Efforts Link Sick Children to Classes
Kindergarten teacher Libby Lawler received the bad news just after Christmas last year. Zoe French, the 6-year-old with the wide grin who had lost her mother to cancer only two years before, had been diagnosed with leukemia and would not return to Aquinas Catholic School any time soon.
First grader Zoe
French had to stay at home last year after being diagnosed with
leukemia. But kindergarten teacher Libby Lawler, above, used Web
cameras to link the youngster to her class.
But Ms. Lawler was determined to keep Zoe involved in classes during the long months of chemotherapy that would otherwise isolate the youngster. The question was how.
The answer was a palm-size device called a Web camera, a tool that can beam live video over the Internet. That little device would bring the school to Zoe, and Zoe to the school.
"We found a way to bring down the walls of the classroom," said Sister Dominic Mary Freedman, the principal of Aquinas, located in this suburban community about 20 miles from Washington. "After everything Zoe had been through, we wanted to make sure she felt connected to this school and a part of the family here."
The difficulty of keeping children connected to school and friends when they are hospitalized or homebound with serious illnesses surfaces more often than ever as the prognosis for certain diseases improves. Four in five children diagnosed with some form of cancer, for instance, now survive to adulthood, according to the National Cancer Institute. That's up from 30 percent in 1970. For Zoe and thousands of other seriously ill children, interactive technology offers a potential link to classmates and teachers that may prevent them from losing academic ground—and losing touch.
"Now that medical technology allows kids to live longer, we need to do more for their education while they're in treatment," said Ron Seidman, the chief executive officer and founder of the Talia Seidman Foundation, a nonprofit organization in Newtown, Pa., that provides technological help to keep sick children in touch with their classrooms.
The foundation is named for Mr. Seidman's daughter, who died from brain cancer in 1999 at the age of 7 after battling the disease for more than two years. Mr. Seidman and his wife, Andrea, the owners and operators of a chain of preschools outside Philadelphia, believe Talia's love of learning kept her mind active and prolonged her life.
"Schools should be doing this for these children," Mr. Seidman said. "If you ask the children what they want, they say they want to be in school. Next to the family and home, that's most important to them. It helps the child who's going through hell have some normalcy in their life."
A Stronger Link
Still, Zoe French's experience with interactive classes is rare.
More commonly, children's hospitals provide in-house instruction for children with long-term illnesses, as well as access to some computers. Many hospitals and parents also rely on "cyber schools" and other online educational networks that provide virtual classrooms and instruction over the Internet. And most districts will send teachers to work one-on-one with homebound students for an hour a day, but usually only after a month's absence.
"I think we as educators, mental-health professionals, and medical professionals tend to focus on the illness," said Richard N. Leichtweis, the director of child life/education services at Inova Fairfax Hospital for Children in Falls Church, Va.
"On the list of priorities for these children, school isn't really important," he added. "But from a psychological perspective, it really sends a message when you say to a chronically sick kid, 'You do need to learn algebra because regardless of this chronic illness, algebra is important for a 9th grader.' It's a connection to normalcy for that child."
In Pennsylvania, Mr. Seidman said he's found that many educators are wary of linking their classrooms to the homes of sick children. In fact, it took a year for his foundation to persuade officials in one school district to allow a classroom teleconferencing link for a boy with leukemia.
"A lot of teachers and administrators aren't really into doing this," Mr. Seidman said. "Some can be convinced if it's explained to them."
But the biggest barrier may be cost.
The telecommunications equipment the Seidman Foundation provides for sick students and their schools costs $27,000 for a three-year lease. With limited funds, the foundation has been able to help only one student each academic year. The Seidmans want districts to supply the equipment so their foundation can concentrate instead on helping students and teachers learn to use it.
"If the school districts would buy in to this technology for these kids [who are sick], they could use it for so many other educational purposes," Mr. Seidman argued.
Zoe's teacher in Virginia didn't need convincing.
