As hard as these quarantine months have been on parents, they have been even harder on families with children who have special needs.
Many saw services vanish when states shut down, and they worry what comes next.
As a mom of two kids with special needs, Joanne De Simone is no stranger to the challenges of parenting, but with schools closed, she and her husband John are now on duty around the clock. Their son Ben has lissencephaly, a brain disorder that puts him at an increased risk for complications if he gets COVID-19.
“I think that the general ed population gets to focus on, ‘this will be over in the near future and we can move on with our lives even if it’s a little bit different.’ Except our future does not look like that at all,” says De Simone.
Ben’s familiar way of life is now completely upended. He used to get over nine hours of school, programs and therapy every day. With online learning, though, it’s eight hours per week.
“We’re struggling to try to keep him engaged,” says De Simone. “I don’t have physical therapist hands. I don’t know what they’re feeling.”
At 21, Ben’s now aging out of the educational system with no safety net. At the same time, De Simone also tries to manage the schoolwork and progress of Ben’s younger Brother Sebastian, who is on the autism spectrum.
“I’m watching how long it takes him to do things. And I don’t know what this time is going to do to push him back,” she says.
It’s a sobering, new reality for the over 7 million students who receive special education in the US. That’s 14% of all U.S. public school students.
Those students include Beck Williers, who is visually and hearing impaired and has been without his interpreter for weeks.
“The music teacher was trying to do a music class on Zoom,” says his mom Michele Williers, “And I will tell you, my son asked not to be part of it anymore. He didn’t know who to look at first. He didn’t know where the teacher was, where his interpreter was.”
Michele, still working full-time herself, now sits by his side for therapy online, but she says he’s missing the face-to-face interaction with those who understand his needs.
She worries about what will happen if school doesn’t re-open this fall.
“I don’t know, mentally and emotionally, if that happens, how we can continue to sustain like we are now. I think our child needs that environment. There could be a second pandemic in our society … people don’t realize the importance of bringing school back at some level.”