Hundreds of kids were on their feet, their claps and screams multiplying in the reverb chamber that is their tiled school cafeteria. It was assembly day at Light Farms Elementary in Celina, and the tables were folded and pushed against the walls to make room for rows of elementary students buzzing with Friday energy.
This was their favorite part of every assembly: the teacher challenge. Teachers from each grade participate in some kind of silly competition—like transporting M&M’s using a straw and no hands—while students cheer them on.
“It was pret-ty loud,” says Luke Zihlman, who was in second grade at the time. (He’s now in fourth.) He too was caught up in the fervor, but his view was obscured by the kids in front of him. “After I realized I was too short to see, I looked over at the other students to see if I could get a better view, and I saw Samu.”
Samu Miller—a classmate and soccer teammate—was sitting six or seven kids away from Luke that afternoon. When Luke glanced in his direction, Samu was “huddled up, covering his ears,” Luke says. “I suddenly remember—Samu has epilepsy. Loud sounds can make him have a seizure.”
Samu wasn’t having an actual seizure, but he was alarmingly close. He doesn’t recall much from those moments at the assembly—just the screaming. “It felt like my eardrums were bursting with blood,” Samu says. “I was very weak, and I couldn’t talk.”
As Samu fiercely pressed his hands to his ears, Luke pushed past other kids to reach his friend’s side. Samu didn’t respond; he didn’t even know someone was there. After trying unsuccessfully to help him to his feet, Luke went to their teacher for help. She took Samu to the nurse, and Luke was left to wonder—and worry—about his friend as the teacher challenge and the cheering carried on around him.
“I was scared for Samu,” Luke says. “I remember a bunch of people asking me, ‘Why are you crying? Why are you crying?’ I’m like, ‘’Cause my friend is hurt!’”
Most of the other students didn’t notice Samu’s near-seizure and exit. “They were more focused on who would win the teacher challenge than others around them,” Luke says.
His tone doesn’t suggest an indictment, just an observation. But Samu’s friends are different. As his self-appointed protectors, they view the school day (and every day) with a keener eye. Their awareness is sharpened, and they recognize the hidden dangers in seemingly innocuous events—assemblies, morning announcements, picture day. After Samu was first diagnosed, one of his friends accompanied him on every trip to the bathroom or nurse’s office. During fire drills, his friends watch for warning signs of a seizure as they all file outside. They answer questions about epilepsy from curious students. And of course, they know what to do if Samu has a seizure.
That’s a big responsibility for elementary kids, but it’s one they’re proud of, insists Brayden Vorel, Samu’s neighbor and best friend.
“It made me feel good that I have someone to hang out with, play with, but also be very protective,” Brayden says. “I feel like I’ve grown to it, like it feels normal to do this for him.”
The Buddy System
Let’s be clear: Prosper Independent School District isn’t entrusting a student’s life solely to other 9- and 10-year-olds. Principal Haley Stelly assures me that the adults on campus are looking out for Samu too, and he has other official epilepsy accommodations, like being allowed to read in the office during school assemblies. (That assembly was the last one he attended.) She explains that students with disabilities like epilepsy are evaluated case by case in partnership with families and caregivers; if Samu needed a service dog or an adult by his side all day, that would be arranged.
Still, teachers and the school nurse may be Samu’s safety net, but his friends see themselves as his first line of defense.
Kata Miller-Massányi, Samu’s mom, reveals that having a buddy with him is actually part of her son’s 504 plan, the document that outlines his epilepsy accommodations. Being a buddy was a critical role in the early days especially. Samu was afraid of passing out alone—on the bathroom floor, no less.
For Samu and his friends, joint bathroom trips aren’t embarrassing; they’re matter of fact, just like his epilepsy. “If he has a seizure, and then there’s no one in the bathroom, he would be helpless,” Brayden explains.
He doesn’t treat Samu as a victim, and Samu certainly appreciates the backup. Two summers ago, when the third grade class lists came out and Miller-Massányi realized Samu didn’t have a close friend in his room, she rang up Principal Stelly. Besides wanting a buddy to have an extra eye on him, Samu was taking an anti-seizure medication that made him extremely depressed.
“‘We need Brayden,’” Miller-Massányi recalls saying. “‘You don’t understand how much we need him.’”
Stelly moved Samu to Brayden’s class and made sure the two stayed together in fourth grade too. Even though Samu’s last seizure was in November 2018 and his “buddy system” has become more lax—meaning he can fly solo to the nurse’s office and the bathroom—he told his mom he still wanted Brayden there for support; in fact, the break from seizures has Samu increasingly anxious that the next one must be right around the corner.
But he’s already got a long-term plan.
“We’re gonna be in the same class in college, and we’re gonna work at the same place,” Samu says.
“Seeing how they are together and looking out for one another, it’s very inspiring, not just for us as adults but I think for other kids too, because they’re setting an example of acceptance.”
