Cultivating Resilience in Children With Special Needs

As families settle into what Washington state Superintendent of Public Instruction Chris Reykdal has called “perhaps the most complicated school year in American history,” the families of students with disabilities are navigating a particularly murky path. From the pandemic’s impact on student rights to coping strategies for behavioral challenges to finding time for self-care, most days offer more questions than answers — and little respite or relief.

Thankfully, caregivers don’t need to have all the answers in order to support their student or to patch together a memorable and meaningful school year. More important than having an answer to every question is building resilience, or the ability to bounce back from setbacks. According to Jerri Clark, a parent resource coordinator for the PAVE (Partnerships for Action, Voices for Empowerment) Parent Training and Information program, working through the unique challenges of this school year can set families on a path of learning, discovery and growth that follows just what and how their student wants and needs to learn.

A bridge year

The upcoming school year will be complicated for everyone involved, because the most fundamental aspects of teaching and learning — how instruction will be delivered and measured — are very much in flux. Educators are still figuring out how to educate in this new environment, prompting the Washington State Office of Superintendent of Public Instruction (OSPI) to commit a portion of federal emergency funds available through the Coronavirus Aid, Relief and Economic Security Act to professional development and training in 2020–2021.

Which means that as of fall 2020, teachers and school staff are still figuring things out — with a long road ahead. For many, 2020–2021 will be a bridge year spanning the gap between the early crisis of spring 2020 and a new version of normalcy.   

All of this change is especially hard on students with special needs, including those with disabilities, learning differences or behavioral challenges, says Clark. Students who need therapies previously carried out in person, such as speech or occupational therapies, or children who relied on paraeducators, aides or special education classes were suddenly cut off from important learning supports, along with the familiarity and comfort they provided.

Even children who did not access these services, including homeschoolers or those without an official diagnosis qualifying them for in-school special education support, are heavily impacted by changes to their routines. “Children with a lot of behavior challenges are impacted disproportionately, because their routines have been so disrupted,” notes Clark.

As a result, children with behavior challenges may have meltdowns and act out more often than normal at a time when families have fewer outlets for relief or sources of support. As precious respite care and other forms of support become scarcer, families are stretched, stressed and simply worn out.

“Respite services that were already hard to access have gotten harder, and even things like a parents’ night out that might have provided a break have been cut off due to COVID. Because of medical fragility, some families can’t support one another the way they normally do. And helping a child use the technology for a telehealth medical visit or therapy session requires a lot of support from parents, so these things that used to provide brief breaks for parents now take a lot of their attention,” says Clark. “All the pathways for relief are impacted.”

It’s a lot. But there’s an upside to this struggle: the opportunity to build a wellspring of resilience that can make next year, and the year after, go more smoothly. Repeatedly adapting to stressful circumstances isn’t fun, but it does offer the chance to practice flexibility, patience and resourcefulness, skills that will serve children well inside and outside the (virtual) classroom.

Real-world resilience is an important and underappreciated learning goal for students with disabilities, says Jessica Soper of University Place. Her 9-year-old twins were homeschooled before COVID, so working with their learning differences at home isn’t new. But COVID’s closures have meant finding ways to adapt to life without the visits to libraries, museums and parks that used to fill their days. Adapting to COVID has meant becoming more self-reliant, more tech-savvy and more organized than they used to be — all positive changes, Soper notes.

Shifting plans, asking questions and finding new ways to communicate with others via technology help prepare students for a fulfilling life beyond school, she notes. “Ultimately, I want to empower my kids to function in real life.”

Resilience reboot

The first step to building resilience is getting organized, says Clark. Adapting to a rapidly changing learning environment is easier when you know and understand your child’s daily schedule and learning expectations. “Having children participate in creating the schedule is very calming to the central nervous system,” says Clark.

