DOWNERS GROVE – On a Wednesday afternoon, Joey Dorsey is at the Yorktown Mall, his aide, Dave Mata, beside him. While the two were on a mission to shop for gifts for Dorsey’s dogs, they were in no rush to make a purchase and head back. They decided to make the most out of their trip, circling the top floor, walking past store after store and around the food court.
Every now and then, Dorsey would jump up or scream behind his mask, especially when he and Mata were near the food court. Mata said he’s taken those gestures to mean Dorsey is excited. Bright, neon lights beamed from each booth, and shoppers were greeted with a warm aroma of familiar comfort foods, including hearty burgers, sweet cinnamon buns and one of Dorsey’s favorites, pizza.
For Dorsey, those trips to the mall or sometimes the grocery stores, the park – even the local Target – with Mata play an important part in his life. The short outings help Dorsey, an autistic teen, engage with his surroundings, connect with people and practice social skills beyond his home and classroom.
With Mata, the 19-year-old from Downers Grove has more time to work on his everyday skills, including using his “talkbox,” a hand-held keyboard with built-in voice responses, more frequently, and completing small tasks independently – crucial, teachable moments that can’t be replaced by remote learning.
“It’s just not fair to Joey to not have that interaction,” said Kathy Dorsey, Joey’s mother. “Joey needs a lot of that motivation. He needs prompting on things to do. He’s not the type of kid who’s just going to pick up a puzzle and work on it. He’s the type of kid who relies on that one-on-one contact.”
A year has passed since the COVID-19 pandemic swept the nation, forcing families such as the Dorseys to adjust to a new normal. Kathy Dorsey, like so many, began working from home while her son shifted into remote learning. In some ways, the transition felt abrupt, she said.
Over the course of those first few months, Kathy Dorsey slipped into a full-time role at work on top of being a pseudo-teacher for her son. Though she enjoyed the flexibility that came with working from home, she soon realized Joey needed more than she could give. And the balancing act soon left both mother and son feeling defeated.
Kathy Dorsey said she felt like she couldn’t give her son the attention he wants and needs, and with each day spent at home – away from his friends, family, teachers and other familiar places – she saw his behavior unravel without the in-person support he received at school.
“When somebody is not here with him, he’s just stimming on his toys and listening to his music,” she said. “It’s just not productive. He gets bored – bored out of his mind – and then that’s when the frustrating behavior comes in.”
Kathy Dorsey recalled the moments when her son would become aggressive. When Joey Dorsey became upset, he’d stomp, yell or pinch to communicate.
“It’s hard to see,” said Kathy Dorsey, her voice softening. She paused again, before adding, “It’s very emotional. You want to help your kid, and your hands are tied.”
Even when Transition 99, the Community High School District 99 special education program for young adults, offered a hybrid model, Kathy Dorsey and her husband, Steven, felt that wasn’t enough for their son. Joey Dorsey needed full-time, in-person learning, which is why the Dorseys leaned on Mata for help.
“He needs that motivation from somebody pushing him along,” Kathy Dorsey said.
Before the pandemic, the Dorseys said their son would be at Transition 99 for a full day, from about 8 a.m. to 2 p.m., five days a week. Now, he’s only there for half a day four times a week.
Before the pandemic, the Dorseys often spent their weekends cheering on the District 99 basketball and football teams.
“He went from being such a social kid,” said Kathy Dorsey, her voice wavering. “You know, they say absence makes the heart grow fonder. There’s no absence. It’s the three of us constantly.”
With Mata now in the picture, Kathy and Steven Dorsey hope to give their son an opportunity to continue living his life. On Tuesdays and Wednesdays after school, Mata comes over to the Dorsey home, where he puts his lesson plan into play. Mata, a former special education teacher, devotes his afternoons to Joey Dorsey. They eat, read, go on Target runs or shoot hoops.
“It was hard to hire someone – to bring someone into the house – because of COVID. We’re exposing somebody, and somebody is exposing us,” Kathy Dorsey said. “It [the process] took longer. I wish we could have done it sooner.”
‘We’re all in this together’
At the mall, Mata and Joey Dorsey headed inside the Yorktown Newsstand to select a snack. Briefly wandering the aisles, Mata spotted Joey Dorsey’s favorite treat, a Rice Krispies treat. Its blue and silver wrapping glimmered underneath the fluorescent lights.
