Children and adults with developmental disabilities have found their routines thrown off dramatically by the coronavirus pandemic, leaving those who care for them struggling to fill the gaps in their days at home.
For Suffolk County mother-of-three Chrissy Young, New York’s stay-at-home order has meant the end of the predictability that her sons Nicholas and Michael, who both have level-three Autism, rely on.
“You and I can say ‘Oh, we’ll go with the flow,'” said Young. “But when you’re dealing with people with disabilities, that’s not in their playbook.”
Nicholas and Michael, 10, and 8 respectively, now center their days around Zoom calls with their school — the Elija School in Levittown. While having something structured to anchor them has been a lifesaver, Young said, human contact from teachers and classmates has been impossible to replicate.
“Nothing is like seeing people, and holding people, and hugging people,” Young said. “But we’re doing the best we can.”
Compounding the issue, her sons have had to go without seeing the people they formed connections with at school — and with little to no explanation.
“One day they saw them and one day they didn’t,” Young said. “I cannot imagine, for my boys, what that was like.”
Young resists the idea that her sons are getting “used to” the new normal, but admits that there is far less trepidation now than when their routine was first interrupted roughly six weeks ago. “If they were able to walk back into that school they, would be doing cartwheels,” she said. “[But] I think the fear is less. The more you do the same thing, there’s a little less fear.”
To keep her kids — who are both non-verbal — occupied without having anywhere to go, Young and her husband have taken them on drives through Suffolk County, and opened up their backyard pool for them to play in after remote learning, but there’s only so much they can do while hunkered down.
“My husband and I have learned we’re really not that exciting,” she said.
Young attributes what success her sons have had during the pandemic to the Elija School, which has not only given students structure during the weekdays, but has also provided parents with training. “If my boys were not in Elija, I don’t know what this would look like,” she said.
While Michael and Nicholas have virtual learning to anchor their days, structure has been harder to maintain for adults with developmental disabilities who are not in a school program, according to Lynne Koufakis, who chairs the board of Life’s Worc, a network of group homes in New York City and Long Island.
Organizations like Life’s Worc have found themselves on the front lines of the COVID-19 pandemic but for Koufakis, who has two sons at home with developmental disabilities, the obstacle is twofold.
“It’s extremely challenging,” she said. “It’s frustrating. It’s mentally and physically exhausting.”
Many parents have had to rely on technology to help get them through these uncertain — and unstructured — times. “The computer is great, and a curse at the same time,” said Koufakis, whose children’s caretakers still take them out for exercise most days, but who are stuck spending the rest of their time inside in front of a screen. “They get addicted.”
While sheltering in place has not been easy for everyone, Young acknowledges that those with developmental disabilities are going through a completely different trial of their own.
“I cannot imagine — disabled people who cannot relay or express the fear that they have, the emotion that they have,” she said.
This story is part of an ongoing series about group homes on the front lines of the COVID-19 crisis, and the pandemic’s impact on those with developmental disabilities.