The pandemic has meant an abrupt change in routine for members of the community receiving special education services.
Lily Shoch, a student with Niikawa-Kuroki syndrome — a rare disorder characterized by multiple characteristics, including distinctive facial features, growth delays, varying degrees of intellectual disability, skeletal abnormalities, and short stature — has adapted well to online learning this semester. Her mother, Paula Shoch, is grateful she and her husband have flexible careers and can be home with their daughter.
“There are some single parents where the mom or dad has to work full time,” Paula Shoch said. “Well what do you do then?”
Lily Shoch attends the Work Foundations program through Central Susquehanna Intermediate Unit, which provides educational services for neurodiverse students in Pennsylvania’s Union, Northumberland, Montour, Snyder, and Columbia counties. The CSIU has vision, speech, physical, and hearing therapists available for families who need them.
The Work Foundations program helps address the functional needs of students who have finished high school, like Lily Shoch. Teachers help students develop the skills needed to write resumes, cover letters, and interview for jobs so they are prepared for the workplace. It also offers students opportunities to participate in extracurricular activities that exist at traditional schools, but neurodiverse students often don’t get a chance to participate in.
“She actually ran student council last year,” Paula Shoch said. “She had to put together her own platform, campaign, and present a speech.”
Work Foundations also has a facility where the students are taught how to maintain a home, bake, cook, and do laundry. Though the students had a choice of attending class on-site this fall, the Shoch family opted for Lily Shoch to learn remotely, since she is at a higher risk of complications if she were to contract COVID-19.
“I don’t know how some parents are even managing to do it,” Paula Shoch said.
Families whose children participate in special education programs, like the Shochs, have spent the past semester developing new routines to manage virtual schooling. While parents are learning to adapt to the role of in-home educators, teachers and administrators are figuring out how to both assess students’ development and make sure they have the resources they need.
Jill Szalony is a board certified behavior analyst employed by the Glen Ridge Board of Education in New Jersey. As an applied behavior analysis specialist, she uses a scientific and data-driven approach in order to help students. She recommends parents of special needs students do their best to create a functional routine to make their children feel secure.
“Kids feel safe in the normal routine,” she said. “And so trying to establish a semblance of a normal routine during virtual instruction is really essential to helping students feel good and safe so that they can accomplish what they need to.”
Kaylee Wadsworth is a special-education teacher at Elwyn, a private school in Elwyn approved by the state of Pennsylvania to teach students with autism, intellectual and developmental disabilities. She teaches six students between the ages of 11 and 13 and stresses the importance of a routine for students receiving special education services.
“The students I work with are very sensitive to change and for this reason, sticking to a routine is very important,” she said. “This whole change has been really traumatic, and a lot of changes in the schedule like that can also be traumatic.”
The pandemic has been disruptive for the Shoch family, and Paula Shoch has been especially attuned to how Lily Shoch has been handling the stress of the pandemic.
“What you’re feeling, they’re feeling it too,” she said. “They just express it a little differently.”
Lily Shoch misses her friends.
“The social piece is huge,” Paula Shoch said. “Kids like Lily thrive on routine. They thrive on that social input.”
Students receiving special education services miss interacting with their peers and regular routines as much as everyone else, Paula Shoch said.
“There are securities that have been challenged,” she said. “Routines that have been challenged, social worlds that are missed, there are experiences that they are thinking about and reliving that are missed, but that goes for everybody.”
Paula Shoch has witnessed how the effects of the pandemic have affected how Lily Shoch navigates social situations.
“One thing that she has been doing more since COVID is trying to orchestrate the day, and what was going to happen, and then what was going to happen next,” Paula Shoch said.
Before a socially distanced family get-together this year, Lily Shoch latched onto how the party went the year prior, before COVID-19 restrictions were in place. While her mother thinks she is looking to past experiences with good outcomes for comfort and guidance, she also had a bit of wisdom to share.
“We need to just live in the moment,” Paula Shoch told her daughter. “Let’s just enjoy today and let it be what it’s going to be.”
Parents can plan familiar activities for children as part of the at home-school day, Szalony said.
“The goal is to create some sort of organization in the chaos,” she said.
