Parents Of Kids With IEPs Worry About Regression
It was a Monday morning at breakfast, 10 days into the quarantine, that JoAnna Van Brusselen first noticed the claw.
Her oldest daughter, Iolani Azul, 11, was sitting at the kitchen table in their house in San Francisco, her right hand curled up against her stomach. It reminded Van Brusselen of how her daughter had carried herself when she was an infant, before years of schooling, occupational therapy and guidance from teachers helped her overcome some physical and cognitive challenges resulting from a stroke in utero.
“I never show her any stress, because I don’t want that to seep into her, so I just said, ‘Hey, babe, don’t forget your right hand also needs to stretch,'” Van Brusselen recalled.
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But inside she was reeling.
Iolani “was never supposed to walk or talk and she does both,” Van Brusselen said. “How do I help her to not regress from all the skills she’s gotten from being in school for so long and getting help from so many professionals? In a way, it feels a little hopeless right now.”
Iolani is one of roughly 7 million children — 14 percent of all public school students — who receive federally mandated special education services because of their disabilities. Over the course of a typical school week, the fifth grader works with two teachers, three instructional aides and seven therapists. Not only does she need more specialized support than many students, but her vision challenges and other impairments can make online learning difficult.
Advocates, educators and parents say that kids with disabilities are particularly vulnerable as schools shut down to slow the spread of the coronavirus and turn to remote learning. In fact, when school districts first closed, some opted not to provide distance learning to any students, in part out of concerns that they wouldn’t be able to effectively serve kids in special education and would face lawsuits as a result. Guidance from the U.S. Department of Education prompted some school districts to reverse that decision, and many have ramped up efforts to offer online learning. But civil rights advocates remain concerned that a provision in the coronavirus package passed by Congress last week will let some districts off the hook for not serving kids with disabilities.
Less than a month into closures that could stretch to the end of the school year, the difficulties of homeschooling kids with disabilities are mounting.
For Van Brusselen, these past few weeks have been the most challenging since the period right after Iolani’s birth. Van Brusselen learned just a month before her due date that her baby had hydrocephalus, or an accumulation of fluid in the brain. Her doctors told her there was an 80 percent chance her daughter wouldn’t survive after birth and encouraged her to terminate the pregnancy. But Van Brusselen could feel the baby kicking inside her and hoped they were wrong.
Iolani survived. She learned to walk and talk, and after spending preschool with kids with severe disabilities, she entered general education classes in elementary and flourished. This fall, she’ll head to middle school.
The San Francisco Unified School District, where Iolani attends school, is gradually phasing in a plan for online learning. The goal is that by mid-April, teachers will offer virtual lessons and make alternatives available for kids who don’t have computers and Wi-Fi. The district says that special education teachers are helping to figure out what learning will look like for kids with disabilities.
So far, Van Brusselen says she’s been pretty much on her own.
That first week at home, she received a downloadable packet of activities from Iolani’s school, which she tried to work through, although she says they weren’t modified to take into account her daughter’s disabilities. Iolani needs constant guidance and supervision, and from 7 a.m. to 9 p.m. each day, Van Brusselen scrambled to keep her daughter occupied. They bounced on a trampoline, listened to music and worked on lessons Van Brusselen downloaded from a website for kids with disabilities. She tried with modest success to teach Iolani the card game UNO.
She also tried to keep up with her job as an education coordinator at the nonprofit Support for Families of Children with Disabilities. And she cared for her younger daughter, who is 18 months old. Van Brusselen’s partner works in accounting at a job that is less flexible than hers, so most of the child care fell on her.
Meanwhile, she tried to put aside the nagging fears about Iolani’s physical well-being. Her health is fragile, and up until three-and-a-half years ago she had seizures nearly every day. With the health system overwhelmed, Van Brusselen worries about what might happen if the shunt in Iolani’s brain that manages her hydrocephalus were to stop working and she had to be rushed to the hospital. “Please don’t let this be the moment that something happens to her shunt,” Van Brusselen said.
With each day, Iolani became more upset about being cooped up. There was only so much Van Brusselen could say to explain the situation. “She doesn’t 100 percent understand the coronavirus, but she’s very angry about it and keeps saying, ‘I hate it so much,'” said Van Brusselen. “‘I hate COVID-19,’ that’s been on repeat all week.”
By Friday, March 20, after enduring a series of Iolani’s tantrums, Van Brusselen posted on a Facebook group for mothers of children with disabilities asking for help. Another mom suggested putting Post-it notes on a wall with different activities that Iolani could choose from. For a few days, that helped. But by the next Monday, day 10, Iolani had lost interest in the Post-its.
On day 11, March 24, Van Brusselen received a stream of emails from Iolani’s teachers and therapists. They were checking in, not offering services, but it was still nice to hear from them, Van Brusselen said.
