It’s not unusual for parents to advocate for their children, even if they’re not blind or low vision. But Wendy Hardman and her husband, John, like many parents, did something even more valuable for their son, Cole: They taught him to advocate for himself from the start.
Cole, who is now 34 years old, was born prematurely, making his family’s experience worth sharing during National Prematurity Awareness Month. Like many children born pre-term, Cole entered the world with complex medical needs. At birth, Cole’s diaphragm had a hole in it – a diaphragmatic hernia – and only one lung had developed, so his stomach had grown up into the area where his other lung should have been. Some of the medicine Cole needed damaged his hearing and he was also born with nystagmus, which means his eyes move back and forth, all due to his diaphragmatic hernia. The day he was born he had a six-hour surgery and was in the hospital for nine months.
“They told us he would not live past the age of two and he would slowly suffocate, but some miracle happened and his chest wall kind of tilted in the right way so his one lung could grow,” Wendy says. “That’s how Cole is: he survives and thrives. But it wasn’t until he was two or three years old that we began to realize how serious all his challenges were.”
Advocating from the beginning
Wendy had some experience with vision loss, because her sister has serious eye issues and is now blind. But her family has always been a glass-half-full kind of family. “My father always said that Cole was not handicapped but handi-capable,” she says. “Whatever our challenges were, we were going to solve them.”
Working as a family to advocate for Cole – setting an example for him in the process – started with Kindering in their hometown of Bellevue, Washington. This early intervention and education center taught Cole many valuable skills to manage his vision loss by the time he was three years old.
When he started kindergarten, Cole’s parents worked with the school’s special education teachers and helped develop an Individualized Education Plan (IEP) for him. By the time Cole was in middle school, he was running his own IEPs and Wendy would just watch.
“He’s got great advocacy skills and he was willing to have people take notes for him or help him be successful in other ways,” she says.
In fact, his advocacy skills were so strong that Cole became a spokesperson for United Way at an early age, giving presentations starting when he was just seven years old. He even presented at Microsoft in front of thousands of people, where he met Bill Gates. According to Wendy, Cole continued serving as a spokesperson for many years.
When he was 14 years old, Cole’s family sent him to the Youth Employment Solutions (YES) program of the Washington State Department of Services for the Blind. There, he gained invaluable skills through this summer program, which included living in Greek-system house at the University of Washington, learning how to cook and take the bus – which he used to get to the summer job he landed.
“Although he does have some vision and hearing, he uses hearing aids and is considered legally blind,” Wendy says. “Cole has always found his way. We worked hard to teach him how to be an advocate and when he did have challenges we couldn’t tackle, we’d sit down and talk about them as a family. My motto is ‘There’s always a way to make it work.’”
For example, when Cole wanted to be on the basketball team, Wendy was concerned for his safety because he was smaller than kids his own age. After talking with the director of parks, Cole was put on a team with younger kids to help coach and lead them as a mentor. “It worked out great,” Wendy says. “That’s how we approach things.”
Independence long before adulthood
The same philosophy carried over to high school. Cole attended a private school, and private schools aren’t required to provide the same services as public schools. But the smaller class sizes made for a better learning environment and gave him an opportunity to put his self-advocacy to good use.
“Cole did a marvelous job teaching the counselors and teachers how to advocate for somebody with disabilities,” Wendy says. “We always told him that to be successful, he would need to find a way to even the playing field. I encouraged him to always be kind about it, but to take a problem-solving approach and explain what he needs if it wasn’t being provided.”
His parents continued to be involved. For example, John taught Cole all about financial literacy and how to be fiscally responsible. Cole’s brother, Toby, was also an advocate for his little brother, teaching him about sports and other ways to fit in with the other kids the entire time they were growing up.
By the time Cole began college at the University of Puget Sound, he had all the skills and confidence he needed to be independent. After graduation, Cole spent six years working at United Way and has worked at Seattle Children’s Hospital for the last five years.
“He’s an amazing fundraiser and he’s so passionate about his work,” Wendy says. “We’ve always trusted him to make good decisions and he is a very wise soul at his age today. He’s been through a lot, and we consider ourselves to be very lucky that things turned out so well for Cole.”