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With Schools Closed, Parents Of Kids With Disabilities Struggle To Keep Them On Track

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Courtesy Amanda Hutter
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Isaac Hutter plays at home. Isaac was diagnosed with anxiety and ADHD when he was a year old.

Families across Maine are facing a brand new challenge right now, with thousands of children being educated at home. And it's especially challenging for families of children with disabilities. Schools and agencies say they have been quick to adapt and are using video and phone interconnects with student. But the new format is leaving some families exhausted - and worried that their kids might be falling behind on a number of fronts.

On a recent weekday, Amanda Hutter races around her living room to keep up with her four-year-old son, Isaac, inside their Scarborough home. "All right, you're gonna keep your feet on the floor. Then you're gonna give me a high-five," she says.
 

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Credit Courtesy Amanda Hutter
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Brian and Amanda Hutter with their son Isaac.

Isaac has come a long way, Hutter says. At about a year old, he was diagnosed with anxiety and ADHD. He also has behavioral issues and some speech delays. But over the past few years, Isaac has been receiving services from clinicians and providers at a specialized preschool in Waterboro. And Hutter says it's made a big difference.

"We were able to do things such as grocery shopping as a family. We were able to have what others would consider normal moments with your family," Hutter says. "He was doing better at school, he was learning better, he was happier. He was making friends."

But a few weeks ago, Isaac's preschool closed. Hutter left her job to stay home and care for him. Isaac's teachers are still working with him remotely. But Hutter says without the hours of support at school each week, her son is struggling to maintain the progress he had made.

"He still had meltdowns and stuff like that, but they'd be 20 minutes. Now, without the support and since the pandemic, his meltdowns are four hours or more," she says. "And it's hard to go from having this village and having 50 hours plus a week of the village helping to raise your child, to you. And you alone."

"It's really, really confusing and it's really overwhelming for parents," says Maine Parent Federation Executive Director Carrie Woodcock.

Woodcock says families across Maine are struggling to adjust to the new normal of "home schooling," and says the transition is particularly hard for students with disabilities who no longer have in-person contact with trained staff and specialists.

"We're telling our parents, 'You're not a teacher. You don't have the degrees that the teachers at the school have. So you can't it expect that you're going to be able to provide the education that your child is, getting at school and do the best you can. Try not to get overwhelmed. Take it one day at a time,'" Woodcock says.

Parents aren't completely alone, as some services are continuing online. On a mat outside of Amanda Hutter's house in Scarborough, a therapist talks to Hutter's son Isaac through a tablet placed on the ground. Jason Golowski, with BDA North, a behavioral consulting group that operates a center in Waterboro, says clinicians are using this technology as a way to coach parents on dealing with behaviors.

"And we'll walk you through that," Golowski says. "So if you're working with the child, we can give you the tips and strategies that we would typically do - you know, kinda like the little nuances that we might not even realize we do, but when you see somebody do something different, we can provide those tips and strategies."

The Maine Department of Education says many schools are taking a similar approach and using online communication tools to keep providing services and even bringing classes of students together.

Amanda Hutter says the online guidance for her son isn't exactly the same as the services he received before. But she believes it's making a difference for Isaac.

"And I am so grateful to the clinical associate that we have, who loves my son unconditionally, where she has given us the ability to be able to learn skills, not jump in and do it for us," she says, "and just let us do whatever works."

But beyond the efforts by schools and agencies, questions remain about what the future will hold for the support systems for children like Isaac. Michelle Hathaway, the director of the Auburn-based Margaret Murphy Centers for Children, says she wonders whether some social service agencies will be able to stay afloat through the pandemic.

"And that's also a huge challenge for providers like us across the state right now," Hathaway says. "We're fee-for-service providers. And if our students can't come to us, we aren't reimbursed. And so the little bit we're able to do is just a tiny percentage of that revenue before. And it ultimately will impact many providers across the state."

For many families, the uncertainty lies in how their children will be able to make up for the months of interrupted developmental progress.

Some schools have already signaled that they're planning to offer extra supports when buildings do eventually re-open, potentially in the summer.

Superintendent Bill Braun, of AOS 90, near Baileyville, says he's hoping to use money from the federal relief bill signed last month. "And at least giving the students a chance to catch up and make up and get their get their things together. And if it continues into next year we'll use those dollars to try to support students beyond the school day."

But in the meantime, schools in Maine have been recommended to move to online learning until the end of the academic year. And that means at least a few more months of learning from home.