Shattering the expectations gap

Mountain View parent Tanya Sheckley remembers her child, Eliza, as a brilliant dynamo who aced classwork at Stevenson Elementary School, had an infectious personality and made friends and inspired the people around her — all without being able to walk or talk.

Eliza was born with cerebral palsy, a debilitating orthopedic impairment. But like many children with the disorder, Sheckley said Eliza was firing on all cylinders on a cognitive level, proving to her that children with disabilities have an intense desire to succeed and don’t have to hold anyone else back.

Sheckley is looking to turn that inspiration into action, and is on course to open a new inclusive private school at 284 Moffett Blvd., not far from downtown Mountain View. Barring any pitfalls with permits, the school is expected to open its doors for a mix of children with and without disabilities this September.

The impetus for creating the private school, called Up Academy, is that public schools are often strapped for time, staffing and resources to support students with disabilities, and have no legal obligation to tailor coursework to ensure special needs students perform to the best of their abilities. This often results in a lowering of standards and goals that Sheckley called the “expectations gap,” in spite of how well public schools make adjustments for inclusivity and warmly accept children with disabilities.

“I had a little girl who was in the top half of her class, reading well and doing three-digit math in first grade,” she said. “Because of her disabilities, we didn’t have those high expectations. I believe there is a huge expectations gap.”

Sheckley admits that she and her family probably fared better than others, describing how Eliza thrived in inclusive classrooms that had a healthy emphasis on differentiated instruction. Stevenson Elementary is a parent participation program, which made her dedicated classroom aide less obvious because there were so many parents around.

Eliza was quick to make friends with students without disabilities, which Sheckley said inspired her to create an inclusive school for kids with and without disabilities. She recalled one mother who thought having a student with a motor impairment might hold back the class, only to realize that Eliza was just as smart and capable.

“She thought maybe her daughter was just patronizing (Eliza), and she realized that they actually were friends — they had the same interests and liked the same things and got along,” she said.

The vision for Up Academy isn’t designed just to help students with physical disabilities. Anne Marie Roberts, a board member for Up Academy, described the program as project-based, with a big emphasis on social and emotional learning, empathy, and a lot of movement and physical activities — all a great benefit for students with and without disabilities. Borrowing from experimental schools like Khan Lab Schools, board members are also seeking cross-grade collaboration.

“It will incorporate things that are essential for leadership and success in all walks of life really,” Roberts said. “I don’t think anything currently exists like this.”

Sheckley said the ideal balance is to have 30 percent of students with disabilities and 70 percent of so-called “neurotypical” students. There’s nothing magical about the ratio, she said, but it ensures a healthy balance so students from neither of the groups feel isolated. Students will all need to be able to do age-appropriate classwork, and can’t have disabilities so medically complex that support for feeding and breathing is needed, for instance. Early plans call for enrolling up to 50 students, starting with kindergarten through second grade.

Eliza’s legacy

The idea of creating an inclusive private school catalyzed sometime in mid-2015, when Sheckley began rallying support to turn her model for a school into a reality. She incorporated her own nonprofit in December that year, laying the groundwork for Eliza and students like her to have an education with seamless access to therapeutic support and academic standards that would be truly challenging.

But the plan came to a halt when Eliza unexpectedly died in her sleep in March 2016, at age 6. Sheckley recalls that, for about a year, she put Up Academy plans on ice and considered dropping them altogether. Paperwork, business plans and managing the nonprofit went from time-intensive but relatively smooth to nearly impossible.

“I couldn’t concentrate,” Sheckley said. “I couldn’t work. My entire neurology changed. Things that used to be easy for me to remember — I just couldn’t keep track of.”

After spending the hiatus soul-searching, Sheckley decided to open the school anyway, even though her daughter would no longer be among the attendees.

“I was inspired by Eliza about an inclusion school,” she said. “There are too many other kids out there like her, too many stories similar to ours.”

Although the school has yet to open, Up Academy’s website is already full of information on the priorities and the vision for the small, future campus. Perhaps the most illuminating information about the school, however, lies within a series of blog posts written by Sheckley dating back to October 2016.

In the posts, Sheckley writes about varying events, personal thoughts and realizations that have little to do with one another on the face of it — a Turkey Trot event for Thanksgiving and selling Girl Scout cookies outside of a military base. But the disparate posts all have a sort of synchronicity, bending back toward her dream of creating an inclusive environment for kids who are different. The posts paint a clear rationale for why she resolves to open Up Academy.

Some of the blog posts are raw with emotion, particularly the first post in October 2016, seven months after Eliza died. Still grieving, Sheckley wrote about how Eliza fundamentally changed who she was and taught her so much, vowing to honor her legacy by helping those living with cerebral palsy. Eleven days later, she wrote about the early days of trying to advocate for her child as an incoming kindergarten student, and the “shock and disappointment” she felt when she realized disability laws in the United States are based on providing a “floor” for special needs students and accessibility, rather than helping kids achieve to the best of their ability. In terse language at the end of her post, Sheckley reaffirmed what she set out to do.

