So far during her first year in public school, Azayliah Perez has aced the social aspect of being a third grader.
The academic part is proving to be tougher than she expected.
But Zay’s five-year battle with leukemia has taught her nothing if not perseverance.
“One thing my friends love about me is I don’t get mad when I fail,” she says. “I just keep practicing and practicing.”
That pretty much sums up her daughter, Desiree Mendoza says.
“She tries and tries and does not give up until she gets it,” Desiree says. “Sometimes it takes her till the end of class, but she’ll still do her work from earlier just to have it done and turned in like everybody else.”
It’s a warm winter day, and Elizabeth Egan’s third-grade class at the east-side Kellond Elementary School is on a field trip to the Sweetwater Wetlands as part of its science studies.
After touring the grounds, the guide asks the kids to sit on the ground.
“I want you to open your passport and write about what you saw today under ‘The wetlands are,’” he directs the class. “Write anything you remember.”
Zay sits in the middle of a sea of children, all busily penciling in their observations. She looks up and fumbles with her pencil.
Her pal, Tavia Cailing, notices Zay is lost, grabs her friend’s paper and helps her figure out what to write.
After writing their observations, the children are each given a pipe cleaner and a number, which coincides with where they will start in the next activity. At each stop they get a colored bead to put on the pipe cleaner and then roll a big cardboard die to find out where to go next. Each spot is named after a water station, such as river, cloud or ocean.
“What does that say?” Zay asks after she rolls her die.
“Lake,” an adult in the group says.
Excited about school
When Zay’s leukemia was declared in remission for the second time, on April 10, 2013, she was excited to start school as a normal kid.
Her kindergarten, first- and second-grade education was through home school. But between hospital stays and doctor visits, learning was nearly impossible. And since she started third grade basically at a kindergarten level this year, retaining information and grasping basic third-grade principles have proven difficult for her.
“She’s still struggling,” Desiree says after attending parent-teacher conferences. “The subjects she did best in last semester, she did worst in this time.”
Zay has trouble with retention, a common side effect from the harsh chemo and radiation protocol she endured, Desiree says.
Three out of five childhood cancer survivors develop “late effects” in some form, says Clare Karten, senior director of patient engagement for the Leukemia & Lymphoma Society in New York.
That can include “problems with organization, reading or reading comprehension, visual memory for new things, understanding math concepts or remembering math facts,” Karten says. “Also, children with late effects of childhood cancer treatment may work more slowly than their peers, or have poor handwriting.”
More help sought
The school and her family are trying to get Zay more help to combat the side effects.
“We support students by first offering extra help within the class and then by offering progressively higher levels of support,” says Scott Hagerman, principal of Kellond Elementary.
Whatever Zay learned in home school is gone, Desiree says. “So she’s really at a kindergarten or first-grade level.”
Desiree feels Zay needs to be taught at that level. “If you want her to learn to read, you gotta teach her like a kindergartener, where they teach how to sound out the words,” Desiree says. “Just because she’s older doesn’t mean she doesn’t need to learn. In kindergarten they do it step by step. ... Well, she missed that step.”
Zay knows the letters in the alphabet, but she doesn’t remember the sounds, which is a skill learned in kindergarten.
“When I ask her what a letter sounds like, she just says ‘hmmm.’ She doesn’t know how to do the sounds,” Desiree says. “That’s why I strongly believe if they did the tutoring at the kindergarten level, she will put the puzzle pieces together and she’ll get it.”
Support is creative
Because of the unique situation, the school has been creative with support inside and outside of class, Hagerman says. As part of that, Zay gets reading help from Ms. Gilmartin, another teacher at her school, for 30 minutes most days.
Though Zay understands the need for extra help, she doesn’t always like it. “I feel left out,” she says. “Like my friends are all reading and I have to go somewhere else to read. It’s kind of embarrassing.”
One recent day, Zay sits at a table with two other students as they work on writing skills using a graphic organizer, which helps visually sort out a story. The kids are writing about how to catch a bandit.
“After we read the story, we pretended I’d be the sheriff and you three were the bandits,” Gilmartin says. “So, we’re writing down things I would do to catch you.”
The teacher reviews each of the students’ papers.