Holding up the treat, Mata asked Joey Dorsey if they should buy it. Looking at his keyboard, Joey pressed “yes.”
On the way to the food court, Joey continued to press a few keys on his talkbox, which dangled from a black strap around his neck. There are times when he would use the device to respond to Mata’s questions, and then there were times when he would hit random buttons such as an animal sound, ask, “Do you like bubbles?” or say, “I love you,” to which Mata always replied, “It’s good to love.”
These are the ways Joey tries to engage with the people around him. The cues can be quiet and simple or loud and complicated, Kathy Dorsey said.
She said her son has been using a communication device since he was in grade school, and “he could take it or leave it. When he wants to use it, he will use it.” She said that when her son hits keys over and over, that’s his way of trying to interact, wanting to be a part of the conversation or using noise to calm himself down.
“The louder it [the noise], the happier he is,” said Kathy Dorsey, to which Mata laughed and interposed, “That’s called being a teenager.”
Mata said working with children with special needs during the pandemic has brought on new challenges.
Because Joey doesn’t use words to convey his thoughts, Mata said he would normally look at Joey’s facial expressions or body language to see whether he is uncomfortable, happy, scared or sad. With both of them masked in public, it has been “borderline impossible” for them to understand each other, Mata said.
“I’m really left to the most primal of responses with him, which would be like slapping, gesturing,” he said. “Even with the eye movements, you know, it’s like with us not knowing each other that well yet, I’m like, ‘Was that an upset face? Is that an excited face?’ ”
Like many people living in the pandemic, Mata and Kathy Dorsey had to figure out the best and safest way to create a positive environment for Joey, and they learned by taking it one day at a time.
“You prepare yourself for the unexpected,” Kathy Dorsey said.
Dena Zingarelli and her partner, Lisa Wojtasiak, parents of a Transitions 99 student, said they, too, noticed their son’s behavior change during the pandemic. They knew their son, Carlos Wojtasiak, to be an independent learner with a penchant for trains. In his free time, Carlos often loved photographing the Metra or Amtrak trains, as well as ride the trains into the city to see his friends.
The isolation because of the COVID-19 pandemic impacted Carlos’ mental health. Zingarelli and Lisa Wojtasiak said their son’s breaking point was when Transition 99 pressed pause on its in-person learning. The 20-year-old became withdrawn, kept to himself and mostly played video games alone, something he never used to do, his parents said.
“I felt bad for him,” said Lisa Wojtasiak, who added her son just started coming into his own and the pandemic pushed his progress back. “It was just difficult.”
The T99 transition from remote learning to the hybrid model gave Carlos the sense of normalcy he craved. His parents shared they saw their son embrace the changes around him. Carlos was diligent about wearing his mask and routinely wiped his face shield, Zingarelli said.
“He really has done a great job,” Zingarelli said, noting how proud she is to watch her son grow.
On New Year’s Day, Carlos welcomed 2021 with a candid Facebook post, a surprise that left Zingarelli and Lisa Wojtasiak with some insight into their son’s world. Carlos briefly opened up about tending to his needs. He exercised more – and even lost weight – and spent time outdoors, taking pictures of trains with his new camera.
“I’m super proud of what I did over 2020 even though it didn’t go the way I wanted to but at least I did it differently and that’s all that matters,” he wrote.
That positive attitude, Zingarelli and Lisa Wojtasiak said, left them speechless.
“Even with his challenges with his special needs, he’s overcome all of them, and he has the ability to always find good and look at the positive in all situations,” Wojtasiak said.
At the Dorsey household, there’s a framed sign that hangs above the kitchen sink. In cursive, the phrase, “we’re all in this together,” stands out on the white backdrop. And a thin heart outline wraps around the words.
Kathy Dorsey said she and her husband bought the print from HomeGoods a few weeks back. Like Carlos Wojtasiak, the Dorseys have turned to hope, love and one another to survive the waves of the COVID-19 pandemic.
“Every now and again, one of us will point to it and say, ‘we’re in this together,’ you know?” Kathy Dorsey said. “It’s like our little reminder that we’re walking through this together, not alone.”