September 2023 Special Needs Living Akron/Canton

Meet Caitlin Joy Yeargin! In The Words Of Her Father

BY ROCCO YEARGIN

It’s hard to describe how I felt when our doctor advised us to “live our lives and see what happens.” He just told us shortly after Caitlin’s (Katie) birth in 2001, that she had something called “Ring Chromosome 13,” a rare genetic disorder that results in the deletion of genes on the 13th chromosome. Of course, no two cases are the same, and as the geneticist shared it is impossible to know exactly how the disease would affect Katie. So, we did just that -- we lived our lives and waited to see what would happen.

Katie’s first few months were relatively uneventful, marked only by some slower development than we experienced with her older brother. She was, like all children, advancing on her own curve. At nine months old, however, Katie stopped eating entirely. We tried everything – different foods, textures, levels of mush -- nothing worked. It became evident that the same basic lack of muscle control that affected Caitlin’s speech and motor skills was affecting her digestive system as well. The answer at the time was

inserting a GI feeding tube through her nose to provide nutrition, hoping it was a stage that Katie would outgrow. But she didn’t, at least not yet. Unfortunately, the GI tube was not a good solution because it required frequent replacement. Each time required baby Katie to swallow the tube to insert it. To say the least, she hated it.

When Katie was two years old and still working through the feeding challenges, her mother, Michelle, was diagnosed with lung cancer. Our focus shifted. To get Katie’s feeding struggle under control and easier to manage, we decided to have a feeding tube surgically inserted so that we could reliably feed Katie by syringe directly into her stomach. Her “Mic-Key” button, the name the doctors gave it, was the pin to the problem that we needed at the time.

Turning to cancer, Michelle underwent treatments that were as intense as they were ineffective. After an 18-month battle, she passed away. Katie was just shy of four years old. When Michelle passed

Katie lost her biggest advocate, her mother, who fought for her own life, while struggling to offer Katie the best life possible.

A year after Michelle’s death we moved to Green to make a fresh start. And a year later, I remarried, and together Katie’s new stepmom, Melinda, and I refocused on her development. Over the next few years, we worked closely with Katie’s school teachers creating and implementing Individualized Education Programs (IEPs) to help her realize her potential.

Despite everyone’s best efforts, it became clear that Katie would never learn to read or write, her speech would not miraculously improve, and she would never approach an average level of function. Through it all we discovered how truly extraordinary she is in so many other ways.

By the time she reached her tenth birthday, Katie had learned to eat again and perhaps fell too much in love with food. Now, we must control her portions, or she will overeat! And although Katie still requires significant help with self-care at twenty-one, her real gift to the world is the purity of her joy. Blessed with an infectious laugh, Katie causes everyone to smile. Through mentoring programs at school, she has made so many friends that it is impossible to take her anywhere without classmates stopping her to share a hug or kind words. She loves life, and her “people,” and looks forward to every day.

In reflecting on Katie’s challenges and successes, here are a few lessons I have learned as a caregiver, father, and friend:

1. Embrace uniqueness. While it is tempting to become frustrated or lose patience with Katie’s lack of progress at times, I recognize the great privilege it is to be her parent— especially when I reflect on the effort her birth mom made to share that privilege. I’ve learned to celebrate the fact that there is no one in the world quite like Katie, and I get to walk with her through this journey.

2. Choose joy. The years have taught us that there are several things that make Katie happy such as animals, music, and her favorite people. So, we’ve learned to focus on those things rather than her limitations. For more than ten years, Katie has enjoyed therapeutic horse rides at Pegasus Farm. She LOVES her grandma’s cats and playing with Thor, our “notas-intimidating-as-his name” Yorkipoo puppy. She also participates in Challenger Baseball for special needs kids through the Green Baseball Softball Federation.

Over the years, Katie has developed a musical affection for The Beatles. As such we make sure we catch the Beatles tribute band, A Hard Day’s Night, every time it comes to the Kent Stage. And when the band members take the stage, her screams of delight and exuberant dancing bring joy to everyone, especially her fellow fans witnessing her “Beatles bliss” for the first time.

3. Fins people who care. As Katie's academic limitations became more obvious with age, her need to belong became more pronounced. Every parent of a special needs child grapples with social acceptance. Katie’s very committed aides and teachers at Green High School met this need by becoming our second family. It was this sense of belonging that had Katie bound for the school bus every morning. A big reason for this was Katie’s relationship with one of her favorite “people”, Flo Dujanovic, or Mrs. D as Katie calls her, her classroom aide. Mrs. D’s kind heart helped Katie in numerous areas from social maturity to developing fine motor skills.

Like Mrs. D and countless others at Green Local Schools, finding others willing to personally invest in our child has proven the most effective therapy. For Katie, the desire to please a friend is the best motivator in helping her thrive.

4. Help the next person. I have always been inspired by people who have used a bad break or tragic event to help others by creating a foundation, assisting with a nonprofit, or simply helping someone navigate a similar challenge. The truth is a parent of a special needs kid is in a unique position to help other special needs families. For me, as a member of Green City Council, this means using my position and influence to create a more inclusive community for special needs residents. It means supporting legislation to hire an ADA consultant to recommend improvements to all City Parks.

At a more hands-on level, I’ve helped organize focus groups, made up of parents of special needs children, to recommend structural improvements to city playgrounds, and inclusive programming for special events resulting in a sensory-friendly time during the annual Trick-or-Treat Trail and Easter Egg Hunt. At the end of the day, I find that helping others in the community dealing with a similar problem lightens the load for all of us. This is the true meaning of community. Today, Katie attends an enriching program at Modern Support Services in Green. And she is satisfying her lifelong dream of becoming a farmer at Gentlebrook Greenhouse in Hartville. Fittingly, Caitlin means “pure,” and Joy is her middle name because Katie brings pure joy to our lives every day.