The child's doctors at Inova Fairfax Hospital told the teacher it was important to keep the girl connected to her normal life to give her meaningful distractions from her frequent hospitalizations and painful treatment.
Ms. Lawler began by placing a photograph of Zoe on the student's desk at school and visiting the girl several times a week to work with her at home. Then, the teacher videotaped the class for Zoe and made a videotape of Zoe for the class. She even put the youngster on a speaker phone several times to participate in lessons.
But Ms. Lawler longed to create a stronger link for her homebound student.
"One day, I was speaking to our principal about what a success the speaker phone was, and I said, 'Wouldn't it be great to have a picture with that?' and the principal said, 'Go for it,' " Ms. Lawler said. "But I didn't know how to go for it. There didn't seem to be many examples out there."
Putting her head together with Zoe's caregiver, Kathleen M. Murphy, Ms. Lawler decided to try a Web camera. With the help of some technologically savvy parents, the teacher connected the camera to a classroom computer and cable modem. The same equipment was installed at Ms. Murphy's house, where Zoe spent most of her days.
Private individuals donated the $120 Web cameras, Ms. Lawler said. The computers and cable lines were already available at both Ms. Murphy's house and in Ms. Lawler's classroom.
'Zoe Can See You, Too'
Ms. Murphy still remembers the first morning in March when she and Zoe flicked on the computers and cameras. Suddenly, the four little tables where all the students did their work came into focus: one red, one yellow, one blue, and the green table where Zoe used to sit.
They could hear the excitement on the other end of the cable line. "I heard a bunch of screaming," Zoe recalled.
She could also see and hear Ms. Lawler calling attendance. The first student called out "present," got up from her desk, and approached the camera. Zoe's face filled one large window on the screen. In a smaller window toward the bottom of the screen was a picture of what Zoe could see.
"If you can see yourself in the small window," Ms. Lawler told her students, "then you know Zoe can see you, too."
"Hi, Zoe," the first pupil said, waving. The other 28 kindergartners followed suit, stepping in front of the camera one by one to greet their long-lost classmate.
"I cried through the whole thing," Ms. Murphy said. "I think Zoe felt so special. That's what she told me—that it was such a special thing."
The Web camera, quickly dubbed the "Zoe cam" by the kindergartners, proved to be just the tool Ms. Lawler had wanted from the beginning.
"She would participate all day long," the teacher said of the homebound girl. "When we [learned] the letter W, we were weighing watermelons and counting seeds. Zoe had her own watermelon, and she weighed it and counted the seeds right along with us."
The two-way window also helped sensitize Ms. Lawler's students to Zoe's illness.
One morning, the class turned on the computer to find Zoe curled up in Ms. Murphy's lap, too sick even to raise her head from her caregiver's chest.
"It was clear she wasn't feeling well," Ms. Lawler said. "All the children went up to the Web cam to tell her they hoped she would start to feel better soon. It was really touching."
Connecting hospitalized or homebound children to the classroom doesn't require live video.
In Jackson, Miss., the state education department teamed up with the Blair E. Batson Hospital for Children to set up a program in 1997 called "Connect-2-Tomorrow" that provides Internet-ready computers in 130 hospital rooms.
The program, financed by a $625,000 grant from the U.S. Department of Commerce and $645,000 in matching funds from the Mississippi education department, is aimed at helping the hospital's sickest children, those with leukemia, cystic fibrosis, brain tumors, bone cancer, severe asthma, lupus, and other serious diseases.
The technology allows the children to communicate easily from their beds with teachers and fellow students. They can receive and turn in assignments over the Internet and participate in some class activities online.
More important to many health officials is that the children can use the technology to reach out to individuals who are part of their regular lives. They can focus on something besides their illnesses, if only for a little while.
"Our whole purpose for using this was the education, but the major benefit has been the social connection," said Linda G. Schivers, the hospital's pediatric education director. "We get children here who are isolated for long periods of time. We have to give them as normal an environment as possible. ... We need to not only give them schoolwork, we need to make sure we give them an edge."
