With Cherished Occasion Canceled, Mates Carry Parade To Teen With Down Syndrome

CHICAGO – Ben Carnes, 17, starts the countdown to the annual Festival of Lights parade in Crystal Lake on July 5th.

“Parades are sure to be his thing,” said Julie Carnes, Ben’s mother. “There are two big ones in our city: the fourth of July, and as soon as that happens, the conversation shifts to the Santa Claus parade. He talks about her all year round. “

Ben has Down syndrome and his love for parades inspired his parents to seek the Kingpins, a line of drum kits for students with special needs. At the parade on July 4, 2019, Ben was allowed to drive a parade wagon and perform with his drum colleagues.

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“There were definitely times when I couldn’t imagine him standing up to perform in front of people,” said Julie Carnes. “Now I even went so far as to call it ham sometimes. He enjoys these parades so much. “

The July 4th parade and the Festival of Lights parade, which usually takes place the day after Thanksgiving, have been canceled this year due to COVID-19. Ben took the July 4th news seriously. He refused to acknowledge the cancellation of the Festival of Lights (also known as the Santa Claus Parade).

“Maybe two weeks before it would have happened, we started planting the seed that was canceled,” said Julie Carnes. “It was honest, like he was just ignoring the fact. We thought, ‘Oh boy. It’s going to be difficult. ‘”

On the Tuesday before Thanksgiving, Julie Carnes texted her friends in a group chat and mentioned that Ben was having problems.

“Ben is pretty carefree and always in a good mood,” said Erin Snodgrass. “Julie wrote that he was sad and downcast and kept asking about the parade, even though they kept talking about the parade being canceled.”

Julie Carnes asked if her friends knew of other light shows in the area. Her friends had a different idea: what if they got in line one night and drove past Ben’s house to wave and honk? Maybe hold up a few posters?

“Kind of an imitation of what those birthday parades are,” said Kerri Bowers.

“I remember Julie saying, ‘Let’s wait and see how Ben is doing,'” said Laura Karamitos. “But of course we didn’t listen.”

Snodgrass, Bowers, Karamitos, and Tammy Freund all work with Julie Carnes at Crystal Lake South High School. (Freund and Bowers are school counselors; Karamitos, like Carnes, is a social worker; Snodgrass is a speech pathologist). The foursome jumped off the group text and went to work planning a parade.

Karamitos started the hunt for a Santa suit and a Santa Claus. Bowers emailed some friends and neighbors. Snodgrass sent an email to the school’s student services department.

“Ben is on our functional life skills program, so he’s pretty well known throughout the building,” said Snodgrass. “And obviously Julie works there, so it’s like family. When we need each other, we just step in. “

Peter Karamitos, Laura’s husband, got a Santa suit from a friend. Snodgrass’s friend, Jim Tomasello, got himself a flatbed trailer and a couple of inflatables.

“I asked him if we could put some explosions in the back of his truck and he said, ‘This is not a parade! You have floats in a parade! ‘”Said Snodgrass.

The initial plan of lining up four or five cars quickly blossomed when the news spread and everyone wanted to join. They asked attendees to meet outside Bowers ‘house at 5:30 p.m. Sunday and drive the mile or so to Carnes’ house.

“I ended up directing traffic on both sides of the street,” Bowers said. “We had more than one car per family – you would have each spouse in a car, teenagers in your own car. We had several people there who had just lost family members to COVID and showed up anyway. “

Bowers estimated that there were a total of 26 cars in a row, with Santa Claus leading the line from head to toe.

“I said, ‘You know you can probably only put on your Santa jacket,” Karamitos said to her husband. “He said,’ No, we’re all going out. ‘ I ended up painting his eyebrows white. “

Julie Carnes’ friends managed to keep the parade a secret from her, but they let her husband Jeff into the scheme so he could make sure everyone was home when the parade hit their streets. Sometime on Sunday night Jeff wrote to the friends to hurry up and come over before Julie went down to the basement to exercise.

“Kerri called me and said, ‘Hey, we need you to go outside,” said Julie Carnes. “And in my mind I just thought her family would come over and hand in something. I had no idea what for I went outside. “

She and her husband grabbed Ben and his younger brother Charlie and went forward.

“And there is this enormous parade,” she said. “So many people showed up – some of his teachers were there, my boss came, our former deputy director came, his physical education teacher, his speech therapist, his occupational therapist.”

Everyone drives past Ben’s house. In a festival of lights and inflatables and love.

“He’s a pretty happy and social guy in school,” said Julie Carnes. “Everyone knows him somehow because he always says hello to everyone when he does his job at school. He brings so much joy to people, and I think that’s why so many people have come. “

At each July 4th parade and Festival of Lights, someone in Ben’s family is assigned record-keeping records so Ben can re-watch the parade for the following weeks and months. Charlie recorded the parade for his brother on Sunday, and Ben has seen it every night since.

“Some cars have given gifts,” said Julie Carnes. “Santa gave him a snow globe with Charlie Brown. And he got balloons. He takes these balloons and this snow globe to his room every night to sleep.

“It still makes me cry,” she continued. “It was huge for him.”

And also for the participants.

“We all needed it,” said Snodgrass. “Just as Ben needed it, we all needed it.”

“It started as a small idea of ​​helping a friend for 15 minutes and putting a smile on Ben’s face,” Bowers said. “And it just exploded, but with joy. His face when he saw Santa Claus was such a joyful thing. “

“I came home and said, ‘I want to do this tomorrow,’ said Karamitos.” My husband said, ‘I had no idea how this would affect me.’ “

Ben had a lot to give up this year, said Julie Carnes. His school is open to face-to-face learning, but he has been studying remotely since the spring due to some health issues. Most of his favorite pastimes, in addition to the parades, have been postponed.

“There have been so many losses for him,” said Julie Carnes. “And he’s a kid who’s very routine. It just meant so much to us to have this to lift one’s spirits. “

Next year, she joked (hopefully), they need to gently spread the news that the citywide parade is starting again and the route won’t go right past their front yard.

In the meantime, Ben has memories (and video) of a few glorious minutes on a chilly Sunday evening when the best of humankind was on display.

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