Bridging the Gap
as Published March/April in Bethesda Magazine
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.”
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.
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.
Can A Homework “Nook’” Help?
By Wendy Taylor
as Published September 4, 2018 in Plastics Make It Possible
Getting kids to do their homework can be difficult, from kindergarten all the way through high school.
Can a dedicated workspace at home – a homework “nook” – help students succeed? And if so, what do parents need to set up a space that fits their student?
We asked education expert Wendy Taylor, founder and executive director of Learning Essentials in the Washington, DC, area. She has a Masters Degree in Education and is “passionate about helping students of all abilities, especially those with learning differences and disabilities, attain their academic goals.”
Taylor says that the best solutions consider the student as an individual. “Students learn at different rates. How they understand and interpret language and meaning can vary significantly based on their learning needs and preferences.”
Taylor notes that children have different learning styles. They may learn best from auditory signals, visual stimuli, hands-on techniques, through movement… or most likely a combination. Approaches to the homework station should be tailored to the student. Taylor’s advice: observe your student’s learning habits as much as possible and then experiment. Try the strategies or products below, see what works and what doesn’t, and adjust accordingly.
LANDING & LAUNCHING PAD
Back to school concept, young mother sitting at desk helping her little son with homework, boy is writing down in notebook
Keeping all school-related belongings– homework, forms, permission slips, etc., in one place can help with organization and focus.
Creating a “landing & launching pad” routine can provide a great foundation for homework success, says Taylor. When your student arrives home, she lands on the pad and places all her school related belongings – backpack, forms to sign/return, homework, lunch money/tokens, etc. – in dedicated spaces. Parents can readily see everything and check when assignments are complete. In the morning the student launches from the pad by retrieving her belongings.
Although the “pad” will differ by student, “Everything has a place,” says Taylor. “That can be something as simple as a small square on the floor or something identified on the wall. So it doesn’t really have to be in a large home, it can work easily in a small home, as well.”
Who says the best way to study is in a hardback chair? Try some new positions.
Seating is a big deal. Younger students may find a table and chair combo too confining. Older kids may be fine on a bed or a floor. Wendy notes that since school life often can be sedentary, getting kids moving – even when doing homework – can help.
Rather than slinking into a traditional chair, a plastic exercise ball can challenge your student’s balance and keep him active.
Sitting stools that wobble or rock back and forth (they typically look like tall plastic mushrooms) also can help keep your student on his toes.
An inflatable sensory cushion – basically a blow up plastic cushion with little nubs on it – challenges your student to balance and stabilize himself and can help improve posture.
Tying two exercise bands around the front legs of a chair can provide fidgety kids with an outlet and some exercise.
Even simple disc chairs that that swivel side to side can enable some active movement.
Some students are following the standup desk trend, using adjustable height desks that take them from grades 3 to 12 and beyond. Some have a tough, long-lasting plastic surface and some even have a swinging pendulum footrest bar to redirect fidgeting tendencies.
Stackable plastic in and out trays can help keep kids and parents organized for easier homework sessions.
Taylor says organization is universally helpful: “Everyone including the parents knows where everything is.”
Containers or caddies are the lynch pin of organization… and there’s a lot to choose from, typically affordable plastic boxes or bins. Taylor suggests thinking outside the lines a bit, such as using a plastic shower caddy or bucket coupled with smaller containers to carry homework supplies.
An erasable plastic white board is an invaluable resource for organization in the homework station, particularly useful for creating and tracking an after-school check list. Taylor says it can really alleviate stress because everyone knows what needs to be done, and the student can track progress by erasing items when completed. They also are used today for creating math equations in class that can be readily checked by a teacher and then wiped clean.
Stackable plastic in and out trays can play a role in the launching and landing pad design: a tray for parent stuff, a tray for unfinished homework assignments, a tray for finished homework that parents can review… whatever works for the student.
Timers are handy for clarifying the parameters of homework time. Taylor suggests using timers to break up the tasks: homework for thirty minutes, update the after-school list, ten minute break time with the wifi turned back on, and repeat.
Nearly all of these supplies are readily available online, at variety stores, or even at discount dollar stores. And for the organizationally obsessed, there’s an entire store dedicated to “containers” and the like.
Manipulatives like magnetic plastic letters and numbers are a good option for allowing kids to redirect extra energy.
Magnetic plastic letters and numbers are a good option for allowing kids to redirect extra energy.
Teacher: “Show me a group of five.”
That’s a lot easier for some young students to do with a set of plastic beads or disks that can be “manipulated” by hand, rather than using written numbers, Taylor notes. (This can be particularly helpful for the students with an identified or unidentified learning difficulty – one-third of U.S. school kids.)
Magnetic plastic letters and numbers on a board are a classic learning device that allows young students to visually manipulate their written world. Even fidget spinners fit in this “manipulatives” category, allowing kids to redirect extra energy. Older students may benefit from an algebra scale that allows them to move numbers around to balance equations, rather than doing everything on paper.
A space that cuts down distractions and classical music to help drown out noise can increase homework productivity.
What should students and parent avoid? Distractions. Loud noises such as a TV blaring in the background are obviously distractions. Many students find classical music in the background drowns out other sounds and helps them focus, says Taylor. (Think Mozart piano sonatas, not Berlioz’s Symphonie Fantastique.)
But even a mismatched space can be a distraction and take your student off track, says Taylor. “If they’re highly distractible students and you place them in a nook that’s downstairs and out of the way, and you can’t hear or see them, and they’re really not using time management effectively and getting assignments completed… then I would say that’s a hindrance.”
While electronics are being incorporated earlier and earlier, students of any age will need the capability to toggle back and forth from online to offline, a learned skill that initially may require parental guidance. In addition, Taylor advises that various apps can disable certain aspects of the online experience to help students stay on task. And breaking up homework time (use that timer!) with a positive “distraction” – music, snack, brief wifi freedom – can help students make it through homework time without undue disruption.
Change up your approach to homework and try age-specific solutions.
Your six-year-old will not always need you close by, mom and dad (sniff, sniff…).
It may be helpful for your first grader’s homework nook to be nearby (say, the kitchen table), says Taylor, when she may need parental engagement.
That may evolve in middle school to an alcove or desk near the living area where you can check in occasionally (and see what she’s actually doing online!).
Your sixteen-year-old likely will need near constant online access and may be happy sitting in a beanbag on her bedroom floor, with little parental supervision.
Nevertheless, the evolving space can continue to serve as the landing and launching pad… with minimal organizational aids.
Homework can be a slog, a point of contention, and a frustrating experience for you and your student. Or it can be a well-oiled machine that prepares your student for success. For most people, it’s likely to be something in between.
Regardless, educational experts like Taylor encourage parents to actively “learn how your student learns” and organize homework life accordingly. Wendy even runs “brain camps” to find out how a student learns and then translates that to school and homework life to enhance the student’s potential.
“It’s incredibly helpful for the student as they get older so they can advocate for their learning styles and needs, regardless if they have learning difficulties or challenges, so they can maximize what their potential can be.
Good luck, parents…
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