When remote instruction began, 14-year-old Sophie Gottfried kept asking her teachers to “open school” during every online class. A student with cerebral palsy who attends Ivymount School in Rockville, Sophie longed for the personal interactions with peers and teachers that are a significant motivator and aspect of her special education program. “Sophie is extremely social and thrives with personal contact, but she has had to adjust to getting that interaction via the computer screen” says her mother, Cindy Gottfried. Along with supporting all daily living activities, Gottfried has had to change the parent-child dynamic to one of educator-student, working closely with the school team to learn how to provide 1:1 support to help Sophie stay on task during instruction.
“Many of my students really require hands-on learning taught within meaningful context to be fully engaged with learning and make progress, which means the burden is placed on parents to set up opportunities to practice these skills away from the computer on top of the time they are asked to participate in screen-based learning,” says Kimmy Clark, director of the program that Sophie attends.
It’s the type of situation being played out in the homes of students with disabilities across the region.
Susan Fitzgerald says the pandemic has completely upended life for her son Danny, an 18-year-old with Down syndrome who attends Wootton High School. “Danny’s entire calendar has been empty for the last six months, and he doesn’t understand what happened to all the things he does that bring him so much joy,” says Fitzgerald. “Unlike typical kids, he cannot interact or socialize with others remotely. His days are long and monotonous. This has resulted in him developing difficult behaviors that have made the situation 10 times harder to manage.”
Because Danny is non-verbal and has fine motor skill difficulties that limit his ability to independently use the computer and engage in classes, the Fitzgeralds have also been in every class with him so he can attend school, while also juggling their own job responsibilities. Susan’s husband eventually reduced his work schedule and they hired extra support for Danny for nine hours per week.
The COVID-19 pandemic has placed a huge hurdle before all students, and especially those with disabilities.
“The kids who need the most support and the youngest are having the hardest time. They require a lot of structure, specific sensory considerations and a lot of individualized attention and programs – most of which are impossible for caregivers to accomplish in their home,” says Susan Keisler, Executive Director of Partnership for Extraordinary Minds (xMinds), a Montgomery County nonprofit that works to improve educational outcomes for students on the autism spectrum.
While some students with autism have managed well, Keisler says they’ve heard most from parents with young children and those with severe disabilities who are regressing in their skills and language. XMinds responded with an evolving set of resources as the school closures continued – from keep-busy activities in March to parent webinars on advocating, as well as lists of tutors and sessions on managing distance learning. A parent of a 24-year-old with autism, Keisler says the situation is “heartbreaking.”
Still, the special needs community has celebrated positives where they can.
Gottfried worked with her Ivymount School team on strategies to help Sophie sleep through the night for the first time in eight years, tackled leisure activities she can do on her own and created picture schedules for lessons and activities. “Because parents are now so intimately involved in the learning process, they really have new insight to their child’s specific learning needs in a way they may not have before,” says Clark, whose team has offered weekly, individualized parent training to Gottfried and other families.
Dr. Lauren Lestremau, another program director at Ivymount School, slowly increased student stamina for live online classes and found creative new instruction platforms. “We have enjoyed expanding our tools for students to participate out loud, via the chat box and through platforms like Pear Deck, Microsoft Whiteboard and Flipgrid,” she says. “It has been integral in our ability to maintain student engagement and learning and we’ll likely continue to use many of these in onsite instruction.”
The pandemic has forced all schools to rethink the delivery of instruction and related services to students with special needs, says Dorie Flynn, Executive Director of the Maryland Association of Nonpublic Special Education Facilities (MANSEF). She notes outdoor classrooms, small group instruction in local parks and rec centers and investing in licenses to provide speech and language services, occupational therapy, tutoring and counseling via online platforms to students across jurisdictions in Maryland, D.C. and Virginia. “Telehealth is now the new norm and daily check-ins with families have helped tremendously,” says Flynn.
Without the structure and socialization provided by the school environment, says psychiatrist Dr. Lance Clawson, who treats children and adolescents with special needs, it’s imperative that families be on the lookout for possible red flags, such as increased tantrums or aggression, social withdrawal, reduced motivation or changes in sleep or appetite. “Then take care of your needs and realize in the pandemic we cannot do it all, so choices about where to invest our energies need to be made. We can only do our best, and that is good enough.”
Cindy Gottfried has been putting her energy into appreciating Sophie’s newfound skills, collaborating with school staff and introducing PTA virtual hangouts for parents to connect. “Many parents feel overwhelmed and have even more of an appreciation for what teachers and therapists are able to do for our children on a daily basis. It gives you a genuine understanding of the complexity of what goes into teaching each of our children.”