- At least 55 million US students were affected by school closures related to the coronavirus pandemic.
- While all children are susceptible to regressing during this unstructured period, children with disabilities are especially vulnerable.
- Parents of children with disabilities told Insider that their children have lost speech, social skills, and have engaged in self-injurious behaviour.
- Some parents are concerned about how their children will “catch up” even when schools reopen, since much of this type of development requires consistent, in-person therapy and time they can’t gain back.
- Visit Insider’s homepage for more stories.
While on the phone with her son’s caseworker in early April, Nardia Greaves heard a crash and scream in her Bronx apartment. The single mother raced to the bathroom and found Nate, her 7-year-old son, on the floor, pinned underneath the sink. He had climbed onto it from the radiator and pulled it down from the wall.
The boy lay in a pool of blood, and it looked like a “chunk of his arm was gone,” Greaves told Insider.
When they got to the emergency room, she learned that her son had severed an artery in his left arm. He underwent three surgeries and got two blood transfusions. He’s now recovering at home, but there’s a chance he may not regain full use of the injured limb.
“I never prayed so hard a day in my life,” Greaves said.
Children with disabilities are susceptible to regressing during the pandemic
Nate has autism spectrum disorder (ASD), a condition that impacts the way a person socializes and perceives the world. In the moments leading up to his accident, Greaves said, he became dysregulated. In simple terms, it means he couldn’t respond to a stimulating situation the way a neurotypical child would.
Prior to the coronavirus pandemic, Greaves said her son had been making strides in his behaviour and coping skills. When upset, he would have been more likely to take deep breaths, or get a hug to calm down. He also would have had a trained therapist at his school by his side throughout the day, making sure he was safe.
But children with disabilities have been especially vulnerable to losing skills and developing adverse behaviours during the pandemic. Even under normal circumstances, in a structured classroom, these children may struggle with attention and focus. They may need physical redirection and prompts to behave in the way that’s expected of them, said Dr. Jennifer Cross, a developmental paediatrician at Weill Cornell Medicine and NewYork-Presbyterian.
Without a set routine, oversight, and in-person instruction and therapy, children with disabilities may struggle to achieve their goals, and could lose a lot of the skills they have worked hard to develop, Cross added.
This regression is unsurprising, therapists and educators say. At least 55 million US students were affected by school closings related to the pandemic. That was particularly hard on children with disabilities who receive services at school. Many children also lost their in-person afternoon therapy sessions, which for some children can amount to as many 20 hours a week.
Those regressive behaviours can be severe and devastating. Some parents told Insider that their kids are losing speech and the ability to carry on a natural conversation. Some are engaging in self-injurious behaviour or have started hurting others. Kids who have been potty trained for years are wetting the bed. Children who have developed feeding and chewing skills may have to return to using a feeding tube now.
Both parents and therapists say they feel helpless, watching the effort they and their children have put in come undone.
Greaves spent several years trying different schools and therapies for her son. Finally, after finding one that worked, Nate began making significant strides. The 7-year-old was just beginning to say a number of words, including “mum” and “stop.” He was having an easier time sitting still through an entire activity. He was also getting better at regulating his emotions.
But without school or face-to-face therapy, Nate has lost his reliable routine and support system. He’s not talking as much as he was. He’s resumed engaging in self-stimulating behaviours. He’s back to mouthing toys and banging them on the floor.
After Nate got hurt, “I felt so defeated. I felt like the devil was riding my back,” Greaves told Insider. “When I take 10 steps forward, it’s 10 steps back.”
To be sure, many children without disabilities have also regressed while schools have shut down. Some parents of neurotypical children who Insider talked to also said their children have experienced sleep issues, bed wetting, tantrums and falling behind in their courses. There are reports of increasing anxiety and stress across age groups and abilities, according to Dr. Cross.
But, in general, neurotypical children will likely have an easier time regaining their skills than children with disabilities will, said Jackie Baker, a speech therapist who practices in New York City and works predominantly with children who have ASD. If children with disabilities developed maladaptive behaviours over the course of three to six months, it could take a year or more to undo them, she said.
She said that children with disabilities will also likely have a harder time transitioning back to old routines and learning in large groups than neurotypical children will.
Parents are concerned about how their children will fare even once school resumes
Some parents of children with special needs echo Baker’s concerns. They worry that their children won’t be able to “catch up” in the areas in which they have fallen behind. Unlike academics, therapists and educators can’t cram basic life skills and emotional development into a syllabus once schools reopen.
Since interventions at an early age are crucial, and so much of the progress is cumulative, many parents are grappling with the fact that their children will never recoup this time.
“The amount of time and energy it will take to get kids back to where they were is tremendous,” said Eliyanna Kaiser, a mother of 7-year-old twins with ASD. “To get them to where they could have been is impossible. It’s just a loss. It’s a different kind of loss than other people are experiencing.”
