Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

I am a single-minded problem solver by nature. This attribute is not universally favored, and often marks me as insensitive, void of empathy, and a bad listener. My natural inclination to shove lemons through a lemonade press has served our family well in the pandemic, however. What we’ve also had going for us is that our kid, a brilliant third grader named Aune, who has humbly decided to become the first-ever astronaut with Down syndrome, is extremely persistent, passionate, and a master of adapting to change.

In January 2020, our family of three was ready for an amazing year. Aune was having a hard-won second grade experience fully included in her neighborhood school, while the school was well on its way to becoming the kind of meaningfully inclusive elementary of which I’d always dreamed. The breadwinner, Ken, had new and interesting professional challenges. And the nonprofit organization I cofounded, Inclusion For ALL, was fast developing into a valuable resource in the state of Washington, not just for families and disabled students but for school districts as well.

2020 was going to be excellent – or, as the youth say, litty.

On January 20, the first U.S. COVID-19 case was discovered. The patient went into isolation at a hospital in Everett, Washington, 20 miles from where we live. I registered this as a minor local news event.

On January 23, I went for a walk with a friend, fell down in mud, and broke my ankle. Granted, this wasn’t the exact definition of litty, but I still imagined the biggest challenge ahead was navigating an upcoming inclusion conference on crutches.

Implementing a Universal Design for Learning framework in virtual learning was a real solution with immense positive impact.

The last week of February, we heard about a cluster of illness at a long-term care facility in Kirkland, our town, exactly 2.6 miles from our house. News emerged about deaths at the neighborhood hospital. In the growing atmosphere of panic, Ken decided to work from home, out of an abundance of caution, as everyone was fond of saying in March. He transformed a corner of our house into a workspace. We wondered about schools, contagion, and safety. My friend kept her daughter with a heart condition at home. Aune was the only one to show up to her karate class.

Then life really began to unravel. I received a panicked call from my parents in my native Finland telling me our tiny town of Kirkland was on the news, in Finland. Aune’s last day in a school building was March 11. Washington state closed down. We would have kept Aune home anyway. We were in the epicenter and education felt like an afterthought.

Aune has had lifelong airway and breathing issues. As a baby, she nearly died from a respiratory virus and apnea. As a toddler, she required continuous nighttime oxygen. Since then, she has often needed supplemental oxygen when sick, sometimes with something as trivial as the common cold. Looking at her now, it’s hard to reconcile just how disastrous a respiratory virus could be for her, but Aune is one of the many students at the intersection of being at a much higher risk of complications or death from COVID-19, while also needing extensive supports to meaningfully engage with and participate in her education.

The spring was rough. The state, district, and school were focused on basic elements of distance learning, so hardware and connectivity took precedence. Imaginative solutions, live }instruction, team planning, and meaningful connections were largely left to chance. Spring brought awkward videos without scaffolds or enrichment, printables supposedly clear to the students that weren’t, and frustration. Aune’s school and Individualized Education Plan (IEP) team found my expectations unrealistic, while I lacked guidance to help my intellectually disabled child meaningfully engage with second grade general education curricula that was taught by apps over glitchy, unintuitive platforms. The beautiful, coordinated teamwork that had enabled Aune’s inclusion and made her a successful student was breaking down into silos typical of segregated education.

I knew teachers were working harder than ever, but not much was reaching my child. In her boredom she did, however, master the art of playing Animal Crossing on her Nintendo Switch.

When the dreaded yet expected news came that distance learning would resume in the fall, I noted that the district saw an opportunity to reinvent. They called it 2.0 and promised emphasis on live instruction, social emotional learning, and the most substantial parts of the curricula. No more “holding pattern” learning, I thought.

But I wasn’t quite correct. It’s clear to me that there are additional challenges that need to be considered for in-person and remote instruction, especially for students with complex support needs. The pandemic has illuminated shortfalls in the system. I can’t help but feel that much of the potential in virtual learning was being wasted. Inclusive education was frequently abandoned in favor of teaching solely towards IEP goals, and social/emotional learning wasn’t happening.

But the district got some things right. Implementing a Universal Design for Learning framework in virtual learning was a real solution with immense positive impact. Meaningful engagement and success occurred as we transitioned from teaching as if we were in the building to a model that leveraged the virtual environment. Our district used multiple media, accessibility features, and caregiver empowerment strategies, and found ways to incorporate students’ different physical environments in comforting and stabilizing ways.

I’ve seen brilliant glimpses of solutions. I attend a weekly planning meeting with Aune’s team, which is focused on meaningful, interest-driven engagement over mere compliance. Supports are in place for Aune to be a real participant alongside and with her peers. Aune’s story remains the exception, not the rule, both before and during the pandemic, however. Privilege and persistent inequities built into our current education system play a growing role.

Although remote learning can’t fill the traditional custodial care role of schooling, there are imaginative ways of teaching and practicing safe socialization. In fact, this time of pandemic pivots has shown me the importance of separating these tasks of public education, so conversations about how to make education work for everyone, including students on the margins like Aune, will lead to action.

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