Throughout her time in middle school and high school, Lily Shoch was heavily involved in the drama department and performed in many school shows. Since these opportunities are now limited, she has turned to her love of Broadway and theater to occupy her time.
“She has been watching a show — sort of like America’s Got Talent for Broadway shows,” Paula Shoch said. “Lily pretends that she is one of the girls trying out for the part of Nancy.”
Imagining herself in the stage role is now often part of Lily Shoch’s school day.
“You’ll go in and she will say, ‘I’m doing a show right now!,’’ Paula Shoch said. “That is one of her activities of the day, creating her own dream world. And then she wins, and she gets the role, and she celebrates that.”
Another parent in the community, Darla Yocum, is the mother of two students with special needs, Ford and Sawyer, and two neurotypical students, Isabella and Rebecca. Ford, 19, is diagnosed with prader willi syndrome, and Sawyer, 22, is nonverbal and has a seizure condition.
Ford, like Lily Shoch, is also in Work Foundations with the CSIU. Darla Yocum is a stay-at-home mom which has made the transition less difficult, though there have been frustrations.
“I would say one of the most difficult challenges is trying not to be outwardly upset and worried about it,” Darla Yocum said. “Ford picks up on that stuff and then he worries and worries.”
The Yocum family decided to allow Ford to attend class on-site at Work Foundations, but Ford told his parents he would prefer virtual school.
“He wants to do remote learning for some reason, but we won’t let him because he needs social interaction,” Yocum said.
COVID-19 is always on the back of Darla Yocum’s mind.
“I feel as comfortable as I can sending him back to school,” she said. “We tell him to wash his hands and not to touch stuff. It’s a smaller community because it’s only special needs kids, so I feel somewhat comfortable.”
But even parents who decide to educate their kids at home face their own set of unique challenges. Virtual learning has come with its own share of difficulties for the Shoch family.
“We thought things were going OK, and then got an email from her teacher about three weeks in,” Paula Shoch said. “My husband Rick made sure she was always on and doing her work, but the teacher told us that there was a list of classes that Lily wasn’t in and a list of assignments that hadn’t been turned in.”
After talking with her and going through her materials, the Shochs learned she had been signing out of some virtual classes because they were too noisy.
“I happened to be off one day, so I sat in her room and, sure enough, the teacher gave out an assignment and he was sitting there talking to another teacher,” Paula said. “Kids with special needs are just sensitive to things that challenge their concentration.”
For some teachers, the transition to virtual has been a significant change.
“It’s basically completely relearning how to do my job,” Wadsworth said.
Wadsworth’s school is currently virtual because the building is not approved to have students in it yet, and 80% of its students can’t wear masks because of underlying health conditions.
“I wasn’t expecting to come into it and be online virtually, but I think that the students are benefiting from seeing each other online at least,” she said.
Some schools that offer special education services have been able to allow students back into the building because they have a smaller student body. Trish Corvo, director of development and advancement at A Step Up Academy in Jenkintown, Pennsylvania, is happy their students are able to get back to in-person learning.
“We gave our families two different options to stay virtual or do a hybrid model,” Corvo said. “We split the school into cohorts. Half are in one week, the other cohort is doing online learning, and then they switch the next week.”
“It’s so great to see the students,” she said.
Officials at A Step Up Academy made sure to listen to the needs of families when deciding to switch back to in-person learning. To manage in-person learning, they have had to develop new protocols.
“We knew our families wanted our students to come back and they knew we would be safe,” Corvo said. “We do hourly cleanings, we have a whole safety plan that’s multiple pages, we removed any fabric toys, stuffed animals, and anything that could potentially have germs on it. Not only for the students but for our staff, because it was important that they felt safe coming back too.”
For students requiring special education services, in-person learning is important because school environments often have cues that keep students on task and keep them mentally prepared to spend the day learning, Szalony said. Virtual schooling has meant losing many of the things that are optimized to help students learn.
“Schools provide things like homeroom bells to notify students that it’s time for class, professionals trained in the field, and monitoring,” she said. “But home environments can’t mirror those things. It just doesn’t feel the same.”