One of her sons has regressed academically, which Kaiser hadn’t anticipated. He resists participating in his remote classes and is struggling to add single digits, something he excelled in previously. Her other son, who has more significant disabilities, now has frequent meltdowns. He no longer greets people or makes eye contact with people he encounters, even if they are familiar faces.
It’s still too soon to tell how children with disabilities will manage once they resume their regular routines, Dr. Cross said, but she suspects that younger children with disabilities might have “greater loss of skills” than older children. But they will also have more time to recover. For each family, it will be situation-dependent, she added.
While parents of children with disabilities are eager to send their children back to school, there’s the added concern as to what school may even look like when it reopens. There are questions around how therapies that involve close physical contact will work, too.
Many types of therapies don’t work for children virtually
While schools and private therapists are offering remote therapy sessions, many types of therapies don’t translate over a screen, especially ones that require physical touch. Many children with special needs may not even be able to sit in front of a laptop for long periods of time.
While therapists are doing their best to adapt to the situation, many say there’s only so much they can do from their couches at home.
“I am used to having a warm, unspoken, and physical connection to the kids. They need hugs and laps and they like to touch hands and be close,” Baker told Insider. “Physical closeness makes them feel safe.”
Baker said that many of the children she works with have regressed to the baseline level that she was working to address during the client’s very first sessions.
“I feel like I’m failing them by not being able to keep them to the standard they were at prior,” Baker said. “I feel powerless and that I am bad at my job because I see so little progress.”
Parents often have to serve as interim therapists, a role they’re not trained to perform
Parents who have been tasked with the impossible – working, homeschooling, and managing a home all while trying to support their children with disabilities – say they still feel overwhelming guilt for not being able to do more for their children.
“The main emotion for me right now is guilt,” said Nili Isenberg, whose 7-year-old son Eli has Angelman syndrome, “because I constantly feel like I’m neglecting something.”
Eli can’t speak or walk, and his communication is so limited that Isenberg and her husband can’t tell when Eli is hungry or full. They keep him on a regular schedule to ensure that he eats at appropriate times.
Before the pandemic, Eli was enrolled in a public special education school and got about four hours a week of therapy, including equine therapy, speech therapy, feeding therapy, and physical therapy.
Currently, he’s only getting virtual physical therapy. But this requires Isenberg, a middle school teacher with two other children, to get on the floor with her son and follow the therapist’s commands. It’s physically demanding, and Isenberg isn’t sure if she’s even doing it correctly.
While serving as her son’s defunct therapist, Isenberg, who lives in Los Angeles, is also overseeing her other two sons’ Zoom sessions and her own classes that she teaches. Even still, Isenberg said she can’t help but feel like she’s not doing enough.
The Department of Education didn’t give specific guidelines for serving children with disabilities
Compounding the issue for students like Eli is the fact that the Trump administration put forward only a vague set of guidelines for schools to meet for students with disabilities.
The Department of Education allocated more than $US16.1 billion in funding from the CARES Act to enable children to keep learning, but it left it up to the states to determine how to spend those funds. (A group of Democratic senators are requesting nearly $US12 billion in the next federal coronavirus aid bill to support students with disabilities.)
While it dictated that online learning must be available to students with disabilities, it didn’t specify how; it also didn’t provide guidance on alternate curriculums or services for students without access to devices or WiFi.
“The people closest to their students know their needs the best,” Angela Morabito, US Department of Education press secretary, told Insider, “and we rely on them to use this funding to respond to the educational needs of their communities.”
Some school districts apparently interpreted the guidelines to mean that they were exempt from offering up services to students with disabilities altogether, which Secretary of Education Betsy DeVos said she found “extremely disappointing.”
There’s already one class action underway in Pennsylvania where the families of two children with autism say the children were deprived “life-sustaining” therapies and education during the pandemic, a violation of both state and federal law. The decision could potentially impact thousands of children with disabilities in similar positions.
Parents of children with disabilities who have had positive experiences say it was due to the teachers’ commitment
But parents of children with disabilities who have had positive experiences with remote learning say it doesn’t require funds or much innovation, just care and consistency.
Sura Rozenberg’s 5-year-old son, who has some social struggles, is a student at the ASD Nest Program, a partnership between New York University and the DOE. Rozenberg said the virtual learning has been so successful that her son’s reading and handwriting has improved since school closed.
The key, she said, is teachers and therapists committing to showing up for their students and modifying the program to their needs.
“His teachers are so devoted. They really, really care,” Rozenberg said. “I didn’t realise that’s not how all public schools were handling it.”
But even the most well-meaning educators and therapists can’t reach every student remotely, especially ones who are young and have severe disabilities.
Greaves, for her part, trusts that the teachers at her son’s school are trying their best. But due to the circumstances, there’s not much they, or she, can do to engage her child.
“My heart is broken,” Greaves said, “because I know he has it in him.”
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