asperger syndrome, a pervasive developmental disorder that includes characteristics of autism.

The center arranged for the Pitchers to attend a daylong seminar on Asperger syndrome and related disabilities and directed them to Des Moines-area resources.

“It was really neat to see how well-balanced they were in their approach,” Connie Pitcher said. “They weren’t just concerned about his mind. They weren’t just concerned about his body. They were concerned about the effects on the family. We really appreciated that.”

With the guidance of the center’s staff, the Pitchers have learned to help Zech, now 8, progress toward educational and behavioral goals.

“They’ve given us the tools to know where to go, know how to help him,” Connie Pitcher said. “Now we know what we can do and what we shouldn’t try. He’s an extremely intelligent kid, but if we didn’t know what we were dealing with and were just kind of treating it as misbehavior, we’d all be in the loony bin.”

The Center for Disabilities and Development began in 1948 – a time when public schools were ill-equipped to educate students with debilitating disorders – as the Iowa Hospital School for Severely Handicapped Children.

From the start, the hospital school’s founder, Dr. Raymond Rembolt, emphasized care for the whole child.

“The early history was remarkable in that it was so forward-thinking in providing care across disciplines and coordinated within that same array,” said Dennis Harper, a professor in the Department of Pediatrics at the UI Carver School of Medicine and the center’s clinical director.

“The founders of this place said, `We can’t just try to `fix’ people. We’ve got to train people. We have to facilitate life-skill development.'”

Today, some 200 clinicians, faculty and support staff – employees of University Hospitals or the Carver College of Medicine – serve the center’s clients.

Center teams include physicians and specialists in such disciplines as audiology, education, nutrition, physical therapy, psychology, social work, speech pathology and occupational therapy.

The teams work up plans for treatment to be provided at the center or closer to clients’ hometowns.

“It’s really something that ends up being greater than the sum of its parts,” said Mark Moser, center administrator. “You’re going to effect outcomes that are more beneficial in terms of the child, the child’s family, the local health care provider, the local educator. These issues can’t be addressed well in isolation.”

One challenge shared by varied specialists is listening attentively to clients, even – perhaps especially – those whose ability to communicate is sharply limited.

“The family, the patient, the individual with the disability is really the expert,” Moser said. “The child is at the center of the equation.”

The concentration of specialists makes the center an outstanding place for the treatment of more than 500 rare and complex juvenile disorders.

“This is a low-incident niche,” Moser said. “When you’ve seen one patient, you’ve really only seen one patient. Each patient’s needs are unique.”

The center’s mandate from the state, one of its chief funding sources, is to serve children, but it is free to serve clients into adulthood so long as doing so does not displace children needing treatment.

The center also helps medical students learn to diagnose and treat disabilities. Medical school students in pediatrics, family medicine and psychiatry all serve rotations at the center.

“We give a lot of people a lot of experience,” Harper said.

Another of the center’s missions is to facilitate research, but research protocols ensure that patient care is never compromised.

“We want to be partners in the academic community, but we especially want to make sure the patient is in control,” Moser said.

Using one of University Hospitals’ largest motor pools, center staffers also travel around Iowa to help families and health professionals master the skills needed to care for young people with disabilities.

Staffers also stay in touch with families and care providers via telephone, e-mail and the Iowa Communications Network.

“I spend a lot of my day answering e-mails,” said Dr. Dianne McBrien, an assistant professor of clinical pediatrics and a clinician at the Center for Disabilities and Development. “That’s a big thing to these families – just knowing you can e-mail.”

Many families of center clients communicate regularly with Carney Derksen, the center’s patient/family representative. Derksen advocates for clients, coordinates non-clinical services and introduces families to the center’s resource library.

Like everyone who serves in that role, Derksen is the parent of a child with a disability. That requirement ensures that the representative understands the struggles faced by clients’ families.

Early on, Derksen helps parents come to terms with the grief and disappointment that attend the recognition of a child’s limitations.

“It’s a shock,” she said. “You have to rethink your expectations.” Over time, families find themselves flagging from persistent demands on their patience and attention.

“The challenges of daily life are very wearing on families,” Derksen said. “That’s one of the things I really enjoy about my job: If you give the family all the support they need, it means all the difference in their lives and in the patients’ lives.”

This story was originally published in The Gazette of Cedar Rapids and Iowa City, Iowa, on Feb, 6, 2005.