Holden Frye rushed home after a day of school in December 2019 with two major announcements: He knew exactly the charity his family should choose for their annual Christmastime donation, and he was going to write a book.
Both thoughts stemmed from an assembly given at his school, Mt. Lebanon’s Hoover Elementary, earlier in the day.
The students got a visit from Kimberly Resh, founder and director of programs for the statewide organization Mikayla’s Voice, and her message of inclusivity, especially as it relates to children.
She read a book to introduce them to the nonprofit’s namesake, a young woman with a severe brain injury. And she spoke about the organization’s logo, a ladybug with one yellow spot, a symbol of the differences we all have to vary degrees.
Holden is the child of two conscientious parents, one of whom is a licensed professional counselor, so that certainly wasn’t his first talk about why the differences among people should be honored. But that particular day, the message affected him differently because he’d just discovered his own yellow spot.
“The assembly was relatable because I have Tourette’s and it impacts me, and that was when I was just diagnosed,” he said. “It helped because I’m different, too.”
Lived experience
Ms. Resh is also Mikayla’s mother.
When her daughter was born, she experienced a traumatic brain injury so severe, doctors weren’t sure she would live. And when she did, they expected she’d only live to age 12.
Although Mikayla couldn’t communicate verbally, and used a wheelchair and required a feeding tube, her parents made every effort to integrate her with her peers. The family welcomed their questions, which made classmates comfortable with the tools necessary for Mikayla to thrive.
In her daughter’s teenage years, Ms. Resh founded Mikayla’s Voice, an organization that invites all children to be voices of inclusion on behalf of Mikayla, who was unable to do so for herself.
Beating the odds
As Ms. Resh introduced her organization and the importance of inclusion to student bodies across the state, she was used to questions about her daughter: Where is she? How old is she? What does she like to do?
Those answers had to change in 2019 when Mikayla died at age 24.
Although her death was tragic, she had lived twice as long as doctors predicted. Her mother has a strong feeling about why she beat those odds, which is how she now answers questions such as, “Where’s Mikayla?”
“I tell the kids, and I mean this, that I believe Mikayla lived twice as long due to the love, kindness and friendship she was shown throughout her life,” Ms. Resh said. “As I tell the kids, I’m not talking about her mom, dad and her sister. I’m talking about, when I brought her to her first-grade class, she was the first kid in that school ever in a wheelchair. Those kids were anxious, but they asked questions and learned about her and became her friends.”
Until Holden
The book Ms. Resh reads during her presentations is called “Our Friend Mikayla,” and it was written by her daughter’s third-grade class.
Mikayla’s Voice published that book and two others since — one about having a friend with Down syndrome and the other about a friend on the autism spectrum, details she discusses before the end of her presentation. Then, she asks if anyone might like to write a book about the organization’s logo, the ladybug with one yellow spot.
Usually, that call goes unheeded, but that was before Holden Frye was in the audience.
When the talk concluded, he approached her and said he’d like to write a book. She was hopeful but also aware that 9-year-olds get excited about a lot of things without following through.
She came back to the school in February 2020 as a part of her Wheels of Friendship art experience, where kids are invited to create a collaborative art project focused on inclusivity. While he worked on his canvas depicting a wheelchair, he let her know that he was still working on the book.
Then, in June 2020, during the pandemic shutdown, Ms. Resh heard from Holden’s guidance counselor: He was done with the book and wished to have a video conference so he could read it to her.
Home run
Ms. Resh isn’t known for her poker face. Knowing that left her feeling nervous before her video call with Holden because if the book wasn’t great, she knew her face would show it.
Luckily, that wasn’t a concern.
“I get on this call, he reads the book, and it was a home run,” she said.
“The SpOt,” tells the story of Dot, the ladybug with differences including one yellow spot and curled antennae. Dot and her family live in a pumpkin in a pumpkin patch. But when kids visit the patch on a field trip, their pumpkin is picked, meaning Dot’s family is moving.
The adventure is extra hard on Dot because of her differences. After running to cry in a forest of four-leaf clover “trees” — because they’re big from Dot’s perspective — her luck starts to change.
