Parenting youngsters with developmental disabilities throughout COVID-19
“Parents have been on a plane that is currently in distress for months, and they still are fiddling with their own oxygen mask, trying to figure out how to get it on,” says David Anderson, the senior director of national programs and outreach at the nonprofit Child Mind Institute in New York.
But for caregivers of children with mental health disorders or learning disabilities, these challenges have been amplified. Parents have had to oversee online schooling without regular assistance from the specialists who usually provide in-person support tailored to their children. The effects of the pandemic have manifested differently in students depending on their diagnoses and circumstances.
For students with attention-deficit/hyperactivity disorder (ADHD), the clear hurdle was no longer having the individualized assistance they would have in the classroom, through visual aides and other accommodations. The same was true of support systems offered to students with learning disabilities—from personalized instruction to reading interventions—as well as kids with autistic spectrum disorder, who often rely on occupational therapists and speech-language pathologists. “Those things became really difficult for schools to continue to follow through on, not necessarily because of a lack of intent,” Anderson says. “[For] one of the families that I worked with, the very person who was doing reading interventions and academic support really didn’t have the same bandwidth because she didn’t have childcare for her own children.”
With kids with depression, it’s been
a high-alert situation pretty much the entire pandemic.”
David Anderson, senior director of national programs and outreach
at the Child Mind InstituteFor kids suffering from anxiety and mood disorders, the pandemic has been an endless source of stressors, and even more so as schools reopen. “What we know is that anxiety is likely to look better while social distancing, and look a lot worse when we return,” Anderson says. “With kids with depression, it’s been a high-alert situation pretty much the entire pandemic.”
Parents, in turn, have had to step into roles they may have little to no experience with, from therapist to behavioral specialist to social worker—all the while going into work or holding down a job from home. We talked to three mothers of children with mental illnesses or learning disabilities about how they have coped during the pandemic, and what the impact has been on their working lives:
“I worry every moment of every day: Is he safe? Is he alive? Is he happy? Is he healthy?”
In pre-pandemic times, Cheryl Rosenberg’s son got through the day with the guidance of a school psychologist and a full team at the Child Mind Institute, from a psychiatrist and therapist to specialists in dialectical behavior therapy. “When you have very severe anxiety and depression, your ADHD is much, much worse,” Rosenberg says. “He needed help studying; he needed repeated reminders from teachers. It was very difficult to keep him organized and make sure his work was getting done.”
As a single working mother of four children—two of whom have ADHD—Rosenberg was already stretched thin. “It’s been really, really challenging,” she says. “I probably have not had a good night’s sleep in two years.”
Under lockdown, the delicate balancing act only grew more strained. “I have been allowed to work from home, but it’s been very difficult,” she says. “I have four kids at four different schools.” The chaos and uncertainty of the pandemic was especially hard on her son, who started having panic attacks—something he hadn’t experienced before. “He could never pinpoint why,” she says. “But he kept saying, ‘It just feels endless. We don’t know what’s happening.’” He also stopped attending his virtual classes and distanced himself from friends.
Unlike her other kids, Rosenberg’s son has resisted in-person interactions with friends since the pandemic started. “I can’t force him to hang out with his friends,” she says. “But I think the lack of social interaction creates anxiety in and of itself. The other hard piece of it that can’t be stressed enough is the uncertainty. That’s really hard for anyone, and it’s even harder for someone who has a difficult time seeing themselves as having a happy, healthy future.”
For Rosenberg, who has primary custody of all four children (her ex-husband takes them one day per week) her son’s well-being has been a near-constant source of stress. “I worry every moment of every day: Is he safe? Is he alive? Is he happy? Is he healthy? When he would go to school, it’s not that I didn’t have to worry, but there was nothing I could do. I didn’t bear the responsibility during the time that he was at school.”
Rosenberg’s employer has welcomed flexible schedules. But since Rosenberg works at a nonprofit that supports schools, her work hasn’t slowed down during the pandemic—and she has other children to worry about. “I have three other kids,” she says. “They have their own needs.”
The one silver lining, Rosenberg says, is that she is able to spend more quality time with her children. “I was out until 10 o’clock every night with one kid or another, and it was overwhelming the amount of hours I would spend after work running from place to place,” she says of her pre-pandemic schedule. These days, one of her kids often plays sous-chef, while another likes to bake with Rosenberg. “It’s not very much time,” she says. “It’s 20 to 30 minutes maybe every day. But it’s a big deal.”
“When that routine was pulled out [from] underneath them, that was the hardest part”
When her two children were diagnosed with dyslexia within two years of each other, just a few years after losing their father to cancer, Lisa Domenico Brooke decided to make a change. “They just couldn’t get the support they needed in Portland, Oregon,” she says. “So I picked up and moved to New York City.”
For a few years, they attended the Windward School, which caters to students with language-based learning disabilities like dyslexia. But Brooke eventually realized they would need more assistance through high school. They moved back to Portland, but Brooke sent her son to the Gow School in New York, a boarding school for students with language-based learning disabilities, where his sister later joined him.