“It shouldn’t be this way,” Sheckley wrote. “There should be a better way. I started to design a new kind of school.”

Several families at Stevenson told the Voice that Eliza never held back her fellow students — on the contrary, she created a classroom environment where kids pulled out their problem-solving skills to learn how to best communicate with someone who they genuinely felt was an equal.

Julie Garst, a Stevenson parent at the time, recalled how her fourth-grade daughter volunteered to be Eliza’s reading buddy, in order to get to know Eliza better. Her classmates used strategies like holding up two hands and having Eliza pick one as a means for choosing from two options, and during group projects Garst said she was 100 percent engaged.

“At first I was so worried about her going to school and making friends, but she ended up being the life of the party,” she said.

When Eliza died, Garst recalled how Sheckley and Eliza’s teacher were quick to contact families to let them know what happened. She said school staff were candid about how it was okay to be upset and encouraged students to openly talk about what Eliza meant to them.

“She was their friend, and she was important both in the classroom and in their lives,” Garst said.

An unmet need

Sheckley, like many parents who have children with disabilities, searched for ways to help her child live the most normal life. She sought help from physical, occupational, speech and language therapists, found a clinic in Austria to get Eliza off of her gastronomy tube, traveled to Los Angeles for three-week intensive therapy using what’s called a “NeuroSuit” to improve mobility, and spent four months traveling to and from San Rafael to work with a team of therapists before Eliza started kindergarten.

She talked to experts about medication, surgeries, deep brain stimulation, nanoparticle development and brain plasticity, and read up on childhood brain growth and development — all with a sort of dizzying optimism that Eliza could be capable of so much more if she got the right kind of help.

The herculean effort made it an even more stark disappointment, then, when she realized that her local school district would do little to support Eliza with all the progress she had made up until that point. Sheckley said learning how to sit independently and walk with a support were not deemed academically necessary, and aides were not trained in how to continue working on mobility.

Sheckley said school districts provide therapists for students with disabilities, but there’s no guarantee that support staff will have expertise in the right field of pediatric therapy. And if parents choose an inclusive classroom setting for their child, they often have to contend with scheduling conflicts as kids are pulled from class based on the therapist’s schedule, leaving them to play catch-up with coursework.

The jarring conflicts between therapy and school meant Eliza spent hours at physical therapy before and after school, which ate up a huge portion of most of her waking hours.

“Suddenly, she was engaged from seven in the morning to six o’clock at night, and none of that was carved out for her to actually have fun,” Sheckley said. “If you can get those things during the school day, it frees up lots of time to be a kid.”

The struggles Sheckley and Eliza faced in public schools aren’t unique. Portola Valley resident Mike Rayfield told the Voice that his 20-year-old daughter, who has cerebral palsy, faced plenty of similar challenges attending schools on the Peninsula. Like Eliza, Rayfield said his daughter is medically quadriplegic, moving by way of a power wheelchair, but extremely smart and engaging. Fighting to keep academic standards high for his child was an ongoing battle.

Rayfield said his daughter attended small public schools in Portola Valley through eighth grade and had the advantage of supportive teachers and school administrators that were willing to be advocates on their family’s behalf. Such advocacy is essential in public schools, he said, but shouldn’t be necessary or so difficult to obtain.

Moving on to a large public high school, on the other hand, didn’t afford the same advantages, and Rayfield said he was uneasy putting his child in special day classes devoted to children with disabilities who are isolated from mainstream students. He felt that academic rigor tends to fall to the wayside in these classes, and the staff is clearly overtaxed trying to manage a staggering range of disabilities.

During Individualized Education Plan (IEP) meetings, Rayfield recalled the pressure by educators to ratchet down standards to make the goals more easy to meet — something he detested but understood.

“I think there’s a combination where you will meet parents of disabled children who are at a level of exhaustion you have never seen, and teachers say, ‘I need to give these guys a break and show them progress,'” he said. “It’s the wrong answer, but I think it happens sometimes.”

Rayfield also contends that the Bay Area is problematic, given that the standards are so ridiculously high. Pack those expectations on top of hours of therapy and it’s a recipe for putting kids behind.

“I honestly believe that, if you had to oversimplify, the education system in California and especially in more affluent areas is broken to the point where you are working your kids to death,” he said. “There is no time for physical therapy, no time for occupational therapy, and if you can’t do it, they say you’re a failure.”

Although his child is too old to benefit from something like Up Academy, Rayfield said that Sheckley is heading in the right direction by supporting inclusive classrooms and exposing kids with and without disabilities to one another, improving empathy and getting an unsheltered view of what the real world is like. Families with super high academic standards may shy away from the idea, Rayfield said.