Iolani thought so, too. She got on the phone to say hello to one of her teachers. “I miss it. I miss my teachers, my friends,” she said in an interview later that day. “I miss learning.”
Van Brusselen’s fears about regression are shared by other parents. Kimber Rice, a mother of two who works as a family engagement specialist with the San Juan Unified School District in Sacramento County, Calif., is among them. Although her district plans to roll out distance learning in April, some of the supplemental materials initially provided by teachers weren’t accessible to her seventh grader, who has intellectual disabilities. But at the end of last week, she learned that the school would distribute Chromebooks and laptops, and that the one assigned to her daughter had accessible software that could adjust the size of font and read aloud.
Still, she wondered how her daughter would be able to keep up with lessons, especially if she couldn’t sit by her all the time. She also worried what sort of services the seventh grader would receive for her speech and vision impairments. “I’m stressed about how much of anything will be possible,” Rice said.
Amy Parham, in Los Gatos, Calif., said her son, who does not have disabilities, has been getting frequent communication from his school about classwork and assignments. But for her daughter, who has autism and Down syndrome, there’s been very little structured support.
Tom Carter, in New York City, said a teacher from his son’s specialized public school for children with disabilities has been in touch daily. But it’s been tough for Keenie, 17, who has severe autism, to get any learning done. The first week off, Keenie had a meltdown that lasted five days. The teenager was hyperventilating and inconsolable; he kept trying to pull Carter to the family’s car. Carter had to call his son’s doctor for a prescription of Xanax, which helps to calm his son in emergencies. “He’s pretty energy sensitive, so I don’t know if he was picking up on the general vibes of the planet or of his siblings,” Carter said.
Carter and his wife, Alex, spent the first week helping their six other kids get set up with online learning. This week they plan to focus on Keenie and trying to get him on a schedule of three structured hours of learning per day. “The minute anyone stops putting what I would call constant work into him, he regresses,” Carter said.
Under the Individuals With Disabilities Education Act, schools are required to provide a free and appropriate education tailored to the needs of kids with disabilities. The March 21 guidance from the Department of Education, prompted by some districts’ decisions to not offer any distance learning at all out of concern over potential lawsuits from families with children who have disabilities, asserted that the act should not stand in the way of schools providing online education.
“We remind schools they should not opt to close or decline to provide distance instruction, at the expense of students, to address matters pertaining to services for students with disabilities,” the agency said.
Still, some districts remain concerned about liability, said John Eisenberg, executive director of the National Association of State Directors of Special Education. There will likely be a patchwork of approaches across the country, he said.
Meanwhile, disability-rights and education advocates remain worried that the rights of students with disabilities will be undermined by the recent federal coronavirus aid legislation. Initially, the relief package included language that would have waived requirements that school districts provide a free and appropriate education to children with disabilities. The final version directs Education Secretary Betsy DeVos to report to Congress in 30 days on special education provisions she believes should be waived.
Miriam Rollin, director of the Education Civil Rights Alliance at the National Center for Youth Law, said she worries that DeVos — who in her 2017 confirmation hearing seemed to suggest that states could opt out of complying with the federal special education law — will not ensure that kids get the services to which they’re entitled. But Rollin said that in districts that are committed to these students, this could be a time for innovation.
Some districts are holding virtual meetings with parents about their children’s individualized education plan, said Denise Marshall, executive director of the Council of Parent Attorneys and Advocates, a nonprofit that advocates for children with disabilities. And some are providing customized distance learning that combines lessons tailored to kids’ needs with opportunities like virtual field trips, she said.
“We realize we’re facing unprecedented challenges,” Marshall said. She hopes to see schools and parents “really work together to innovate and individualize and make sure the families have the resources they need and there’s flexibility in the modes of delivery.”
Van Brusselen said she is cautiously optimistic about how online education might unfold for Iolani. But she worried she might have to take a leave of absence from her job to fill the place of Iolani’s instructional aides, who sit beside her in class and tailor her general education assignments to her needs.
On day 12 of the quarantine, Iolani fell apart. “She was going back and forth between, ‘I am scared for my life,'” Van Brusselen said, “and ‘I need relief.'” She refused to do any of the activities her mother suggested. After the tantrums and tears subsided, Van Brusselen felt a sense of unease. It reminded her of how she felt after Iolani was born, when the girl’s health was so precarious that she spent every day wondering if her daughter would make it to the next. “This is the first time since having her I feel again like I don’t know what’s going to happen tomorrow,” Van Brusselen said.
Even if she can find ways to tailor Iolani’s assignments, Van Brusselen said, she won’t be able to do the work of the school nurse and the many therapists on Iolani’s education team. “I’m not a therapist; I’m not a nurse,” she said. “I’m just a mom.”
This story was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education.
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