In the meantime, Brooke started her own business and was gearing up to officially launch in June. “I was 60 days from launching when I [got] a phone call,” she says, “telling me my kids have been quarantined because they had potential exposure to COVID-19 from a school trip to Italy in February.” They flew home to Portland about a week later, when their school closed and switched to digital learning for the rest of the academic year.
While the school was well-equipped to switch to online instruction, Brooke says it was a tough adjustment for both of her children. The three-hour time difference was a hurdle in itself, since they had to be up early for classes. “We all know that a teenage brain doesn’t do well on not a lot of sleep,” Brooke says.
The format of the instruction was also not conducive to their learning style. “The challenge was it wasn’t live instruction,” she says. “There would be maybe a video that they watched, and then they would go ahead and start their homework. These kids don’t learn that way. Most of them are auditory learners, so they need live instruction.” As teenagers, Brooke says, her children actually need more help than they did when they were younger.
The Gow School had provided the sort of structure that was hard for Brooke to replicate at home. “They had house chores to do before they went off to do schooling,” Brooke says. “They always had tutorial at the end of the day, where they could set times up with their teachers if they needed extra support. Everyone was required to participate in athletics. And then from athletics, they went to dinner, and then from dinner, they went to study hall. So that is prescribed for every student regardless of how well they’re doing. And when that routine was pulled out [from] underneath them, that was the hardest part, I think.”
I think about the families that work in service industries or absolutely have to go out. I don’t know how they do it.”
Lisa Domenico Brooke, parentParents were encouraged to create a similar routine for their children, but Brooke found it challenging to oversee their schedules while juggling work commitments. That included serving on two boards, which Brooke took a step back from. “I just basically said time-out—this is the priority,” she says. “I think about the families that work in service industries or absolutely have to go out. I don’t know how they do it. I count my blessings every day that I can be home and be here.”
Brooke has put her company’s launch on hold, in part because it’s a high-end product. (She was also using manufacturers based in Europe, who were forced to shutter operations due to the coronavirus, though she has since found stateside manufacturing partners.)
And as of now, her children will be going back to school for in-person learning in the fall. Brooke entertained the idea of pulling them out for a year and taking a leave of absence. But both her kids insisted on returning to school. “They feel good about themselves [there],” she says. “My entire family has said they’ve seen a major change in both children, in their confidence level and how they approach life.”
“I don’t think enough has been done for kids with special needs who are home”
When the coronavirus hit, Shauna Parsell, a field installer for an HVAC company, was let go almost immediately. But that meant she could stay home with her 7-year-old son, who is autistic and needed additional support for remote learning. “He also has an individualized education program, which makes it even more difficult,” Parsell says, adding that he used to get care like speech and occupational therapy. “Now, he’s just home and we’re just looking at a computer screen.”
Under normal circumstances, her son would be in a general education classroom with an aide. “He had a teacher’s assistant who would use a whiteboard to instruct him,” she says. “If it was obvious that the classroom was getting overwhelming and too loud, she would take him for a break. “He would also be given the option to complete an assignment in a quieter space, like the resource room.” If he was working on a writing assignment, for example, he would have the option to type it instead.
Now, he’s just home
and we’re just looking at a computer screen.”
Shauna Parsell, parentWhen the school moved to remote learning, Parsell says they were given an iPad, but not a keyboard to go with it. It was also impossible for her son to continue therapy remotely, which involved working on gross and fine motor skills. “There were suggestions made to me,” she says. “But between trying to maintain a household and just [getting] my 7-year-old to sit down and do a couple of things for his general education class—and [with] a preschooler at home—there was no way to follow through with any therapy.”
Since the pandemic started, Parsell says she has had limited contact with the occupational therapist and social worker who ordinarily help her son at school. “I don’t think enough has been done for kids with special needs who are home,” Parsell says. “I know this is a new situation for special-education teachers. But little to nothing has been done to give me any type of support at home—and that’s frustrating and hard to deal with.”
A few months into the pandemic, Parsell and her husband both went back to work; Parsell was considered an essential employee at the time. (Parsell and her husband are divorced and more or less split custody of the children.) She was able to send her younger child back to their childcare center two days a week and enrolled her other son in a summer program that also offered therapy. At the time, Parsell’s niece was able to step in when they had gaps in care, but that won’t be the case much longer. “She’s going back to school come fall,” Parsell says, “Now I’m like, I don’t know exactly what I’m going to do.”
Parsell had originally planned to send her younger son to an on-site childcare center at her other son’s elementary school. Now that the school is remote for at least the first semester, she has limited options. “I tried to see if I could get my 4-year-old into the same preschool he’s at now for the fall, and they’re already full,” she says. “I have a tour at another preschool to see if I can possibly get him in there, but it’s also the cost that I’m worried about.” It could cost more than $1,500 per month for Parsell to send her son there full time—an expense compounded by the fact that Parsell recently switched jobs and took a pay cut.
“It’s a very delicate balancing act,” she says. “I’m still just trying to figure it out day by day.”