(NEW YORK) — Being a parent is never a cakewalk, but parenting during a pandemic is an entirely new challenge for millions of American families of children with special needs.
“Everything has radically changed,” said Melissa Winchell of West Bridgewater, Massachusetts, whose 10-year-old daughter Moriah has both Down syndrome and autism.
For parents like Winchell, the shuttering of schools has meant the loss of a dozen or more helpers throughout the day — a support network that does everything from teaching special needs children how to grip a pencil or zip their coat, to social skills and handling full-blown meltdowns.
Many parents have been abruptly thrust into the full-time roles of teacher and caregiver while working their paying jobs from home.
ABC News was given an inside look at how four families around the country are coping with the disruption to their lives and routines, mounting financial pressures and the imminent health threat posed by the novel coronavirus.
“Danny is medically fragile. So, the virus itself would be pretty devastating to him. So we have that we’re contending with,” said Megan Scully, a mother of three in Washington, D.C., whose 4-year-old son has a rare brain disorder that puts him at increased risk from COVID-19.
“One of the fights for us is keeping the ‘front line’ for us here at home instead of possibly having to go to the hospital,” said Chris DeBatt, Danny’s father. “So we are being very, very careful with the social distancing measures.”
Rob Gorski of Akron, Ohio, a single father of three autistic sons and author of “The Autism Dad” blog, says the health risk for his eldest son, Gavin, has kept the family strictly quarantined inside the house for more than three weeks.
“One of the things that he has right now is a compromised immune system,” Gorski said. “It’s pretty stressful worrying about trying to keep him healthy and safe by not exposing him to anything really.”
“Everybody’s been sort of climbing the walls,” Gorski added. “We have a small house.”
The sobering, cloistered reality has been made more difficult without the support network many parents of young special needs kids have come to rely on: home health aides, therapists, coaches and teachers.
“They’re not going to get the therapies they need. There’s not going to be the socialization that he needs,” said single mother Opal Foster of Silver Spring, Maryland, who worries about the impact of isolation on her son Jeremiah, who has Down syndrome.
“He definitely misses his friends,” Foster said, with Jeremiah by her side. She, like many parents, is scrambling to arrange Zoom or Skype video-chats with familiar faces to try to recoup a sense of normalcy.
Winchell, an assistant college professor, is toggling between daycare for her 10-year-old daughter Moriah, who has autism and Down syndrome, and her job teaching and advising hundreds of students.
Her employer expects her to maintain a full-time course load online, lecturing, grading papers and overseeing a graduate program.
“I can’t do a full load,” said Winchell, describing herself as someone who prides herself on working hard and being able to juggle priorities.
“To even admit that this is not possible, is not even in my vocabulary,” she said.
Scully, a news editor, and her husband Chris DeBatt, an Army National Guard contractor, have also become full-time caregivers while educating their other sons, ages 2 and 7, and keeping up with their day jobs.
“We are homeschooling a second-grader, and we are trying to get Danny’s therapies in too the best that we can. But we just cannot replicate what they can do at school,” said Scully.
Danny DeBatt was just beginning to learn how to communicate when the pandemic closed his school, a possible disruption to his progress.
Many parents are concerned about the pandemic’s lasting impact on their children’s emotional development.
“The grief almost feels fresh to them every day, almost like they’re re-experiencing it all over for the first time,” Winchell said. “So we’re having a lot of, you know, just daily crying.”
“I taught her the word ‘coronavirus.’ She knows the word ‘COVID-19.’ It’s to the point now that she calls it ‘stupid coronavirus,"” she said.
Then, there’s the cabin fever.
The Gorskis haven’t left their home in more than three weeks, a situation that has tested their patience with each other and family communication skills.
“The lack of adult contact is pretty challenging,” said Rob Gorski. “I love my kids, and if I could be on lockdown with anybody, it’d be with my kids. But it does sort of take its toll.”
During a family conversation recorded for ABC News, Gavin Gorski, 20, said he is “always trying to find ways to stay relaxed and stay calm,” while 14-year-old Elliot said the “most important” coping mechanism has been sleep. And 11-year-old Emmet Gorski said his advice is to “stick with your parents, like we stick with our dad.”
“I don’t think so much about how to get through it, I just know that, like, my kids are relying on me and I have to do whatever I have to do,” says Rob Gorski.
With much of the country binge-watching television shows and reading books, even as economic worries loom in the back of their minds, parents of kids with special needs who have recently lost their jobs are reeling.
“We just don’t know how long it’s going to last,” said Foster, who was laid off from her job at a printing company last month. “I would love to say that everything will go back to normal tomorrow, that you just snap our fingers and everything will be back just the way that it was. But it won’t.”
“Trying to keep a positive attitude,” Foster adds. “Jeremiah is always a beacon of sunshine as it is anyway.”
A focus on the moments of love and laughter is a top survival technique, the parents told ABC News.
“It may not be pretty, and it may not be joyous, and it may not be how you want to get through something, but you’ll get through it,” said Chris DeBatt. “And there’s something on the other side.”
These parents of special needs children offered a poignant reminder that there is light at the end of the tunnel — and light in those we love.
“I think this sense that nothing is permanent, that life’s not a given, that life’s so fragile — that’s, I think, what disabled families know,” said Winchell. “That’s the wisdom that we’re bringing into the experience of quarantine and into COVID.”
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