Friends on Alert
Samu and Brayden call themselves “step twin brothers” for a reason. There’s a physical resemblance: Both have blond hair and a smattering of freckles. They also bicker like siblings. Interviewing them together is a case study in one step forward, two steps back—each step punctuated with laughter and shoving.
Brayden calmly tries to explain their friendship: “Sometimes we get into arguments or disagree—”
“We always do, Mister!” Samu interrupts, giggling.
Brayden gives me a look like he’s been in the trenches with a rebellious teenager. He sighs with mock exasperation, “What am I gonna do with you?”
The boys were friends before Samu’s epilepsy diagnosis, but Brayden believes that being in the same class for two years has cemented their bond.
“I think Samu has became [sic] a closer friend than before to me, and a friend that I should be more aware of or protective on,” he says. “Ever since I met him when I moved here, it’s been like we’re friends, we know each other, but now it’s like we’re very close friends.”
School feels different now too, Brayden says. He pays attention to things that he used to disregard as routine, or fail to notice at all. Whether identifying parts of speech in the classroom or playing football at recess, he is on alert for Samu’s potential triggers: loud sounds and flashing lights.
Brayden also picks up clues to Samu’s well-being in his behavior—walking instead of running during P.E., for instance, could signal he’s not feeling well.
Besides morning announcements (the teacher turns down the volume for Samu), fire drills are the primary hazard—unlike assemblies, the noise is heard throughout the building, and there is value to Samu’s participation. As the alarm blares, Brayden looks to his friend to be sure Samu is covering his ears; if Brayden is close enough, he’ll cover Samu’s ears himself.
“Brayden takes this pretty seriously,” says Robyn Vorel, Brayden’s mom. “He feels like, ‘OK, they want me to make sure he’s OK at school, so it is my job to make sure that he’s OK at school.’ And I was like, ‘Does that make you feel too responsible?’ He goes, ‘No, I kind of like it. I mean, I’m Samu’s buddy. We’re like brothers.’ I think he’s actually taking this and actually owning it. He’s really wanting to be that person.”
Brayden and Samu’s fourth grade teacher, Morgan Lorenzini, says that when she was still getting to know the boys at the beginning of the school year, Brayden would remind her that Samu needed to go to the office during assemblies, and would volunteer to go get him afterward. “He’s always just looking out for him,” she says.
That desire to look out for each other can be seen among students in other schools as well. Elementary-age kids “naturally want to help,” says Patty Bustamante, executive director of specialized learning services at Arlington ISD. She works with students in her district who have epilepsy, type 1 diabetes and other needs, and says their friends and classmates consider it a privilege to be a buddy. At that age, she adds, they view the world (and therefore their responsibilities) in black and white. “Everything is so absolute—it’s all or nothing,” she says. “They take it very seriously.”
Indeed, Brayden is even critical of his job performance. “Sometimes I can be attracted to something and then completely forget about the people around me,” he says, citing the teacher challenge as an example. Then when the sound or the lights intensify, he says, the risk suddenly flashes into his mind again.
He and Luke both admit to worrying that something might happen if they let their guard down, or if they’re away from Samu. Even though Luke hasn’t been in the same class as Samu since second grade, he still thinks about his friend during fire drills. “I will normally look around for Samu, just to see if he’s OK,” he reveals when I talk to all three boys together.
Samu turns to him in surprise. “Wait, literally? Even if we’re in separate classes?” Luke nods, but Samu’s still skeptical. “You literally do?”
“Yeah,” Luke confirms, “I look around the hallway, ’cause there’s like crowds of people, so I literally look around the hallway just to see if you’re OK.”
“Who would’ve thought that by 8 you’ll know what to do when you see someone having a seizure?”
When I ask the boys about their favorite parts of the school day, Luke says math because he likes “the way it works.” Brayden lists recess and lunch (shocker) but also grammar and cultural studies. This year, Texas history is on the docket. “You get to learn stuff that you never would learn if you weren’t there at that time,” he explains.
Because he and Luke are here, now, watching out for their friend, they’re getting an education that’s beyond the scope of any STAAR test.
“Who would’ve thought that by 8 you’ll know what to do when you see someone having a seizure?” Miller-Massányi says.
She’s done her part to educate her son’s friends and classmates—as a professional dog trainer, she taught one of the family pups to nudge Samu’s head to the side if he’s on the ground and shaking (a measure that ensures he can breathe). She brought Dio to Samu’s second grade class to demonstrate how his peers should respond if they see Samu having a seizure.
Kids latch on to such real-life skills, Bustamante says. Unlike some school subjects that seem less than useful right now, learning how to care for a friend is personal and immediately relevant. It’s knowledge they can put into practice right away and see their world change as a result.
“They’re understanding how their decisions, their behaviors impact the world around them and change the world for the better,” Bustamante says.
