Ottawa Hills High School creates trial program to accommodate student with rare disease.

One thing COVID-19 has reiterated to teachers, parents and students is the importance of a traditional classroom setting. Students prefer learning in a real classroom over virtual, and the overlooked social skills absorbed through peer interaction is impossible to mimic virtually. 

Yet for medically fragile and immunocompromised students, physically attending school has its challenges, and few districts offer a combination of traditional versus virtual learning. Ottawa Hills High School, who piloted a trial iPad program with Avalon Budd last year, is one of the few exceptions.

Avalon Budd has hypophosphatasia (HPP), a rare genetic disease commonly called “soft bones.” A person with hypophosphatasia doesn’t produce the enzyme to deliver calcium to the bone, which results in abnormal and hollow teeth and bones, serious mental and physical fatigue, and metabolic challenges throughout the body’s many biological systems.

For the first ten years of her life, Avalon (Avie) had to adjust her typical everyday activities and frequently missed school. She couldn’t run or jump, she was confined to a wheelchair for part of each day, and even mundane activities zapped what little energy she had. 

In 2015, Avie tried the first approved medical treatment for perinatal, infantile, and juvenile-onset HPP: Strensiq (asfotase alfa). The daily, subcutaneous injections of the bone-targeted form of TNSALP replacement therapy has drastically improved the quality of her health and lengthened her expected life span (which was previously 27 years), but it is simply a treatment. It is not a cure. 

Avie is still at an increased risk for breaking bones, but the treatment has given her the option to be more physically active and partake in typical teenage activities. She explains, “I am still at a higher risk for injury and exhaustion than other kids, but I can do them and I choose to do them.” However, because Avie’s body must work harder than that of a peer’s due to her condition, she becomes so bone-tired and brain-fatigued, often accompanied by pain, that she eventually reaches a breaking point and needs to recharge by limiting her movement. 

Avalon was well-met by the administration of her grade school, Lial Catholic School, who took an active role in accommodating this challenge. However, her parents, Deborah Ayres and Douglas Hoblet, were told that high school might be a greater challenge. They knew Ottawa Hills had a reputation for high educational standards, so Avalon’s parents spoke with administrators to develop a plan to accommodate Avie’s needs. They were thrilled that Ottawa Hills faculty and staff were on board. 

Avalon learning virtually
Avalon learning virtually

Jill Michaelson, Director of Student Services at Ottawa Hills, explains, “When we met with Avalon’s family, and we heard about things that worked and didn’t work in the past, we figured out how we could meet her needs at Ottawa Hills. We wanted to have the academic rigor that Avalon very clearly needed but still be able to respond to her medical needs as well.”

Michaelson worked with administration and teachers so everyone was on the same page with the trial program, which is labeled “The iPad Pilot Program,” and while she was initially met with some hesitation, everyone was willing to give it a shot in order to meet Avie’s needs.  

Ben McMurray, principal of Ottawa Hills High School, summarizes, “Jill’s philosophy is, ‘Let’s get the team together–include the parents and students and all the teachers–and let’s figure out what we can do. It’s truly a team process.” 

Michaelson (left) with McMurray (right) collaborate to support the students at OH.

Michaelson adds, “I think it took all of 30 minutes for our IT staff to train the teachers, and the teacher buy-in was phenomenal. They had a commitment to Avalon. They were like, ‘Tell us how to make this work and we will do it.’ We worked together as a team to address any kinks that came up, which wasn’t often.” 

Since each of Avie’s teachers has an iPad, the process is simple: they turn on the iPad, which is located on a tripod in the classroom, and livestream the class to Avie at home. Avie is able to ask questions, follow along, and even participate in group work. Ottawa Hills transitioned to Google Classroom last school year, so whenever there is a virtual presentation (PowerPoint, notes, etcetera), Avie accesses those in real time through her laptop, while still being “in class” via the iPad. She utilized the iPad option about one day each week and attended live classes the other days of the week.

Teachers were surprised at the benefits of the program; they said the iPad program was “the next best thing” to having Avie physically present in the classroom. It also ended up being much less work for the teachers as they didn’t need to compile, deliver, and grade makeup work. 

Before initiating the program, Avie signed a contract in which she agreed to take responsibility for any work outside the classroom and to clearly communicate with her teachers. Her parents “have very little extra involvement, if any,” they said. “The main relationship between the student and her teacher remains intact with no extra stress for her. We do not have to intercede or homeschool at all. It is the closest thing to keeping things ‘normal’ for her,” Deb, Avie’s mom, adds. ”Considering over 38% of female high school students suffer from an anxiety disorder today, this program clearly supports lower stress for our daughter and maintaining her mental wellness, as well as her physical health.”  

Michaelson confirms, “Avalon was absolutely still engaged with teachers and peers; she has her priorities right. She’s hungry to learn.”

Avalon on her bed watching class through her iPad
Avalong laughs along with her group members as she learns virtually through the iPad Program.

McMurray adds, “She was able to stay connected with her peers and be part of the school culture. She was still a fundamental part of what’s going on in our school…it was a situation she could thrive in. Makes you think about all of the other medically-fragile students who could possibly benefit from something slightly different.”

The administrators and teachers at Ottawa Hills could have refused the request as other local high schools had, but they went above and beyond to listen to Avalon’s needs and figure out a way to address them. Thanks to their open minds and ability to problem solve, Avalon is able to remain connected to the school culture while honoring her mental and physical health. Avie summarizes, “Having a successful academic experience in high school will positively affect the rest of my life. I can focus on forward-thinking rather than catching-up.” 

“This was the next best thing to attending class in person,” McMurray concludes. “It was not the same, but it was pretty darn close.”