Tailor-made instruction

When Kira had to skip a few days of school last winter due to a stomachache, no one thought much of it. “Your child will be back in school in a few days,” they told Ellen Kuwana, Kira’s mom. But the 11-year-old’s pain did not go away.

After seeing pediatricians multiple times, she was diagnosed with a rare virus, which explained her paralyzing pain and nausea. Kira became extremely sick, lost more than 20 pounds and couldn’t leave her house.

Not surprisingly, Kira missed months of school.

But staying out of school was not only due to her pain: Kira also became self-conscious of her looks. Because of her illness, she was pale, had dark circles under her eyes and looked sick. For a pre-adolescent, young woman — at just the age when kids become acutely aware of how they look — Kira’s self-consciousness was anxiety-provoking, and she didn’t want to be around other kids.

But Kuwana had an idea: Seattle Children’s hospital had a school for inpatients. Kira was an outpatient, but Kuwana asked the school if her daughter could attend. Seattle Children’s said yes.

“Kira is not a typical kid for attending the Children’s school, but for her, it’s a really great, safe environment,” Kuwana said. “They meet you wherever you are, which they’re able to do because they have such a diverse set of patients. It was a great way for Kira to meet other kids who were coping with even more than what she was experiencing.”

Kira’s been attending the school for the last two months, which meets every day from 10 a.m. to noon. Kuwana drives her, waits for her at the hospital and drives her back home.

Kira will most likely return to her regular school in another couple of weeks.

“She will be at Jane Addams Middle School (11051 34th Ave. N.E.), and we’re working with a counselor to figure out a transition plan,” Kuwana said.

School services

The program has six teachers and four instructional aids to teach hospitalized kids. Staff works with the medical teams to tailor instruction to each patient’s needs and coordinates with the patient’s school to acquire schoolwork. The staff also coordinates with the school when the patient is discharged.

Brian Ross is the head teacher, and he essentially built the program, after coming onboard in 1981. He said the kids primarily come from inpatient psychiatry, inpatient rehabilitation and the cancer units. A smaller proportion of kids come from the medical and surgical units.

The program sees 1,300 patients per year, coming from more than 250 school districts in the state, according to Ross.

There is the main daily classroom, but many kids need bedside instruction. Additionally, the psych unit is a locked facility so those kids have their own self-contained classroom.

“We try to see kids daily; some kids might get 10 hours of instruction per week,” Ross said. “Bedside sessions are 45 minutes, and those kids get at least three hours per week.”

The program sees 90 kids on average each day, Ross said, and each teacher manages more than 20 students.

“It’s hard because it’s not like working in a single classroom of 20 patients,” Ross said. “It’s like physically working with 20 individual patients. Every time we get a referral, we need to look up the kid’s background information, get the medical condition, figure out the implications for the family, find out how long the kid will be here and do evaluations.

“We also need to contact their schools and get their material,” he continued. “And then keep in touch with the school throughout the process, and as we get near discharge, directly contact the schools again.”

Inpatients are eligible for school services if they’re hospitalized for longer than one week. This makes the workload lighter for school services, since the average stay at the hospital is five days, according to Ross.

Most of the kids have or will be identified as special education or have “Section 504” status, which requires schools to provide educational accommodations to disabled students.

“It’s very rare to find kids where their medical condition doesn’t have an impact on their education,” Ross said.

History of the program

Prior to 1981, the program was the Seattle School District’s responsibility, sending two teachers. The program was OK for kids who were good students and were only out of school for a little bit, according to Ross; however, for kids with acute illness, such as cancer, who were hospitalized for extended periods of time, the program was not efficient. Kids got no more than three hours of instruction per week, and since those three hours could include teachers’ travel time and lesson preparation, patients were often left with just one hour of instruction per week.

“Everyone felt the program wasn’t working well, and we needed to make modifications to solve the problem,” Ross said.

In 1981, the hospital contracted with the state so money would flow from the Legislature through Seattle Public Schools, and Seattle Children’s would hire its own certified teachers. The model has been used ever since.

The hospital funds 60 percent of the program’s costs, according to Ross. The state is required to provide school services to the hospital as part of the Vocational Rehabilitation Act of 1973, which disallowed workplace discrimination due to disability. Students with disabilities are included under the act’s Section 504.

Nearly all the teachers are certified in special education and have experience in public school classrooms. The program also has many volunteers.

While teachers may not be able to cater to every academic subject (such as Advanced Placement calculus), Ross said the program is well-equipped to take on any child, regardless of their learning and medical needs.

Additionally, the program brings in academic specialists. In the general classroom, kids are exposed to philosophy, art, music, poetry and writing. The program has a contract with Seattle Arts & Lectures, in which professional writers work with patients. Lately, patients’ poetry and artwork have been published in a glossy booklet that they get to take home.

Learning while sick

The patients Ross sees have an inspiring amount of perseverance.

“How do you think of coming to school when you have chemotherapy and feel horrible?” Ross said. “How do you come to school when you just lost both your legs in an automobile accident? How do you come to school when you just had a recurrence in cancer and they are out of treatments and nothing can be done? Yet, the kids still come to school.”

“They are very courageous,” he added. “They carry on. They are not ready to give up yet — that’s the beauty of youth. They take these incredibly catastrophic events in their life and are ready to move forward like they are just bumps in the road.”

For many of them, doing schoolwork is very important because they feel they have a future, Ross speculated. When they stop doing those things, they are accepting the fact that they don’t have a future.

“It’s a really good place to be when you can’t be at a normal school system,” Kira said.

“It’s really nice to know that there are other kids going through what I’m going through. It doesn’t make you feel weird. No one asks you questions.”

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