Fierce.
That’s the brand of advocacy Jeremy Kredlo has been practicing ever since becoming the custodial parent of his granddaughter Kylee shortly after her birth 13 years ago.
Although his life is quite different from what he had imagined, Kredlo, now almost 50, finds great purpose and satisfaction in parenting Kylee and being a grandparent to his other granddaughter, five-year-old Ramona. Both have special needs.
“People say I’ve been a blessing to my granddaughters, but the reality is that they have been a blessing to me,” says Kredlo. “I’m a much better person because of them as they’ve taught me empathy, compassion and patience. If they hadn’t come into my life, I would be significantly more selfish, self-absorbed and impatient, and I probably wouldn’t like myself all that much.”
No choice but to advocate
Kredlo’s journey began in 2008, within moments of Kylee’s birth. That’s when doctors discovered that she wasn’t breathing and sent her to the Newborn/Infant Care Unit (NICU), where they determined she had been oxygen-deprived for an extended period of time, either during her birth or shortly before. The result was severe damage to 95% of her brain, as well as frequent seizures.
No one expected Kylee to survive, but she did and was eventually sent home with her mother. However, within just a few months it became clear that Kylee was in a great deal of pain and needed more care and a better quality of life than her mother could provide. So Kredlo stepped in.
“I became Kylee’s temporary guardian and provided her care, which included everything from scheduling home care nurses to giving her baths, from performing her physical therapy to getting her to and from doctor appointments,” says Kredlo.
While the hope was that Kylee would be able to return to living with her mother, doing so wasn’t in her best interests, so Kredlo made the difficult decision to go to court to become Kylee’s permanent legal guardian.
It’s since been a rocky road with many unexpected twists and turns. “For instance, it wasn’t until Kylee was a year old that I learned she was completely blind,” says Kredlo. “And for years she’d scream, sometimes for eight hours at a time, clearly in excruciating pain.”
Nothing Kredlo did consoled her. But thankfully, she no longer experiences such long stretches of pain and some of her other medical issues have abated as well. “As a result, she now smiles more,” says Kredlo.
Kylee’s personality has developed as well. “She’s playful and a little mischievous,” says Kredlo. “And although she can’t communicate with words, she does express her needs by raising an arm to indicate yes. She even plays jokes on people, which is pretty amazing.”
Lessons learned become a passion for advocacy
“Those amazing, rewarding and often heartbreaking experiences helped me realize my purpose,” says Kredlo. “In those early days, when Kylee first came to live with me, I wished I had an instruction manual, guide or mentor who could help me be successful in advocating for her from the very beginning, rather than me having to learn every lesson the hard way.”
Jeremy attributes his effectiveness as an advocate to the skills he learned as an information technology project manager. “In that role, I learned to never to take no for an answer,” says Jeremy. “I also learned how to assess risks, sequence tasks and escalate problems, all skills that enable me to get Kylee the services she needs.”
It was with this goal in mind that Kredlo began sharing the lessons he was learning as Kylee’s advocate. He also became a “Helping Parent” to other Arc of King County-Seattle parents whose children were living with disabilities. And finally, he began teaching others how to advocate for their children and grandchildren with special needs via “Telling Your Story with a Purpose,” a class designed to help parents of children with special needs learn how to use their personal experiences to advocate for policy and system changes.
Along the way, Kredlo realized how difficult it was to navigate the system. “I was an English-speaking, financially stable project manager with more than a decade of problem-solving experience and yet I found it nearly impossible to stay on top of Kylee’s care,” says Kredlo. To help others do so, he recently became a certified Living Proof Advocacy coach and is expanding his reach. “The work I’m doing brings together my love of storytelling and my love of advocacy in a way that enables me to make a difference in the lives of others,” says Kredlo. He’s also writing a book tentatively titled Advocacy for Badasses, and offering coaching services to anyone who wants to build their advocacy skills.
“I got certified by Living Proof Advocacy because its mission is so closely aligned with my work,” says Kredlo, who will be sharing his advocacy story at the Washington State Fathers Network annual conference on July 30.
It’s a remarkably inspiring story about a grandfather’s love and how that love transformed him into a fierce advocate who is now helping others do the same for their loved ones.
