As a Mom of a Son With Multiple Disabilities, I Have the Receipts on Remote Instruction

Here at brightbeam, our North Star is “How Are The Children?” As parents look back over the last nine months of COVID-related school disruptions and closures, it’s likely that many would find a reductive “good” or “bad” to be lacking nuance. Life is complicated right now, and education is no different. As parents of children with disabilities know, when things are complicated for neuro-typical children, they tend to be more complicated for our special needs kids. 

So let’s call the lives of academic lives of families like mine “the good, the bad, and the ugly.”

What possibly could be “good” about remote instruction for students with disabilities? Not much—in fact, they are a group for whom school closures have had the greatest deleterious effects, many of them reliant on one-on-one assistance, various therapies, and the rigid structure of a typical school day. Yet, remarkably, there are fans out there.

Students with high-functioning autism, according to researcher Debra Reicher, may excel at academics but struggle with “the so-called hidden curriculum,” like “societal rules and social norms,” which can sometimes lead to depression and anxiety, “exacerbated or sometimes even caused by the intense demands for sociability and flexibility required in most mainstream educational settings.”

Another example: 14-year-old Jacob, who has ADHD, says, “I didn’t expect to enjoy online classes as much as I have.” Why? “ I’ve been able to focus on my schoolwork so much better now that there’s not a constant commotion around me” and “ I don’t have to worry about people talking or other background noise.” His parents were concerned at first because, says this young man, “I typically finish all of my work by around 10:00 in the morning rather than 3:00 in the afternoon … but, no, that’s just kinda how it works when you’re out of a classroom.”

These particular students, however, appear to be outliers. [pullquote]For the vast majority of America’s 7 million students with disabilities, remote instruction is both bad and ugly.[/pullquote]

Consider me credible: As a mom of a son with multiple disabilities, I have the receipts. For neuro-typical students, researchers are finding that learning loss is less dire than original predictions, largely because, since the novel coronavirus erupted like a geyser last March, some schools have come up with reasonable adaptations. (It’s also possible that kids don’t learn as much during regular school days as we assume they do: See Jacob’s comments.) NWEA reports that, on average, students have made gains in reading and math, just not as much when schools are open. (One caveat: One-quarter of children were “missing” from 2020 testing, most likely low-income and homeless students.) In fact, literacy growth is not so different during non-COVID years and math proficiency only dropped about 5%-10%. 

Yet that’s not true for students with disabilities.

Here are a few examples of extreme learning loss among special needs students, as reported by their parents:

• Kari Chambers and her nine-year-old son, who has a reading disability, live in Virginia. Since schools closed in March, he is falling further and further behind, writing his letters backwards again and losing his ability to sound out words. “Until we shut down last year, he was headed on a really good path,” she said. “He’s definitely regressed a lot, which is really sad.” She doesn’t know how her son’s school will provide remediation.
• Caren, a mom in New Jersey, has a 10-year-old son named Mark with cerebral palsy and visual impairment; he typically receives multiple therapies at his school in Wayne. "When we went to distance learning, I became the one-on-one [aide], I became the special education teacher, I became the speech therapist, the teacher of the visually impaired, the occupational therapist, the physical therapist, the orientation and mobility instructor. I don't have training in any of those things. I became all of those literally overnight." And, she says, these circumstances don’t give Mark what he needs to reach his potential.

• Zach Landa is 13-years-old and has a diagnosis of autism. His mother Carolina says, “when the school shut like a tap, Zach started hitting himself and stimming for several hours a day, every day” because “stopping school was a traumatic shock.” All his therapies were at school and she can’t afford private therapists. Meanwhile, Zach is losing hard-won skills and Carolina doesn’t know what his school plans to do to compensate for the loss of therapies.
• Five-year-old Henry Engel has severe special needs. His father reports, “COVID has been an absolute nightmare for him and millions of other children like him. I’d add more colorful adjectives, but you get the point.”

While schools are required by federal law to comply with Individualized Education Plans (IEP’s)—they are supposed to be legally binding, although that’s not spelled out in the Individuals with Disabilities Education Act (IDEA)—the novel coronavirus and the subsequent school closures has made all this, well, virtually impossible. While neuro-typical students tend to retain information, students with intellectual disabilities often lose ground. “Regression,” says Robin Lake, director of the Center for Reinventing Education, “is something that will be very, very hard to recuperate from.”

And [pullquote]what are parents to do when IEP’s are rendered superfluous?[/pullquote] If your kid is supposed to get three sessions of speech, occupational, and/or physical therapy per week—which often involves specialists making physical contact with a student—how does that translate to a Zoom session? 

It doesn’t. And, depending which state you live in, your child may or may not receive compensatory services. Why? Because it’s too expensive—even though, according to IDEA, funding is supposed to be irrelevant when creating learning plans that offer a free appropriate public education (FAPE) in the least restrictive environment (LRE).

And then there’s the ugly reality: [pullquote position="right"]“It would break the system of public education if we tried to compensate for everything that everyone has lost[/pullquote],” says Phyllis Wolfram, the executive director of the Council of Administrators of Special Education, which represents district-level officials.

“It’s a horror what’s going on,” says Patrick Donohue, a lawyer who filed a class-action suit on behalf of 500 families that was dismissed in New York City. “We have kids who were walking, now aren’t walking. Kids who were talking, now aren’t talking. Kids who didn’t have any potty-training issues, now they’re not potty-trained.”

How are the children? In the special needs community, most are enduring a bad, ugly breach of broken promises.