That moment arrived in 2013 as Taylor and her husband sat in a large boardroom at Children’s National. It was near the end of her son’s 40-day stay at the hospital. Arrayed around the table were Myseros, several other doctors, a physical therapist, an occupational therapist and other figures in white coats. “When you leave here,” Taylor heard them saying, “Harrison won’t be able to walk, eat or take care of himself.” She immediately thought of her other two boys—one older, one younger. “Hearing the amount of care that he was still going to need was overwhelming,” she says.
Her son had a Stage II cerebellar astrocytoma, a cancerous childhood tumor that usually spreads slowly within the cerebellum. After surgery, Harrison would not undergo radiation or chemotherapy to eradicate any remaining cancer cells. Instead, he would have MRIs and appointments with his medical team every three months for the first year, and imaging every six months until his five-year mark.
A prolonged hospital stay, the post-surgery rehabilitation, the endless doctor visits and therapy sessions—and the strain on her husband and her other sons—eventually forced Taylor to realize that Harrison would soon be in school and she would need help. But where would she find it? Even with financial resources, how would she navigate the often frustrating, time-consuming and always exhausting nexus of doctors, schools and work?
Harrison left the hospital in July 2013, and his recovery progressed quickly enough that he was able to start kindergarten at Gaithersburg’s Diamond Elementary School in late August. He received physical and occupational therapy several times a week for two years after his surgery. “Before starting kindergarten,” Taylor says, “it was imperative that we built an educational support plan that was in line with his medical needs and team recommendations.”
Since Harrison was relearning how to walk, his mother drove him to school. A teacher met them at the front of the building and escorted Harrison to his classroom to ensure that he did not get bumped in the hallway. “His medical team considered him a fall risk,” Taylor says. He had a special chair that made it easier for him to balance when he sat, and a rest area in the classroom. Taylor says she worked closely with both the medical and educational teams during the first few months as her son learned new skills and required different types of support. That meant calls and emails almost daily.
As first grade was ending in May 2015, Taylor says there was a “disconnect,” a difference of approach between the school’s physical therapist and her son’s private therapy team. Taylor had to step in and resolve it. “We had to collaborate and relay information, as he was in multiple therapies,” she says. “His support looked differently over the span of days, weeks and years as his needs changed.” For a while, he needed help moving from classroom to classroom, navigating playground equipment and participating in activities during recess. At home, Taylor says, “we were just trying to survive.” She jokes that her youngest son was raised in a doctor’s waiting room. Harrison is 10 years old now, an eager fifth-grader—and thingamadoodle-free.
Taylor used to take Harrison to the Pediatric Development Center in Rockville, which specializes in speech and occupational therapy. Audrey Burns, the center’s outreach coordinator, recognized the stress Taylor was under as she also had a child, a daughter, who survived a brain tumor. One day, Burns trailed Taylor into the parking lot and they shared their stories. After surgery, “you just don’t know if your child will be the same,” Burns says. “And the schools are not equipped, either in money or resources, to cope with this.” Burns says her daughter’s public school was unable to give her all the support she needed. “During her first months back after her operation, she was struggling in the classroom and playground without social/emotional support,” Burns says.
“I think through Wendy’s own experience she looks at children and their families in a totally different way,” Burns continues, “and she brings that viewpoint and that energy to Power UP.”
In its first few months of operation, Power UP developed action plans and resource kits for its clients—“transforming symptoms into strategies,” Taylor calls it—in the hopes of helping educators understand what children with medical needs are going through. When a student suffers a concussion, for instance, there are often questions about how much time is needed to recover, and the transition back to school can be tricky. Some of the symptoms, such as impulsive behavior, inattentiveness, nausea, dizziness and lack of concentration, can occur well after the injury, so Power UP has developed “watch lists” from neurologists to help classroom teachers know what to look for in post-concussive students.
“By summarizing the condition, sharing information, creating action plans, we are hoping to promote [the] management of conditions—including debilitating injuries—at an early age and empower students to advocate for themselves,” Schumacher says.
She and Taylor usually meet with a prospective client during what they call an “uptake” session to assess the scope of services that may be needed. Typically, fees are $1,000 for the uptake and $200 per hour after that, but both women stress that the rates are adjustable, and they are researching the feasibility of providing “scholarships” for families with limited income.
Taylor says school protocols for a child with a chronic medical condition don’t always match a doctor’s instructions. “So we try to get the school and the doctors to speak the same language to support the student, and in doing so, we are supporting the family,” she says. With the parents’ consent, they communicate with a child’s doctors when needed. “Essentially we’re opening up the conversation that the families are unable to have: They are running a marathon. They are exhausted, trying to juggle family life with the demands of a child who requires a lot of attention, time for appointments, for treatment and so on.”
The child’s illness or injury is always their starting point. “We don’t care about the [formal] diagnosis—we care about the symptoms that manifest in the classroom,” Schumacher says. To this end, they’ve created a professional development program called “Walk a Mile” that’s aimed at educating schools and allied health care providers. The program, which they ran this past October for The Siena School in Silver Spring—a private school serving students with language-based learning differences, such as dyslexia—is a simulation that demonstrates how medical issues may present in the classroom, and offers strategies that educators can use to assist students. If a child is falling asleep at a desk, would a teacher believe that the behavior could be a symptom of POTS? “Highly unlikely,” Schumacher says.
Power UP recently assisted a client whose son is severely allergic to peanuts. The boy was in a preschool that had a peanut-free classroom, but his parents learned during a parent-teacher conference that some of his teachers didn’t know about the allergy. Taylor, who had experience with Harrison’s allergy to bees, knew immediately what was needed. She and Schumacher provided the boy’s mother with questions to ask the school, and developed information packets and role assignments—such as who will carry the EpiPen on field trips—to give to the staff. Taylor accompanied the client to school meetings, something Power UP can do at a parent’s request.
“Wendy and Julie encouraged me to change my mindset,” says the boy’s mother, who was shocked and upset but also worried about being an overbearing parent. “They validated my concerns and told me I’m not alone. They said they would help me to feel confident as I advocate for my child.”
Schumacher describes Power UP’s mission as creating collaboration to support children. “You have families, you have a child with a condition, and you have a need,” she says. “I’m a liaison. If I can help someone navigate through a process—getting them information, educating and empowering them—then we’ve succeeded.
“We want more good days for these kids.”
Steve Goldstein is a freelance writer and editor and the former bureau chief in Moscow and in Washington, D.C., for The Philadelphia Inquirer.