“It absolutely will, and I don’t want them in my school,” he said. “I want kids who are emotionally aware, great citizens, will be equally successful. In the Bay Area we sometimes forget to show kids the real world.”

Jana Weaver, the parent of a child with cerebral palsy, ran into the expectations gap at a school in Cupertino. She said her son, Jack, made strides in speech and language development ahead of kindergarten at The Bridge School — famous for its Bridge School Benefit Concerts — but had an uphill battle in elementary school due largely to a neurological condition called Cortical Visual Impairment (CVI). He can see just fine, Weaver said, but the visual message gets scrambled in his brain and makes it hard for him to interpret what he’s looking at — a little like looking at the world through a kaleidoscope.

When Jack finished kindergarten, Weaver said they got the bad news that he had made zero progress in recognizing letters and reading. After asking about how the lessons were presented to students, she found that Jack had repeatedly been given the impossible task of differentiating letters that were not presented in a way he could work with.

Weaver’s tech-savvy husband created an app over the summer that could blow up the letters and color coded them in a way that could be parsed by someone with DVI. Letters like B and D look very similar, Weaver said, but Jack could figure out the difference if the B’s are orange and the D’s are blue. Within the first few months of first grade, he was able to read Dr. Seuss books.

Problems continued from there, however. Weaver recalled how her child struggled on third-grade math tests — which start to branch into three-digit math that can’t be done easily without writing out the steps — attributing the problems to teachers not doing enough to adapt the test, use color coding and blow up image sizes. Even more challenging is the constant churn of personnel changes.

“During his four years in public school he has had five different aides, three different vision teachers and three different orientation and mobility instructors,” she said.

But there really aren’t a whole lot of other options. The unfortunate reality, Weaver said, is that students with physical and orthopedic impairments have few places to go besides public schools.

“There are great private schools for ADD, autism, dyslexia — the whole Peninsula is littered with these amazing schools that can address these issues. But there’s nothing for cerebral palsy,” she said.

Search for a home

Starting a nonprofit and getting the new private school off the ground is a tall order, especially in a hot real estate market with challenging city planning requirements. Sheckley said she has been seeking grants and support from foundations, but the biggest snag has been finding a place to lease, leading her on a lengthy search spanning from San Francisco to South San Jose.

“Location has been without a doubt the most difficult part of this process,” she said. “With tightness of real estate and costs in general, combined with zoning restrictions for a private school, it had been the biggest challenge.”

Before signing a lease for a property on Moffett Boulevard in Mountain View, Sheckley had been considering a property in Palo Alto and later tried for a subleasing agreement in Menlo Park, but neither panned out. At one point she was considering using space provided by a synagogue, but they were in the process of renovating over the course of the next two years. Even after the dust settled, she said it only would have been a temporary deal.

Mountain View comes with its own set of challenges — the city is not known for lax zoning — but she said she was pleasantly surprised to find a suitable location and a permitting application that was amenable to a private school.

“I live in Mountain View, this is the community I know,” she said. “I would love to open here and be a part of the Mountain View community — that’s always been my preference.”

The type of school that Up Academy will ultimately become has evolved. Initially, Sheckley lobbied to get a New York-based program called iHope to open up a school in the Bay Area, but the partnership fell apart. She switched to an inclusive model, borrowing practices, programming, therapeutics and curriculum ideas from a myriad of places like The Bridge School, alternative private schools like Khan Lab Schools and AltSchool, and Summit charter schools. She also plans to emulate the parent-participation component at Stevenson Elementary.

Up Academy has received financial support through a $10,000 grant from Peninsula Outreach Programs Inc., or POPs Kids, as well as private donations totaling close to $300,000 to turn the idea of a future school into a reality.

The nonprofit has also found a big ally and supporter in the San Jose Earthquakes, which knew Eliza and the Sheckley family well. Family members are big fans who frequently attend games, and Eliza gained a reputation when she sold an extraordinary numbers of Girl Scout cookies, with Earthquakes team members among the buyers. She had achieved her ambitious goal of selling 600 boxes, and was prepared for a victory lap in March shortly before she died.

The team devoted a moment of silence to the family, hosted a celebration of life event and dedicated a tree and plaque in her honor in the stadium’s garden. The Earthquakes Foundation has partnered with Up Academy since, hosting events and paying for all the expenses for the nonprofit’s fundraisers, Sheckley said.

According to Up Academy board member Roberts, enough can’t be said about the extraordinary passion and effort that Sheckley has poured into the school, doing a staggering amount of writing, research and calls during a difficult time.

“She is the reason that this school is going forward,” Roberts said. “I’ve been honored to be walking in support with her, but she is certainly the driving force behind everything and has just done a phenomenal job.”

For more information on future enrollment and ways to donate, go to upacademysf.org.