Education and medicine may seem like two completely different areas of support for a child, but when it comes to children with chronic or complex illnesses, they are more dependent on each other than you’d think.
Research on childhood cancer patients during the pandemic showed their academic needs were not being met in a virtual learning environment–particularly because of issues with cognitive delays and executive functioning that made that setting more difficult.
But these learning difficulties are a factor in any type of classroom.
The authors of that research, including Dr. Lisa Jacobson, co-director of Kennedy Krieger Institute’s Center for Innovation and Leadership in Special Education (CILSE), found there was a fundamental misunderstanding of how children with illnesses such as cancer are affected both during and after treatment—in some cases years down the line.
Cognitive late effects of treatments are not well known. Terms like chemo brain are relatively new, and childhood cancer is still rare enough that pre-service teachers are not familiar with its effects.
The Success Labs research group behind Jacobson’s study is focused on bringing more awareness of the learning impact of medical conditions to schools and establishing relationships between medical and school teams.
In an ongoing project, the team is adding information about these effects to journals in different fields of study—including in special education teaching journals.
Lisa Carey, assistant director of CILSE and Kennedy Krieger’s hospital-school liaison, partnered with Baltimore County last year to train every school psychologist in the district and help demystify unshared terminology between the education, medical and legal systems.
One of the biggest challenges is navigating special education eligibility.
“I tend to explain to families that they’re dealing with two sets of professionals that speak two different languages and the role I play often is the translator,” she says.
For example, explains Carey, in order to demonstrate to the school that there is educational impact from a medical condition, “the school team just needs to know that it’s a stroke. They don’t need to know what kind of stroke it was…When you’re talking to a child’s education team, precision actually creates a language barrier.”
For some conditions, including cancer, there is a misconception that students in remission can learn in the same way they did prior to their illness.
“Sometimes people don’t understand that challenges can persist after treatment,” says Renee Wooding, executive director of Cool Kids Campaign, which provides support to childhood cancer survivors and their families through its Towson clubhouse. If they look how they used to look, “parents and teacher[s] can think that everything else is going to be the way that it used to be, too, and that’s not always the case.”
“It’s really about communication all ways—the three-way communication between the family and the parents, between the healthcare providers and between the school team,” Jacobson says.
This means parents can be proactive in asking about side effects, accommodations and impact to long-term learning, while specialists can be specfic in their questions to parents, explains Dr. Clifton Thornton. For example, are [their kids] getting B’s when they used to get A’s, or is it requiring extra effort to maintain those grades? Do they have poor grades because they are forgetting to do homework or have other signs of cognitive dysfunction?
Thornton, co-author of Jacobson’s study and former clinical nurse practitioner at the Children’s Hospital at Sinai, now works in pediatric nursing research at the Children’s Hospital of Philadelphia.
Being able to set academic expectations based on medical knowledge helps the child succeed in school and adjust socially.
Kids can be subject to bullying if their peers don’t understand why they are receiving special treatment, adds Erika Carson, founder and president of Cool Kids’ tutoring partner, The Brain Bodega.
There is also a blow to their confidence if they question their ability to learn. “They think that maybe they’re not as smart as the other kids,” says Wooding.
Cool Kids Campaign is one of only programs that follows kids throughout survivorship. Carey says transition programs tend to focus on reentry into school after an illness but not many go further. But school success is critical for employment and long-term health.
Dropping out of high school “is the worst thing for a cancer kid because what does a cancer kid need? They need healthcare,” Carson says.
