Distance learning presents extra challenges for parents of special needs children

'Every day is hard'

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Denita Johnson, like many parents these days, finds life a constant juggling act. Between working from home and caring for two children, a first grader and a one-year-old, it's difficult to find balance.

For Johnson, though, the struggle of helping her school-aged child with distance learning is compounded by the fact that seven-year-old Christian has autism.

"It's very, very hard," said Johnson. "Consistency is huge for children with autism." And with school no longer in session like it was pre-pandemic, adjusting has been difficult.

Prior to the COVID-19 shut-downs, Christian had already had some upheaval at his District 91 public school. Johnson said he had a rough start to the school year, with a mixed kindergarten and first grade class initially and more than one teacher. In fact, he'd had a brand-new teacher for only about a month before school closed.

Just when it seemed like things might be settling into a routine at school, the COVID-19 crisis struck.

"It was completely a shock to his system when the schools closed," said Johnson. "He didn't understand why he couldn't go anymore." Because his language is limited, it was difficult to communicate to Christian why things were suddenly so different. He had meltdowns for two weeks when school was first cancelled.

"If a school bus drives by the house, he doesn't understand why he can't be on it," said Johnson. "He doesn't understand why we can't go to the park."

And remote learning has been a huge challenge. Zoom meetings, which many of the teachers use for communicating with children, is an impossibility for Christian, who won't even sit still to watch television.

"It just doesn't work for him," said Johnson. "He needs one-on-one, individual, hands-on instruction. He gets distracted easily and needs redirection."

Johnson has found remote help from the support services at school invaluable. The art teacher sends instructional videos with projects for the kids, she said. She can follow the instructions to help her son. Detailed steps on using Christian's Assisted Learning Device have been helpful. The occupational therapist reaches out regularly with focused activities, and the physical education teachers sends out weekly exercises for the kids.

"Without music, OT, gym, art and speech, I would have no resources or direction," said Johnson.

As for academics, however, Johnson's felt the need to become Christian's full-time teacher. Worksheets are sent home but without instruction. And once she's completed them with Christian, she's not sure what do to next.

"I feel like they don't care about his academic life," she said. "It's over a month into stay-at-home, and as of now they should have been collaborating and figuring out how to help kids like Christian. I feel completely abandoned by his teacher."

At first, said Johnson, she cried. Then she said she decided to start googling. "I thought, 'Let's try to maintain what he's learned.'"

She googled. She downloaded work. She found a free website with site words. She bought books at Costco. And she's become more than a mother.

"I was already dealing with his behaviors because of his autism. And now I'm trying to be his mom and his therapist and his teacher. It's hard. Every day is hard," said Johnson.

Her priority academically, said Johnson, is to make sure he doesn't lose what he's learned so far. He knows his name, letters, numbers, and simple addition, among other things, said Johnson.

"I pray every day that he doesn't regress," she said. "He's come so far. But what if I'm not doing enough? What if I'm not doing it right?"

Her day begins at 5 a.m. when she wakes up to get in a few hours of her own work. After that she gets started teaching Christian. They take a break, then start up again in the afternoon.

"I'm lucky that my job is very flexible," said Johnson. "I can break up the day and schedule meetings."

One of her biggest fears right now is that schools won't be open again before she's asked to return to work. But taking things one day at a time is the only way to move forward.

"I just want people to know that Christian is autistic, but he's still a person," said Johnson. "Kids with behavioral problems or learning disabilities laugh at jokes and want to have fun just like everyone else. Their families want them to succeed. I just pray that someday we'll live in a world where resources for these children aren't so scarce."

The Review reached out to District 91 Superintendent Lou Cavallo on May 11 regarding this story. He said in an email: "I know nothing about these issues and no parent has brought any issues to my attention. In fact, I've only heard praise from parents about how our teachers have gone above and beyond for the students in these unprecedented times." He added that, "It also seems in bad character for the Review to write such a biased article without any verification, in my opinion." To verify, the Review held the article for a week to allow him time to respond to specific questions about special ed and remote learning, but he did not respond.

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Patty Duff Marino  

Posted: May 19th, 2020 9:57 PM

I miss my buddy Christian so much and admire your attempts at learning at home. There needs to be a better alternative to parents of Special Needs students in this unexpected time. We are all trying our best, family and school!

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