The past few weeks have been a challenge for Susannah Harnden. She works from home as a psychotherapist doing telehealth while overseeing the education of her two children with developmental disabilities.

She typically wakes up around 6 a.m., the same time as her 17-year-old son, and gets to work making schedules while preparing meals and then having her children start on classes around 8:30 or 9 a.m.

The Cape Elizabeth mother tries to squeeze in her own work afterward or during the few hours per day that a behavioral health professional comes in to work with her son, who has Down syndrome and is deaf.

“It’s really hard, and I know a lot of parents feel really guilty, like they can’t maintain or keep up with everything that needs to be happening,” said Harnden, 46.

With schools across the state closed for the rest of the year because of the coronavirus outbreak, parents everywhere are feeling overwhelmed. But for parents of students with disabilities, those feelings are compounded by worries about whether their children will be able to access the remote learning plans their school districts have implemented, a lack of access to in-home and community support as some providers have closed, and demands on parents to provide more supervision than traditional learners require.

“They’re worried about therapies not being provided,” said Carrie Woodcock, executive director of the Maine Parent Federation, a nonprofit that provides support for families of children with disabilities or special health care needs.

“They’re worried about accommodations not being provided. We’re hearing more from parents who do have access than those who don’t, and they’re concerned about how to implement their child’s IEP (individual education plan) at home.”

Across the state, almost 18 percent of Maine’s 182,000 students are enrolled in special education, though the level of need of individual students varies.

When schools initially closed because of the virus, some districts shied away from providing any remote learning out of fear they couldn’t provide equitable access for everyone.

That prompted U.S. Secretary of Education Betsy DeVos to issue guidance saying schools shouldn’t use federal law about educating students with disabilities as an excuse for not providing distance learning.

Although that improved access, districts in Maine are still “all over the map” in terms of what they’re providing students with disabilities, said Atlee Reilly, managing attorney at Disability Rights Maine. He said much of how remote learning for students with disabilities, and others, will turn out depends on the resources available both at home and from schools.

“This will impact some kids much more than others,” Reilly said. “The family situation and the resources the families have available to them, those are laying bare a whole bunch of inequality in terms of how some families are experiencing this unprecedented disruption versus others.”

Woodcock, of the Maine Parent Federation, is also the parent of a student with Down syndrome, a sixth-grader at Saco Middle School. She said her group recognizes there is a need for flexibility around the federal requirements. She said she is trying to advise parents of special education students that while no one is getting a full education right now, it’s also important to advocate for themselves if their child can’t access remote learning.

“It’s hard because parents are trying to balance their legal rights, but they’re also trying to provide their child with an education at the same time,” she said. “We’re trying to ease parents’ minds and say, ‘Let’s not worry about making sure you’re getting everything in the IEP. Let’s worry about what you are getting and how it’s working for you at home right now.'”

In Westbrook, Sarah and Tim Sawyer said the school department has done a great job of handling the remote learning needs of their sixth-grade daughter, Lily, who has autism and attention deficit hyperactivity disorder, or ADHD. Teachers have been sending daily emails to check in and organizing video conferences to answer questions.

But there are things Lily gets at school or through service providers that aren’t accessible now, like a specialist who normally meets with her weekly to help her stay organized, or regular occupational therapy from a pediatric development center that is currently closed.

When the virus struck, the family was in the process of getting a new behavioral health professional to work with Lily at home. The process was put on hold briefly until her parents learned this week they would be able to speak by video conference with a new professional starting next week.

“I think the big thing for kids with special needs is it’s really hard to replace the individual attention they get from a special ed instructor or resource teacher,” Tim Sawyer said.

“And I definitely don’t have the trained skills to know (how best to educate her),” Sarah Sawyer said. “Yes, she’s my kid and I know a lot about how her disability works for us at home, but as far as getting stuff done for school, that’s a challenge.”

Deborah Mullis, director of student support services in Portland Public Schools, the state’s largest school district, said many of the challenges facing special education educators mirror those of the general population. Schools worry about access to food and technology in addition to trying to replicate what would normally be available.

“Certainly we have not been able to enter homes to offer that level of support that we would have in a classroom setting,” she said.

Instead, teachers have had to get creative and schools have tried to pair up students with the staff who know them best to check in on them.

Still, parents in some districts haven’t been satisfied with what’s been made available to their children. Linsay Fitch of Jay said there’s been a stark contrast between the remote learning available to her son in kindergarten, who is in a general education classroom, and her son in first grade who has autism and is in a special education classroom.

The first week schools were closed, Logan, the kindergartener, brought home a packet of material to finish in the next few days. His teacher has been sending “about 17 emails a day” and recording videos of herself reading for the students to watch.

In contrast, Fitch’s first-grade son, Levi, had some take-home work that he received early on after the school closed, but it was too difficult for him to do on his own. Communication with his teachers has been sporadic.

“It was a lot of me advocating and saying, ‘This isn’t right. We don’t have enough stuff,'” said Fitch, 36.

She said trying to parent, teach and advocate for her four children has been difficult, and until last week, when her husband was laid off for the remainder of the year, she has been doing it on her own. Normally a behavioral health professional comes into her home a few times per week, but the provider has stopped in-home visits because of the virus.

“It’s extremely overwhelming,” Fitch said. “They basically are expecting us to not only be their mom, but their therapist, their (behavioral health professional) and their medical appointment makers. And all that stuff we’re having to do via Zoom or online video chats. It’s a lot on one person’s plate.”

Woodcock said she has been reminding parents to be kind to themselves and know they are doing the best they can.

“Every child is going to regress,” she said. “Yes, our children with special needs will regress more. Yes, that’s a really hard pill to swallow, but it’s also a time and place nobody has ever experienced before. So be kind to yourself.”

Establishing a routine is also a good way to control behaviors and allow for more effective learning to take place, Woodcock said. In her house, every day starts with the Pledge of Allegiance, which her daughter does over the video chat app FaceTime with her education technician from school.

“It’s those little things that have really helped,” Woodcock said. “It really makes a difference in getting her motivated.”

In Cape Elizabeth, Harnden said she also tries to stick to a schedule for both her children, but she said it’s been frustrating and there are mornings when “I’m definitely in tears.”

Harnden’s son, Bela, is a junior at the Governor Baxter School for the Deaf at Portland High School and also attends the Portland Arts and Technology High School, where he studies gardening and landscaping.

He does his classes for Portland High School online and is supposed to do at-home activities to fulfill the requirements of the PATHS program. “He can’t do any of this independently, so he needs me sitting with him,” Harnden said.

On a recent morning the pair were working in their backyard garden, where Harnden showed her son how to prepare a bed for seeds. Bela worked on spreading the dirt but was quickly distracted by a tennis racket and other toys in the yard.

He soon wanted to go inside, and used sign language to communicate with his mother through the window. She signed back but admitted her communication is not as good as that of Bela’s teachers at school.

It has been hard to explain why the family can’t go anywhere or make as many trips to the grocery store, an activity Bela usually enjoys. Instead they’ve been staying home as much as possible, taking frequent walks in the woods, journaling and doing home projects.

Harnden’s 21-year-old daughter, who is a student at Strive University, a residential program for adults with intellectual and developmental disabilities, also frequently needs to be re-directed by her mother while she does online classes.

“I don’t think it’s too much for them, but it’s a lot for me to manage for them,” Harnden said. “It’s funny talking to some people saying how bored they are, which I can totally understand, but I have never been so busy my entire life. I’m up at 6 a.m. getting ready for the day. I have a huge list of things I’m trying to get done, and it doesn’t really end until I put my son to bed at night.”

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