Boston Sunday Globe October 27, 2003
Education, The Chalkboard

Schools learn to help pupils when parent is ill

—By Laura Pappano

Days before the start of school last year, as T.J. Rufo raced to finish his summer reading, his mother was diagnosed with breast cancer.

One of the assigned books, "So Far From the Bamboo Grove," is a true story about a Japanese family at the end of World War II forced to embark on a terrifying journey to survive. The subject wasn't cancer, but reading it when he did was overwhelming to T.J., 13.

"I just broke down the week before school and started bawling," said the Natick eighth-grader.

Having a parent diagnosed with cancer, like any serious illness, can mean that the comfortable routines of school life are suddenly intermingled with trips to doctor's offices and chemotherapy infusion rooms. Talk about test results no longer focused on math or spelling, but on scans, blood work, and the size of a tumor.

School's play a critical role during such tumultuous experiences, say educators, families, and medical specialists. But teachers say they are often unsure exactly how to help.

"When it comes right down to it, teachersand [school] nurses are on the front lines," said Harriet Berman, program director for The Wellness Community in Newton, a nonprofit group that supports cancer patients and families.

The Wellness Community and the Hurricane Voices Breast Cancer Foundation, a national advocacy group in Newton, are sponsoring a free conference for educators Nov. 4, "When a Parent Has Cancer: Strengthening the School's Response."

Berman, who was diagnosed with breast cancer 4-1/2 years ago when two of her children were still in school, and Lois Egasti—a breast cancer patient, mother of a 9-year-old, and founder and president of Hurricane Voices—said they hope the conference will help educators tune into what families face when a parent is ill.

Karen Fasciano, associate program director of The Wellness Community, said the idea for the conference came from parents in support groups who felt "there were all these things schools could do better."

Erica Wilsen, a math teacher at Lincoln-Sudbury High School, was a teenager when she lost her mother to lymphoma.

Teachers are hungry for guidance, said Wilsen, who is helping to start a group at the school for students coping with loss.

"I can't tell you how many times I have heard from my colleagues, 'What can I say? What can I do?'" she said. "There is a lack of information as to how to handle these kinds of situations."

During her mother's illness, there was no response from the school community." Wilsen said. "It was a very isolating experience."

The Parenting Program at Massachusetts General Hospital Cancer Center is working on recommendations for teachers, contending that students have different needs at different ages, said Dr. Paula Rauch, the center's director.

"From where I sit, you see so many different kids, so many different families, that there is no one right approach," she said. Among younger children, Rauch says, the chief concern might be how the illness has disrupted the way that parent cares for the child. Sticking with a school routine may help.

Older students often appreciate having a teacher let them know privately that modifications can be made, such as allowing more time to complete an assignment, Rauch said. And all "children should be able to talk about it, but on their own schedule," she said.

It's also common for adolescents to feel angry at the way a certain teacher responds. "Kids will cut a lot more slack to the teachers they like," Rauch said.

Generally, it's not helpful for teachers to share their own experiences with cancer, especially with children before adolescence, she said. Rauch said it is best to offer teenagers the option not to hear about the experience.

The lack of a single recommended approach can make it intimidating to reach out to students and families facing a serious medical diagnosis. Chuck Cormier, principal of Plymouth River Elementary School in Hingham, said several parents at the school have been diagnosed with cancer and other serious illnesses in recent years. Although he wants to help and has, Cormier said, he is uneasy each time he offers.

"You have these skills you would like to use to help someone out, but you are nervous about using them," he said. "Will it be helpful or will it be stressful?"

That is the difficult line educators must walk: Will reaching out make students feel that they have a supporter, or will it shatter the sense of safety and normalcy a school environment can provide?

Sometimes, students take the initiative. Last year, Newton North High School students started Team Pushing Against Cancer Together (or Team PACT). The group raises funds, holds a Cancer Awareness Day, and hopes to get updated cancer books for the school library.

It also provides a positive outlet forstudents as they grapple with a parent's medical problems, said Rebecca Kuzendorf, 16, a junior and co-president of the group. Her older sister was a founder of the group.

When her father was diagnosed with prostate cancer in September 2000, Kuzendorf responded by focusing on schoolwork, even taking a math test the day he had surgery.

But just because she didn't want to talk didn't mean she didn't want support, Kuzendorf said. Teachers should "know, but not push it" and be aware that a student "might be tired and not putting in their full effort," she said.

Rufo's mother, Karen, a school nurse at Bennet-Hemmingway School in Natick, said she wasn't sure how much the family should share or how much help they needed after she was diagnosed.

"At first, we were like, 'Do we not tell anyone?' But I thought, 'How can we not tell everyone?'" said Rufo, one of three mothers at the school last year undergoing treatment for breast cancer.

For her family, Rufo said, the school community's response made coping easier. Members of the school's PTO delivered meals every night for the entire school year. "I don't think you can ever repay a community for that," said Rufo, whose daughter Katie, 7, is in second grade at the school.

Over the past year, the family has learned what kind of help works for them, Rufo said. Her son doesn't want to talk about breast cancer all the time at his middle school, but would have liked to have some warning before a class mate made a presentation on breast cancer or before mammograms were discussed in health class.

"It would just be really awkward to have people saying, 'Oh, are you OK?' all the time," T.J. said. "It is helpful for one or two teachers to know and have them periodically check up, but not make a tremendous deal about it."

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Offering support

Dr. Paula Rauch, director of the ParentingProgram at Massachusetts General Hospital Cancer Center, says students at different ages respond differently to a parent's serious illness. Here's the advice:

Ages 3-6

Responses may include behavioral outbursts or becoming anxious about separating from a parent. Teachers should not draw connections between a child's statement and a parent's illness. "If a child says, 'Guess What? My mommy's bald,' you want [teachers] to be interested in that in the same way that they would if a child said "My mommy is getting a new car' [by responding] 'Oh, really?'"

Elementary school

It is helpful for someone to check in with the ill parent to make sure the student is prepared. "For the child whose family is somewhat disrupted at home, it is really important they have the pencils and magic markers and money for the field trip to make it feel like someone is paying attention." Students also are reading books about death, dying, and tragedy earlier. Some of the reading and assignments may hit too close to home or may not. " A kid ought to be asked, 'Is the reading hard?'"

Middle and high school

Teachers need to be willing to reach out discreetly and give teenagers their space. Teachers should allow students flexibility in completing work. But "If you were to take all the expectations away from kids, that isn't helpful either." Overall, "it is a personalized negotiation."

All students

Keep school as normal as possible. Teachers should not greet parents with a long face and ask how they are doing. "You don't want the illness to invade the child's space. You want the school space to be a haven for the child."

Other resources

Kids Count, a free support program at The Wellness Community for parents and children (www.wellnesscommunity.org); Hurricane Voices; American Cancer Society (www.cancer.org); the Children's Room in Arlington (www.childrensroom.org).