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By KRISTA CONGER Think back to your first day of high school after a lazy summer vacation. Expectation danced with trepidation as you and your classmates girded yourselves for academic success with spiral notebooks and freshly sharpened number 2 pencils. The new teacher was tough, you’d heard. And calculus? Even the word was scary. Now imagine instead that, while you were frolicking in the sun, your classmates — every one of them — had been attending three months of summer school. Their heads swivel expectantly when, on the first day of class, the new teacher asks you to come to the board to calculate the area under a curve. And no one understands why you’re not up-to-speed.
Kayla Felix (left) has been through Packard’s H.E.A.L. program to help her return to school. She’s shown with program coordinator Jeanne Kane after getting her face painted during last weekend’s neuro-oncology picnic. Photo: Judy Modderman Sweating yet? We’re not finished. Let’s throw in a few more curveballs: You look different from your classmates. Maybe you have no hair, or you’ve put on or lost a lot of weight. Former friends avoid you and teachers don’t have time to help you catch up. It seems inevitable from that first day that your grades will fall and you’ll dread each day. These are some of the hurdles facing chronically ill or recently hospitalized students. Without help, they may be unable to cope with the memory loss, fatigue and cognitive changes that are common by-products of many medical conditions and their treatments, not to mention prolonged or frequent absences from class. Now a new program at Lucile Packard Children’s Hospital called H.E.A.L., or Hospital Educational Advocacy Liaisons, aims to smooth the often rocky transition from hospital to school. "School is such an important piece of a child’s life," said program coordinator and education specialist Jeanne Kane. "Back-to-school problems can affect a child’s self-esteem and permeate a family. In fact, some parents have told me that their child’s return to school is more difficult than the illness itself." Every year more children survive life-threatening diseases or live with chronic medical conditions. As part of the patient and family support services at Packard Children’s Hospital, Kane estimates she has helped more than 80 patients since the program’s inception in May. Most had cancer (radiation needed to fight the tumors can leave lasting cognitive effects) but traumatic brain injury, epilepsy, sickle cell disease and diabetes are among many other conditions that can leave a child too tired, confused or forgetful to perform well in school. Misconceptions by teachers and friends can lead to isolation and further scholastic backsliding. In response, Lucile Packard Children’s Hospital teamed up with the Lucile Packard Foundation for Children’s Health to devise H.E.A.L., which works closely with the Children’s Health Council’s Returning to School program. "As pediatricians, we recognize that just treating the child’s disease is not enough," said Packard Children’s Hospital chief of staff Harvey Cohen, MD, PhD, the Arline and Pete Harman Professor for the Chair of the Department of Pediatrics at the School of Medicine. "We want children to also be successfully integrated back into their environment. A successful school re-entry is a critical component of our care for children with trauma and various diseases." Kane, who will be joined this month by clinical psychologist Debbie Bonardi, PhD, can help parents navigate the complex thicket of state and federal laws governing who qualifies for special help. Potential accommodations run the gamut from intensive one-on-one tutoring to simply allowing a child to sit at the front of the class or giving them a little extra time to complete tests or homework or an extra set of books to keep at home. "A lot of time families don’t know what they’re entitled to," said Kane. "Physicians should quiz parents about the child’s re-entry to school by asking specific questions: Is the child adjusting well? How are her grades?" Red flags may indicate that H.E.A.L. can help with baseline testing of memory and attention, perception, coordination, language and personality — all areas that can be affected by illness. Once specific problem areas are identified, Kane may visit the child’s school to observe the educational setting and recommend changes. She may discuss the child’s school performance with teachers, communicate with the school nurse about medical concerns and, if desired, give presentations to the child’s classmates to demystify the illness and build acceptance and support. Kane’s efforts are vital supplements to over-worked teachers and dwindling numbers of school nurses more used to handling traditional learning disabilities. "This is really a new field," said Kane, "and we’re just starting to understand the true needs of these kids. They’re coming back to school with special needs, and, in many instances, schools are not quite sure how to deal with chronically ill children." Compounding the problem, the children can grow frustrated when they reflect on life before their illness. "Most of them didn’t have academic problems before they were diagnosed," says Kane. "A lot of these kids remember being able to complete assignments quickly and memorize things easily."
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Lucile Packard Children’s Hospital Packard funds biotech core at School of Medicine (10/1/03) Packard
tests radiation therapy that eliminates brain damage risk in
children (12/12/01)
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Stanford Report, October 8, 2003