Luke and Brayden agree that they’ve become more aware not just of Samu but of people in general, some of whom might have invisible challenges.
“I know that some people have disorders, and they need help with their disorders,” Luke says. “And I know that I don’t have a disorder, so I can be one of those people who help them. So I will tend to look around when I hear a loud sound or I see a blinking light.”
“I think it’s the awareness to think of any kid at this point,” Brayden’s mom says. “If someone looks like they’re in stress—head down, covered ears, whatever it may be—then they may know, ‘Oh, OK, so you’re reacting in some way because something’s bothering you. Let me go help or get help.’”
Tyson Zihlman, Luke’s dad, sums it up: “They’re learning to do the right thing.”
While Principal Stelly obviously wouldn’t wish epilepsy on her students, she says Samu’s condition paved a fast track for him and his friends to broaden their awareness and acceptance of others.
“Especially at a young age, kids are very ego-centric,” she explains, “so it [normally] takes awhile for them to increase their own self-awareness of what’s going on with them, and then in turn learning how they can relate and connect to others.”
“It’s the same reason that parents in our community bring their children up to the hospital to donate toys for other kids here, to help them realize, ‘OK it’s not all about you; there are other people to think about too,’” says Michelle McLemore, a certified child life specialist at Children’s Medical Center Plano. Child life specialists often visit schools of kids with chronic conditions and illnesses to help classmates understand the diagnosis and how to be a good friend to a child like Samu, whose epilepsy was diagnosed at Children’s Health.
In McLemore’s experience, as kids learn about their peers with differences, their ego-centricity is tempered by empathy. As much as kids have the capacity for bullying and meanness, they also have an immense capacity for acceptance, especially when equipped with knowledge. Samu has candidly shared his epilepsy diagnosis with his friends, and they in turn have accepted it as just another part of their school day, their reality.
“Looking at the situation and seeing how they are together and looking out for one another, it’s very inspiring,” Stelly says, “not just for us as adults but I think for other kids too, because they’re setting an example of acceptance and creating a sense of belonging for every child.”
Sharing the Load
Of course Samu knows his own seizure triggers. He recognizes when sounds are too loud or he’s too hot or cold. Miller-Massányi accepts the necessity of Samu’s self-policing; it is a responsibility that came part and parcel with his diagnosis. But life lessons notwithstanding, she sometimes regrets that his friends have assumed the same responsibility. When I interview the boys at her home, it is the first time she’s heard Luke talk about the assembly. She works hard to restrain her emotions as he speaks about his concern for Samu.
“Sometimes I feel guilty for that,” she later admits, “that he’s in that position where—Brayden too—like, ‘I think about him, I’m worried about him.’
“The teachers tell me the same thing, like, ‘Oh, we’re going to watch out for him,’” she continues. “Yeah, I’m expecting you to do that, but not a 7- and 8-year-old. They’re just … they’re so young.”
It’s both poignant and heartening to realize the weight that young kids can—and sometimes are forced to—carry.
McLemore believes it’s important for other children to understand their role in a situation like this. “If they feel like it’s their job, we need to remind them that there are adults—parents, medical staff and teachers—who are taking care of the child’s medical needs, so they can focus on being a supportive friend,” she says.
Samu is fortunate to have multiple supportive friends. So when Luke found out he wouldn’t be in Samu’s third grade class, he was only uneasy at first.
“I was a little scared,” he says, “but then when I saw him with Brayden. I was like, ‘OK, Brayden’s his friend. He knows he’s got epilepsy. I’m sure he should watch out for him … but I’ll still watch out for him.’”
Again, Samu seems surprised and grateful. He smiles at Luke. “You’re good,” he says quietly.
What Do Other School Districts Do?
Samu’s 504 plan specifies that he be allowed to have a buddy with him if needed, but it doesn’t name a particular student. “We don’t want any child to feel uncomfortable with a situation that they’re put in, which is why we don’t specifically say, ‘Oh, this is your role,’” Principal Haley Stelly explains.
We were curious: Is this a typical accommodation for students with epilepsy?
Fort Worth ISD spokesperson Clint Bond says this kind of buddy system is not a practice in his district. “Any student assistance provided would be provided by a District employee and would be influenced by many factors including doctor’s statement(s), student’s condition, etc.,” he wrote in an email.
In Arlington ISD, students may be assigned to help classmates with conditions like epilepsy depending on the need and the kids’ ages—typically fourth or fifth grade and older. Patty Bustamante, AISD’s executive director of specialized learning services, says they choose buddies carefully and often provide an orientation to the class, much like Samu’s mother did for his friends and second grade classmates.
Bustamante adds that teachers may institute a class-wide buddy system so that everyone has to go in pairs. (Samu’s second grade teacher, Melissa Patterson, did just that: She started a buddy system in her class thanks to Samu; two years later, her students still go everywhere in pairs.)
Image courtesy of iStock.