Teaching kids with special needs requires individualized plans, since needs vary from student to student. The lack of routine and regular contact with teachers has led to some regression in learned skills, Szalony said.
“Kids are losing ground, losing skills, and they need specialized techniques that you can’t teach and learn over the computer,” she said. “We are dying to get them back in person.”
Even though there are many students losing ground, students who suffer from social anxiety are actually adapting to virtual learning quite well.
“The students with social anxiety are actually thriving in the virtual world because they don’t have the distractions of their social worries,” Szalony said. “They don’t have group dynamics, and the dynamics of being in a large building, so that small group of students with social anxieties are preferring the virtual nature and ease of being at home.”
For Szalony, virtual schooling has also meant more productive communication with parents.
“I am more closely connected to parents and am doing more parent coaching,” she said. “Rather than texting the parents once a month, I am interacting with them on a daily basis so that they are able to reinforce what the students are being taught.”
Lina Abi Daher, a paraprofessional who works one-on-one with students in an emotional learning support room, has observed a significant difference in the progress being made by students with parental support versus those without.
“Some parents are actually sitting next to their children on Zoom, and there is a huge difference between the progress of kids with parental support and kids with no parental support,” she said. “Some kids really need their parents to direct them and some don’t. If kids are home and they don’t have anybody next to them, then that child is really not learning.”
For many teachers, getting students the proper technology has been a consistent obstacle to online learning.
“The students didn’t all have technology because their district was supposed to provide it to them,” Wadsworth said. “Luckily, our specific school was able to provide them with the needed technology. But it took quite a while for them to get it out to the students, so I wasn’t able to see some of my students for quite a while.”
Once the students were all equipped with the proper technology, there were new obstacles to navigate.
“I know a lot of my colleagues who have students that are completely nonverbal are finding it really difficult to work with those students online,” Wadsworth said. “In a virtual environment, you have to talk with the students, so it’s hard to make sure the nonverbal students are benefiting.”
Some neurodiverse students also require in-person instruction for daily living skills, such as going to the bathroom and becoming more independent. Teaching these skills has been impossible over the computer, and Wadsworth has seen a regression in certain abilities.
“They’re in a setting where they can’t have the teacher there, the teacher will have to rely on the parents,” she said. “Sometimes the parents are working themselves, so it’s more challenging for them to develop a routine and skills that allow them to learn the daily living skills we aim to teach them.”
Technology is also affecting the flow of Abi-Daher’s class, and the technical difficulties and hiccups hamper her ability to evaluate learning.
“Today some students lost connection while I was reading a story, and then they logged back on,” she said. “I normally have questions at the end to test their understanding. The students that lost Wi-Fi couldn’t answer because they lost connection and didn’t hear the rest of the book.”
Wadsworth has also found it important to prioritize students’ emotional and mental health by focusing less on strict and rigorous teaching schedules and allowing for time to check-in.
“There has been a lot of loss and a lot of trauma during this time,” she said. “And a lot of times it’s more important to check on that than doing math for example. Like, why are we doing addition and subtraction if this student can’t focus because his family member died?”
Szalony stresses the value of continued persistence, for both parents and students.
“I would just say be persistent, to not give up if your kids are home working virtually, and it seems like it’s going a long time, and they’re not making any progress,” she said. “Just do not give up. Because any time they connect with a teacher virtually is an opportunity for a learning moment.”
For Paula Shoch, the time spent at home teaching Lily Shoch has been just as educational for her.
“These kids remind you that getting a cupcake at the end of the day is just like a great thing,” she said. “They remind you to step back and not make things too complicated. They’re not looking for these huge things to fix their world.”
She is also in awe of the resilience her daughter has shown throughout the pandemic.
“I can’t speak for all special needs parents, but you know, these kids are so resilient to some degree,” Paula Shoch said. “I’ll just speak for Lily. She is just amazing at making the best of the situation.”
Editor’s note: Our special reporting on COVID-19 may focus on communities outside Philadelphia because many of our student journalists are now temporarily located outside of the city. Instead, our reporters will cover how the coronavirus is impacting their own communities from across the country and around the world. We will return to hyperlocal coverage of Philadelphia’s neighborhoods as soon as possible.
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