A visible, tangible plan for each day helps Soper’s twins learn at their own pace throughout each day. As homeschoolers who “unschool,” they don’t follow a traditional school-day schedule; instead, Soper plans lessons around the kids’ interests, such as cooking and math. But Soper recently started a new job and knew the family needed more structure. “Personally, I’m terrible with schedules, but this isn’t for me, this is for my kids,” she says.

More structure didn’t mean a strict hourly schedule, however. Instead, each twin has a laminated checklist of tasks to complete each day. The list includes activities of daily living (ADLs), such as brushing their teeth, along with chores and learning activities.

“When they get up, they know exactly what they need to do for the day. We find that the more questions we can take away, the less stress they have. It’s a task-based list, not a time-based schedule; it takes one twin a lot longer to go through it, but it works for us,” Soper says.

No need to go it alone

Adapting to change is also easier when you know where to go for help: “Families need to understand that it’s not all on them to get organized,” says Clark. “Their child’s school can help; parents can call the school and ask for support.”

Parents can also ask for training to help them learn more about managing behavior challenges, using online learning programs, and incorporating other resources and ways to support their student. “Parent training can be part of the ‘related services’ in an IEP, or individualized education program, so parents with an IEP in place can request training from their school,” says Clark.

Through her work with PAVE’s Parent Training and Information program, Clark helps parents of students with disabilities understand their legal rights. “What I primarily do is teach parents about student rights within special education … no rights have been waived during the pandemic.”

How do parents exercise those rights? Even in a pandemic environment, students with special needs still have a federally protected right to a free appropriate public education (FAPE) that’s accessible and inclusive in the least restrictive environment (LRE). Translation: Parents of students with learning differences and disabilities should still expect equitable access to education during the COVID-19 pandemic.

Since parents often don’t know how to start those conversations with their school or which questions to ask, PAVE maintains a list of questions, Key Information and Creative Questions for Families to Consider During COVID-19 Closures, to open the dialogue.

Simply asking questions helps build resilience by opening important pathways for communication between schools and families. “Parents can ask questions like ‘What is LRE, or least restrictive environment, in the context of COVID? What are other students accessing and how is that equitable for all students?’” Other queries might center on ways to help children with special needs understand social distancing, or how to make sure continuous learning objectives match a child’s natural curiosities.

Learning the language used by school staff and administrators can also make asking questions and getting answers easier. Terms like asynchronous learning, universal design for learning (UDL) and learning management system (LMS) can be unfamiliar to parents at first, so the National Center for Learning Disabilities includes definitions for these and other 2020–2021 education buzzwords in its list of COVID-19 parent resources.

Feel big feelings and breathe

Emotional intelligence plays a central role in resilience, says Clark. “Feeling big feelings is one of the most important things for families right now, and parents can ask their schools for support with social-emotional learning to help when the family is at home together all day.”
 
“Families that are afraid of their big feelings are having a hard time finding resilience, because those feelings don’t go away when we don’t acknowledge them,” says Clark. “Emotional intelligence requires noticing what is being experienced.” She often points parents to a strategy called “Name It to Tame It,” outlined in “The Whole-Brain Child: 12 Proven Strategies to Nurture Your Child’s Developing Mind” by Tina Payne Bryson, Ph.D., and Daniel J. Siegel, M.D.
 
Clark drew on her background as a yoga instructor to create PAVE’s video tutorials, providing simple mindfulness and breathing exercises to help families feel calmer, more centered and resilient. These practices include “Breathe to Keep From Flipping Your Lid” and “Stop and Settle With Five-Fingers Breath,” and each one takes from two to three minutes. “Breathing practices are absolutely imperative to keep everyone in their front brain,” she says.

Whether students learn on a screen, in the kitchen or in their backyard, schooling at home helps weave learning into a student’s daily routine. This transforms learning from something that happens mainly at school or in therapy to something that can happen anywhere, anytime. “When we can make learning part of the daily routine so that it’s engaging for the student and there are opportunities for mastery, the student can feel connected and valued,” says Clark. “That can be critical to engagement with learning right now, and that has the opportunity to be quite a silver lining.”