Photo by Ingrid Schnader.
Oz, Xander and Allie Harrison Imaghodor celebrate the new playground communication board at Homewood Central Park. The Imaghodors created a nonprofit organization in Xander’s name, called XVI, to provide advocacy and navigation to families who encounter childhooddevelopmental journeys similar to theirs.
A pregnancy is typically 40 weeks, but Homewood residents Allie Harrison and Oz Imaghodor had their son Xander at 23 weeks.
Getting through those next few months at the hospital was difficult, but new challenges awaited them after they brought Xander home. Xander was rejected from early intervention programs because he wasn’t “delayed enough,” Allie said. They saw Xander face biases because of his developmental delays. The Imaghodors had to spend countless hours researching Xander’s best options.
They created a nonprofit organization in Xander’s name, called XVI, to provide advocacy and navigation to families who encounter journeys similar to theirs. The organization can provide financial assistance for specialized therapies and evaluations, resource assistance, assistance with paperwork, help with transportation and more. It received its 501(c)(3) designation earlier in 2021.
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Photos by Ingrid Schnader.
Oz Imaghodor plays with his son, Xander, on the slide at Homewood Central Park. XVI, a nonprofit named after Xander, recently partnered with Jamie Pears, a speech pathologist teacher at Shades Cahaba Elementary School, to get playground communication boards installed at Homewood Central Park, Patriot Park and the park at Shades Cahaba.
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Photos by Ingrid Schnader.
Oz Imaghodor plays with his son, Xander, on the slide at Homewood Central Park. XVI, a nonprofit named after Xander, recently partnered with Jamie Pears, a speech pathologist teacher at Shades Cahaba Elementary School, to get playground communication boards installed at Homewood Central Park, Patriot Park and the park at Shades Cahaba.
Xander’s birth
Allie was 20 weeks pregnant with Xander when the Imaghodors discovered Xander would be born early.
Three weeks later, Allie’s water broke, but infants aren’t considered viable until 24 weeks. The doctor told the Imaghodors that if Xander didn’t show any signs of life, they wouldn’t do anything to intervene — it was too early.
“I was taken aback,” she said. “I was like, you’re joking, right?”
The Imaghodors assumed they would be dealing with medical issues for the rest of Xander’s life. To their surprise, Xander was born at 1 pound, 5 ounces without any physical disabilities. They spent the next 19 weeks in the neonatal intensive care unit, a time that the Imaghodors spent updating their friends on his progress using the hashtag #AdventuresofXVI.
He was too fragile for the Imaghodors to hold for his first eight days of life. Then, Allie asked the nurse what boxes needed to be checked so they could hold Xander and when that would happen. Allie said the nurse had an unexpected reply: “How about now?”
It was the best day ever, Allie said.
‘The tiny dictator’
Although he has no physical delays, Xander was about 3 years old when he was diagnosed with a global developmental delay. This means he has delays in all five areas of development: motor skills, speech, cognitive skills, and social and emotional development.
“Where Xander mainly struggles is with his fine motor skills,” Allie said. “It’s really hard for him to focus on holding a crayon to color or to write his name.”
He also struggles with speech. He falls somewhere between verbal and nonverbal, Allie said. “We typically refer to him as low verbal: he can say words, he can repeat words, and he can echo. He just has trouble with functional speech.”
Xander uses a communication device, called LAMP, to point to photos and verbalize what he wants.
Although he is limited verbally, Xander is sure of himself. Allie laughed and said Xander’s nickname was “the tiny dictator.” He knows what he wants, although sometimes he struggles communicating it. But if someone can’t understand him fast enough, he’ll take matters into his own hands. For example, if he wants a glass of lemonade, he goes to the fridge and brings the jug of lemonade to his mom and says, “More!”
Xander is spirited, but he also has a calm about him, Allie said. If he notices anybody who is not being played with, he will go give that person company and “parallel play.”
He is always laughing, she said. He loves music and loves to dance. He also loves to eat — he’ll eat anything, Allie said.
Sometimes when he gets really excited, he lets out a loud scream. He also does a tapping-toe dance when he’s excited, which the Imaghodors call the Xander dance. He has an expressive eyebrow and is full of personality, but he’s also a cuddle bug.
“I just think he is the coolest, most chill and laid-back kid,” Allie said.
Advocacy and navigation
After leaving the NICU as an infant, Xander had follow-up visits at the hospital. But each time, he was discharged after the first visit.
“What we found was people giving us the runaround,” Allie said. “We knew we qualified for early intervention because he was born before 26 weeks. But we got rejected by two agencies because they said he wasn’t delayed enough.”
But while Xander was in the NICU, Allie had kept herself busy with research, and she knew that Xander legally qualified for the programs.
“We finally found a place that would take him, and my husband and I thought, if this was hard for us as fully capable people, how hard is it going to be for families who don’t have the amount of time or the level of understanding that we do?” Allie said.
The Imaghodors also experienced challenges in Xander’s classes. Because Xander had trouble communicating, he began to show negative behaviors.
“We knew that it wasn’t him having tantrums or trying to be bad or trying to hurt people,” she said. “I think of how it is as an adult, how it frustrates me when I’m speaking plainly and someone can’t understand me. I can’t imagine not being able to speak and everyone not understanding you. That’s overwhelming.”
There was language in Xander’s individualized education program that the Imaghodors didn’t like, Allie said. His supervisors wrote that Xander was being aggressive. He’s not aggressive; he’s frustrated, Allie said.
“I take aggression as someone who is actively trying to hurt you for no reason or because they’re angry, and that’s not what Xander is trying to do.”
It was hard for them to get that language changed, she said. The IEP follows a student for the rest of his life, and she didn’t want Xander to be held back in the future because of language that identified him as aggressive.
Navigating these struggles and advocating for each child with special needs is part of the mission of XVI. Although the official nonprofit work with XVI began last year, Allie said they have been working on advocacy and navigation for hundreds of families since Xander’s birth.
By creating a nonprofit, XVI is now able to provide financial support and raise money for its programs.
Jeannine Jersey Bailey, one of the board members at XVI, became a supporter of the organization after getting to know Xander and becoming friends with the Imaghodors.
“There needs to be a voice for the people who don’t necessarily know how to use theirs, who don’t have the resources to be able to do that or who don’t know how to navigate the difficult waters ahead,” she said. “Having somebody who’s been down that road and someone to advocate and be an encourager, that is really where the magic happens with this group.”
The organization recently partnered with Jamie Pears, a speech pathologist teacher at Shades Cahaba Elementary School, to get playground communication boards installed at Homewood Central Park, Patriot Park and the park at Shades Cahaba. The boards are loaded with playground-specific vocabulary, such as run, swing and tag. Other words on the board are yes and no, emotions such as happy or frustrated, a variety of pronouns and more. These boards are helpful for children who are nonverbal, children who speak different languages or children who have difficulty communicating.
Bailey said her next project is finding other playgrounds that could benefit from having a playground communication board.
Although she has made many memories since working with XVI, she said she’s most enjoyed seeing people come together.
“The camaraderie that the parents feel when they find someone who gets what they’re going through and wants to help them — that’s a bond like no other,” she said. “Seeing them come together and encourage each other is magic.”
Visit xvibham.org for more information.