“Zay’s said search, hop on horse, lasso them,” Gilmartin says.
“Then put ’em in jail,” Zay adds with a smile.
Now the teacher wants the students to take the steps and put them into complete sentences in their journals. Zay gets to work, concentrating on writing while the other students chat about the story with the teacher.
“Your first idea was ‘search for them,’” Gilmartin says to Zay. “If you wrote first search for them, is that a complete sentence?”
“How would you say that to me if you were telling me a story?”
Zay gives the question a little thought. “First you have to search for them.”
Zay and her teacher work until she has two sentences written, complete with capital letters and finger spaces between words.
“Read back what you just wrote.”
“How to catch a bandit,” Zay begins. “First you h-a-a-a-” She stops, struggling to remember the word she wrote moments ago.
“You’re saying it,” the teacher encourages her. “You’ve got it.”
“Have to search for them,” Zay continues. “Next, hop on your horse and go find them.”
Little sister helps
Zay’s little sister, Khaylina, does well in school and tries to help her older sister.
But Khaylina is only 7 years old, three years younger than Zay.
Having a 7-year-old tutor makes Zay feel frustrated, not inspired to learn.
“It’s not fair that I don’t know that stuff,” she tells her mom. “It makes me feel like I’m the dumb sister and she’s the smart one.”
Desiree acknowledges her daughter’s frustration.
“It sucks, but it’s OK because you will get it,” her mom says. “Just like in the hospital, Khaylina could go home and you couldn’t. But you did. Eventually, you’re going to get it.”
As part of the Opening Minds Through Arts, or OMA, program, third-graders learn how to play the recorder and perform for parents toward the end of the school year.
Zay struggled with learning music at the beginning of the year but has started to make progress.
“Today, I high-fived her like a million times,” Desiree says. “Today in OMA, she got her orange string.” She compares it to moving up in karate with different color belts. Zay started as white, then went to yellow and now is orange.
“I love it,” Zay says. “I love the music and how I can get it.”
The students’ goal is to practice enough that they can play “Mary Had a Little Lamb” all the way through, without pausing or making a mistake.
Zay finally does it and is thrilled.
“That’s a big thing for her today,” her mom says.
Egan divides her class into reading buddy groups.
“Mia, you read aloud to Zay.”
“Yay!” Mia says. “Sit here.”
Zay sits next to Mia, who tells Zay how much she likes her hair up in a ponytail — something Zay couldn’t do with her post-chemo hair until recently. Zay smiles.
The girls open their books, and Mia reads while Zay tries to follow along, glancing at Mia’s book to make sure she is in the right place.
“Wait. Where are we?” she asks. She was following along on the opposite page. Zay is focusing but doesn’t know a lot of the words, which makes it difficult for her to follow.
“Mia, make sure and ask Zay what’s going on in the story,” Egan instructs.
Mia follows suit and asks Zay what’s going on.
“The horse runs off,” Zay answers quietly.
Mia continues to read. “We just passed an onomatopoeia,” she exclaims.
“Gluoosh...Glush...Gluoosh,” Mia reads it again.
“Oh yeah,” Zay says, a hint of accomplishment on her face as she remembers what onomatopoeia means.
“We’re on this paragraph now,” Mia says and continues reading.
Zay, trying to focus, watches to see when it’s time to turn the page. She rests her chin in both hands as Mia finishes the story.
Progress has been slow, but Zay is starting to show improvement in reading and writing.
Socially, she has grown tremendously. Her worries of fitting in and making friends from the beginning of the year have vanished, and she has made four close friends.
“I love my friends,” she says. “They try to help me a lot, and I’m like, ‘Let me try to do it on my own.’”
Through it all, Zay continues to be an inspiration to those around her. And despite the challenges of learning from scratch, she is optimistic about her progress.
“Reading and writing has been the hardest,” she says. “But I feel like I’m doing better.”
“She is a wonderful person who is full of hope,” says Egan. “She wants to inspire people.”
Zay is thankful for the help she has gotten at school. It is best expressed in a letter her mom helped her write for her teacher:
“Thank you for helping me with my reading and writing. You are the best teacher ever. I think you need to take a day off because you are the best teacher in the whole wide world.”