NOBLESVILLE, Ind. — In the organized chaos that marked the end of the school day in Kayla Schnaus’ third-grade class, Matthias Vescelus walked confidently to his cubby.
He’s blind, but instinctually avoided the open cabinet doors, a coat strewn on the floor and his 22 rambunctious classmates to grab a few papers from a bookshelf before getting his own backpack.
It’s hard to watch without intervening, but the adults in the Promise Road Elementary classroom are used to actively suppressing the natural instinct to close doors in his path or grab his arm to act as a guide.
Schnaus watched over all of the students, reminding a few that they need to stack their chairs before lining up for the bus. She hung back as Matthias asked a classmate to help him carry his coat, papers and backpack to the table so he could pack up. She only intervened to tell him he could take home his BrailleNote Touch, the adaptive iPad he uses to read and write.
Within minutes of watching their quiet interaction, it becomes clear that their relationship is special. Matthias’ mom, Katie Vescelus, says that’s because their relationship is really pretty typical.
“She treats him like a 9-year-old boy,” Vescelus said.
What does Matthias think of his relationship with his teacher?
“She’s pretty strict,” he said. That makes Vescelus smile.
Their family made some big decisions this year, pulling back supports to give Matthias the room to succeed or struggle on his own, and this is exactly what Vescelus hoped to hear. One of her greatest challenges is giving Matthias a normal life.
Matthias was diagnosed with retinoblastoma — an eye cancer most common among young children — when he was 3 1/2 months old. He had tumors in both eyes, which Vescelus said is rare and caused by a non-hereditary genetic mutation. While treatments saved his life, they resulted in blindness.
He’s grown into a smart, witty, articulate and fun-loving kid. Vescelus said Matthias didn’t start talking until he was 2 1/2 years old, at which point he launched into full sentences with correctly conjugated verbs. He hikes, swims and plays piano. He loved wrestling with his older brother, Magnus, so they started jiu-jitsu this year. He’s known for deep thinking but also cracking a joke or two in class, even if it’s at his own expense.
He walks with confidence, which Schnaus describes as a little “pep in his step.” In fact, people have asked Vescelus: “Are you sure he’s totally blind?”
Vescelus always chuckles and says she is sure because his eyes are prosthetic.
Some of this is possible because his parents have orchestrated it — signing Matthias up for activities, putting him in mainstream classrooms starting in kindergarten and taking him to a mobility tutor to learn how to use a white cane.
But the confidence and independence are possible because of the moments that weren’t carefully constructed. Like when Matthias was at the playground and Vescelus would sit back on a bench with a white-knuckled grip. Or when Schnaus held her breath as he was walked down the hallway of Promise Road toward a big crowd of kids. The moments when he’s allowed to figure it out for himself.
“I’m sure it makes me look merciless,” Vescelus said. “But at the same time, I do cringe. I’m his mom. It’s really hard not to protect him.”
The latest moment was when the family decided against continuing with a one-on-one aide, leaving Matthias and Schnaus to figure out his learning together.
Without the district-provided BrailleNote Touch, Schnaus and Matthias might as well be speaking two different languages. Matthias reads and writes in braille. Schnaus, as a general classroom teacher who had never worked with a fully blind student, does not.
The adapted iPad includes a black cover with buttons to type in braille toward the top and a line of braille underneath. Matthias runs two fingers on his left hand over it to read. Schnaus is able to lift the cover to see a regular iPad screen, which automatically translates the braille.
During class, she walks over and checks his work, the same way she checks all students’ iPad over their shoulders.
With most lessons, Schnaus said she can paste the same materials she uses for the other students into Matthias’ Google Drive, which he can access on his BrailleNote Touch and read in braille. He’s in the school’s high-ability class, working at a fourth-grade level.
At first, without the help of an aide, Matthias’ grades dropped slightly. He’d always received straight A’s. Vescelus said he’s working to pull them back up, and takes pride in doing it himself.
“I feel like I’m being more independent, and I’m happy about that,” Matthias said.
Months later, Matthias and Schnaus work together like a well-oiled machine. But in the beginning, Schnaus was overwhelmed. She previously taught special education for four years in Hamilton Southeastern Schools, but the learning curve was still steep.
“I would say at the beginning there were a lot of tears,” said Schnaus. “I think I had to be OK with failing every now and then and figuring out what we were going to do next.”
At first, she was trying to plan every moment of the day, to make sure there was a braille or audio version of everything. But unplanned moments happen. Sometimes she spontaneously writes or draws on the board. Math is especially tricky, so the district’s blind and low-vision specialist, Shelby Metzler, sits with Matthias. It’s difficult for him to show his work on a problem in the same way as other students.
Some pressure lifted when Schnaus realized that there will always be moments that Matthias will experience differently than those who can see.
“His world is a little bit different, and that’s OK,” she said.
Matthias is just starting to realize his world is a little different. So is his older brother. To them, Matthias’ annual trips to the hospital to check for cancer are normal.
“To them, cancer is very normal, which is bizarre,” Vescelus said.
Matthias said his classmates don’t really ask him about being blind. Many of them have known him since kindergarten.
“It’s basically like closing your eyes, you can’t see,” he said. “I basically do the same thing except I have a couple differences. I have to use a cane to get around, and I can read braille while others can’t.”
He’s rarely scared but said being blind could be scary.
“Say there’s a fire and I can’t find my way out, that would be scary,” he said.
At the same time Vescelus tries to give Matthias normality, she recognizes that he’s special. He has an intangible quality that draws people in. Matthias and Magnus are speakers for the Joseph Maley Foundation and is involved in pediatric cancer advocacy for Saint Baldrick’s Foundation.
And he’s certainly had an effect on his classmates. Four of his friends dubbed themselves the “Matthias crew.”
“You have a crew?” Vescelus asked.
“Yeah I do,” Matthias said. “Eden invented it. She’s technically the leader, but I am the one that she helps.”
His classmate Eden Siebe guides Matthias to the bus after school. They walk out first, arm in arm. She also helps him at lunch, describing which fruits are available for him to choose from. They’ve known each other for four years, he said, and have been best friends the entire time.
“They’ve learned that somebody who maybe is a little bit different than them has a lot to offer the world,” Schnaus said. “They’ve learned the importance of being kind.”
Another unintended benefit of stepping back and letting Matthias be Matthias.
Source: The Indianapolis Star, http://indy.st/2qhT6wn
Information from: The Indianapolis Star, http://www.indystar.com
This is an AP-Indiana Exchange story offered by The Indianapolis Star.