A class of crickets join her class after a dog steps on their school, and they become the target of bullying because they look different from the ladybugs, an intentional nod toward racism, Holden says.
But when the class begins to discuss how much we all have in common despite our differences, even the biggest bullies change their ways.
For nearly the next year, Holden and Ms. Resh had a conference call every Wednesday at 4 p.m. They decided how to chunk out the story onto pages and brainstormed about illustrations, something she has a knack for as a former graphic designer.
In a full-circle moment, Holden returned to an artistic technique Ms. Resh taught him during Wheels of Friendship to illustrate the book. He tore and twisted pieces of tissue paper, arranged it into images and then painted it with craft glue to hold it in place, creating an appropriately playful feel.
“If you ask me what I think his accomplishment is, he’s written and illustrated an award-winning children’s book,” she said. “His story and illustrations are as good as any other. I couldn’t have written it better. I don’t know many adults who could.”
Look for the helpers
Ms. Resh was ready to write grant proposals to cover the $20,000 printing cost of 3,000 copies of “The SpOt” when her 78-year-old father stepped in: “I’d like to see where my money does good. I’m going to be giving it to you later anyhow.”
That lot of books are the ones for sale at mikaylasvoice.org. At the insistence of the Fryes, all proceeds go toward Mikayla’s Voice.
Then, Holden’s father’s law firm, Steidl & Steinburg, also wished to help.
With the firm’s donation, another 1,000 books were printed and will be distributed to kindergarten and first grade classes in 54 school districts and a dozen charter schools in Allegheny County.
Because Ms. Resh, 54, lives on the east side of the state in Nazareth, her organization collaborated with Achieva, a local group dedicated to assisting those with disabilities, to distribute the books. Within hours of Achieva asking its employees to volunteer for that distribution, more than half the slots were spoken for.
“The eagerness of Achieva’s employees to volunteer with the book distribution says a lot about their kind hearts and their desire to spread Holden’s message,” said Lisa Razza, Achieva’s director of communications. “As a staff at a disability service organization, they share the vision of a more inclusive world.”
The real prize
At home, Holden, now 12, is known for loving Legos and soccer and spending time with friends, when his chatty nature is an asset. But no matter where he is, the Fryes really only have one rule: “That I’m kind,” Holden said when his mom, Olivia, asked what it is.
And the rule seems to be paying off.
“That was the best thing for my husband and I was just seeing his heart — this is who he is — and just seeing that come out in such a really cool way,” she said.
On March 18, his caring nature was put on a bigger stage, when he addressed the student body of his former elementary school, much like Ms. Resh did a few years ago. And with 23 other students, he participated in the Wheels of Friendship art project unveiling, which includes a heart that says “choose kind” and an upside-down heart that reads “and be unique.”
“We wanted our current students to see that each one of them can make a huge difference in this world,” said Hoover Elementary Principal Nicci Giehll. “Two years ago, Holden was a student at Hoover who attended an assembly just like them. He set his mind to writing this book and sharing it with others.”
He read his book and talked about creating it and the importance of the message. Then, he got a surprise: Carole Clancy, director of the state’s Bureau of Special Education, presented him with an award for “outstanding excellence in writing” on behalf of the Pennsylvania Department of Education.
The award made Holden feel “more accomplished,” but he and the adults around him know that the real prize is the effect “The SpOt” will have on other kids, whether they’re in wheelchairs like Mikayla, have tics like Holden, or simply wish to join in the chorus created by Mikayla’s Voice.
“Mikayla’s voice really does want to grow as an organization, and I could definitely see this going further thanks to Holden and Holden’s voice for Mikayla,” Ms. Resh said. “And I think the way we’re doing it is more important, giving the power to the kids because, not to take anything away from my generation, but if we were going to get it right, we would have already gotten it right.
“I’ve always said this, but especially post-COVID, we all have a yellow spot.”
Abby Mackey: amackey@post-gazette.com, Twitter @AnthroAbbyRN and IG @abbymackeywrites.
First Published March 31, 2022, 6:00am