Bridging the Gap

Bridging the Gap

Two local moms started a business to help families communicate with teachers, doctors and others when a child has a medical condition

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Wendy Taylor (pictured with her son Harrison) and Julie Schumacher started a business to help families communicate with teachers, doctors and others when a child has a medical condition. Photo by Liz Lynch.

 

In August 2012, 4-year-old Harrison Taylor began having dizzy spells. He would freeze in his tracks and yell—“a bloodcurdling scream,” his mother says. Sometimes he’d throw up. The first few specialists couldn’t detect a cause, nor were any of the doctors more enlightening when Harrison was examined during visits to the emergency room. A CT scan performed during one trip to the ER came back normal. Later, it was determined that the scan had been misread.

Frustrated and bewildered as the months went by, Wendy Taylor made an appointment for her son at D.C.’s Children’s National Medical Center in May 2013, and brought along a binder documenting Harrison’s history of examinations and tests. A doctor ordered an MRI. The following morning, the Gaithersburg mom received a phone call from the neurologist. He asked where she was. The question frightened her, Taylor recalls, “because I knew in my gut it wasn’t migraines or epilepsy.”

Later that day, Taylor and her husband, Chris, met the neurologist at the Children’s National outpatient clinic in Rockville. After describing the cerebellar tumor pushing into their child’s brain stem, the doctor said he’d already made appointments for the Taylors with the heads of neurosurgery and neuro-oncology. It was painful to listen to, Taylor remembers, but given her frantic mindset she was grateful to be told what to do. When she later tried to explain the nature of the ailment to Harrison, he interrupted her. “A thingamadoodle, right?” the preschooler asked, and she nodded, both relieved and terrified that her child’s life-threatening illness could be reduced to a trivial epithet.

On June 14, neurosurgeon John Myseros operated on Harrison for six hours, removing all of the tumor except some unreachable cells. Forty days in a physical wilderness followed, with Harrison forced to relearn the most basic motor functions. Then another two years of outpatient therapy, which included riding on a horse named Mystic.

Coping with Harrison’s special needs thrust Taylor into a steep learning curve; explaining them to others required something akin to a special language. A year after her son’s surgery, Taylor met someone who spoke that language when she was introduced by a mutual friend to Julie Schumacher, a marketing strategist who lives in Bethesda. In early 2014, Taylor hired Schumacher to redesign the website for Learning Essentials, the academic tutoring and coaching service she founded in 2005. Gradually, the two discovered a deeper connection: Both had been dealing with the challenges of having a child with serious health problems. Schumacher’s younger son had a childhood disease that plagued him until high school. (Her son did not want to be identified or interviewed for this story.)

Taylor’s own trials with Harrison emerged slowly, painfully in their conversations, as the two women discussed the impact that a chronic illness can have at home and at school. They talked about some of the lesser-known conditions that can cause problems in the classroom, including PANDAS, short for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, and POTS (postural orthostatic tachycardia syndrome), a disorder involving the autonomic nervous system. Symptoms of PANDAS include motor and verbal tics, separation anxiety, behavioral changes, incontinence and even changes in handwriting. POTS, which sometimes affects teens, can manifest in fatigue, dizziness, nausea and confusion, often referred to as “brain fog.”

 

Wendy Taylor (left) and Julie Schumacher started Power UP this past August. Photo by Liz Lynch.

 

Schumacher related stories she’d heard from friends who found themselves swamped by their kids’ medical appointments, school schedules and academic requirements, making it a struggle for the parents to keep up with the demands of work and home. A child in her community suffered a concussion during a soccer game, and the transition back to school proved difficult, requiring the girl’s parents to communicate more often with school staff and make sure their daughter’s workload was adjusted. Another child required frequent bathroom breaks due to Crohn’s disease—an inflammation of the digestive tract—and her parents had to intervene after teachers suspected that she was malingering, Schumacher says. Taylor spoke of some clients at Learning Essentials who felt as if they were under house arrest. “They are raw, exhausted and overwhelmed,” she says.

The women’s shared experience, as well as what they’d learned from others, suggested that doctors and educators were islands in need of a bridge between the two to help reduce stress on the child—and the parents. They envisioned a kind of liaison who would supply support services: an advocate for the child; a stand-in for parents at school meetings; a translator for “med-speak” in classroom settings; even a “bad cop,” should a breakdown in communication result in an adverse outcome for a client. They sought the opinion of pediatricians. “No one is doing this,” the doctors said.

In April 2018, Taylor and Schumacher lingered over lunch on the sunny patio at MoCo’s Founding Farmers in Potomac. A merely intriguing idea was becoming irresistible. Over the summer, they consulted with other professionals and more parents. Taylor concluded that they could help manage a child’s school experience by providing useful information from medical professionals and continually updating the teachers and school staff, including the nurse. A website for their new business went up in August, followed by a kickoff event in September. Schumacher describes their mind-meld as “two moms, two kids and an opportunity for change.” The name they chose, Power UP, reflects the power, or energy, one needs for a long and difficult journey.

 

Julie Schumacher, 54, is buoyant and extroverted, a dynamic force who cut her sales and marketing teeth as a representative for a pharmaceutical company. Wendy Taylor, 44, is tall, carries herself like an athlete but is shyer than one might expect. She is reserved, measuring her words and moderating her emotions. As a team, they are yin and yang, and appear to balance each other well.

Taylor trained in special education; she grew up with horses and has experience as a therapeutic riding instructor. Through her professional background, she had “an understanding of what happens” when children with learning disabilities or medical conditions have to navigate their way through standard educational situations, she says. The moment that situation became personal, however, it seemed unreal and paralyzing.

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