Starting a Program
Back in Virginia, meanwhile, the 165,000-student Fairfax County school district is in the beginning stages of creating a similar program in cooperation with Inova Fairfax Hospital.
Teachers in the district spend up to 10 hours a week working one-on-one with sick students who are confined to homes or hospital beds. But the students must have been out of school for more than 30 days before they are eligible for those services.
"The policy didn't address the cyclical nature of some of these kids' illnesses, or the fact that children who previously had what were considered fatal illnesses are now being treated successfully," said Mary Shaughnessy, the district's director of student services. "We need to have something far more fluid to keep these children attached to their teachers, classrooms, and classmates."
The school system is starting online classes in core curricular areas for children in the elementary and secondary grades who can't attend school, as well as e-mail accounts to link all of the district's teachers and students.
A $26,000 grant from Verizon Virginia Inc. will eventually furnish homebound and hospitalized children with laptop computers that have teleconferencing capability. And $100,000 in grants from a private foundation will help finance the wiring and placement of computers in anywhere from 50 to 70 rooms in the children's hospital.
"At any given time, we might have 300 kids in need of these services," Ms. Shaughnessy said. "We're pretty much clear on what we want to do for them. Unfortunately, a lot of this is in the conceptual stages, and it's going to take time."
Mr. Leichtweis, the head of educational services at Inova Fairfax Hospital, agreed.
"What we've found in developing this is that there are not many programs like it throughout the country, and there's a good reason for that," he said. "It's very expensive, it takes a good deal of management, and there are some serious issues involving confidentiality and breaking down barriers between institutions."
In the rare cases where interactive technology has been used to link students with life-threatening illnesses directly to their classrooms, advocates say it's most often been accomplished at the insistence of parents looking for ways to help their children cope.
A Pennsylvania mother, Heather Y. Carlino, remembers the day her son, D.J., flipped on a color monitor and camera in his bedroom and saw his 3rd grade classroom. The screen was crowded with the grinning faces of 8- and 9- year-olds, waving and giggling into the camera. "D.J.," they cried. "You're here!"
"It was bedlam," Ms. Carlino said. "He was kind of on parade and uncomfortable with all the attention. But they eventually settled down, and he was just part of the class again."
D.J. was diagnosed with leukemia in 1997 and missed most of 1st grade. He was able to return to school for the 2nd grade, but a relapse the summer before his 3rd grade year forced him to resume chemotherapy and undergo a bone-marrow transplant.
School was out of the question.
The East Marlborough Township, Pa., boy had used a video phone to keep in touch with his younger brother and sister during treatment at Philadelphia Children's Hospital. Ms. Carlino thought the same technology might help her son pass the 3rd grade.
"I asked a social worker at the hospital why we couldn't use video to send him to school, and she said, 'Oh, well, no one's ever done that,'" Ms. Carlino said. "But I was a woman on a mission."
Working with the Seidman Foundation, Ms. Carlino and D.J.'s teacher at Unionville Elementary School set up a teleconferencing link that allowed D.J. to take part in most lessons and classroom activities by early May.
"It was just the boost he needed," D.J.'s mother said. "He didn't realize he was on par with everybody else, and he could do the same things academically."
And when D.J. returned to school for 4th grade the following year, "he was right where he needed to be," his mother said.
Using the Web camera, Zoe French, too, kept up with her classwork and socializing during her first year of school despite her long illness. She started the 1st grade at Aquinas Catholic this year without a hitch. And, stopping in to visit Ms. Lawler's room on a recent fall day, she looked every bit the 1st grader—a head taller than the year before and short a few teeth.
Ms. Lawler credits the girl's easy transition to her Web-camera experience. "I'd do this again in a heartbeat," the teacher said, hugging the little girl.
"It was cool," Zoe agreed.
Coverage of technology is supported in part by the William and Flora Hewlett Foundation.
Vol. 21, Issue 14, Pages 1,18-19