Meet the Ashby Family - Paul, Lisa, Tyler & Caleb

By Maria Smietana : Photos by: Heather Gregg - 21 Vines Photography

After their second son Caleb was born, Lisa and Paul Ashby learned that he had Down syndrome. They already knew from ultrasound images that he would be born with clubbed feet, but the Down diagnosis was a surprise. “Those first few months were very difficult with all the tests and doctors we saw to check out Caleb’s heart and ensure no other major medical problems needed to be addressed,” Lisa recalled. “Caleb had casts on when he was 4 days old to help correct his clubbed feet and we would go to Dr. Berrios at Ortho Indy every Friday for almost his first year of life to do the progressive casting.”

Other orthopedic surgeries followed, including four tendon transfers and a tibial rotation. Caleb also needed several surgeries for his ear infections. “Those times were difficult, but we had a wonderful support system and Caleb was so strong and resilient during all of this,” Lisa said. “His strength and attitude helped us realize that no matter how difficult life seems, we can get through it.”

Two years ago, when Caleb was 10, he was diagnosed with type 1 diabetes, leaving the family with yet another set of new challenges to deal with. “We were so fearful of what was to come and how he was going to handle the insulin injections and everything else that comes with this diagnosis,” Lisa said. But Caleb again rose to the occasion. “He demonstrated his strength as he took everything in stride. He takes his insulin and carries his monitor with him. No matter what challenges come, he handles it with a caring heart.”

Caleb and his brother Tyler (16) attend Noblesville schools, where Caleb is on the unified track team. He has been paired up with a Best Buddies peer buddy at Noblesville West Middle School this year. “Caleb does struggle some in group settings and often will take a while to interact, but these groups have been wonderful to help him open up and participate,” Lisa said.

Caleb receives outpatient therapy services at Theracare Outpatient Therapy Services (TOTS), where Lisa works as an occupational therapist. Outside of school, he takes swimming lessons and has participated in adaptive dance classes with Kids Dance Outreach (KDO), an Indianapolis-based non-profit that gives kids of all ability levels and socioeconomic backgrounds the opportunity to participate in quality dance education that fosters confidence, teamwork, and persistence.

Probably the most profound challenge that Caleb has dealt with throughout his young life is speech apraxia. Essentially, apraxia is difficulty with the strength, timing, and coordination of muscle movements necessary for intelligible speech. It manifests to varying degrees in almost all children with Down syndrome. As speech is a critical factor in social interaction, apraxia is understandably a cause of frustration and stress for both the speaker and the listener. “Caleb can communicate,” said his mom, “but it is difficult for him to do so verbally. He does have a communication device, and his school has been wonderful with helping him learn to use it.”

Like most families with a special-needs child, the Ashbys struggled with a fear of the future. “We worried a lot about inclusiveness and whether [Caleb would be] accepted,” Lisa said. “What we have learned is that the more we advocate for Caleb and allow him to show people how wonderful he is, the more people care for him. He has a great group of friends from his school who involve him and love him!”

Having supportive friends and family has also helped make it easier to live through Caleb’s challenges, and both Paul and Lisa say that having an older brother like Tyler is a huge blessing, “as he does so much and is such a wonderful advocate and caregiver for Caleb.”

Lisa and Paul urge families with special needs children to get involved with community organizations, whether it’s groups that serve all special-needs kids, or those that focus on a specific syndrome. “Down Syndrome Indiana and Gigi’s Playhouse Indianapolis have been wonderful resources for us,” Lisa said, “and we have met such wonderful people who have become friends through these groups.” ENABLE Special Needs Planning, LLC, a consultancy, which helps families create comprehensive plans for their child’s future and financial security, has also been very helpful to the family.

Lisa noted that her family has learned over time to stress less about what Caleb can’t do, and instead focus on everything he CAN do and how special he truly is. A couple of milestones in particular have left them with joyous memories. “I honestly didn’t think Caleb would be able to walk on his own with his low [muscle] tone and clubbed feet,” Lisa said. “So the day he left his walker behind and started walking was such a wonderful day. We also never thought he would do a race but when he did his first 1-mile fun run at Disney World with us, it was such a magical day. He was one of the last kiddos to finish, but his joy and excitement had the entire spectator section cheering for him and we were all in tears. We even got an escort from Minnie mouse across the finish line!”

No matter what challenges Caleb faces, the Ashbys try to lead a family life that is as normal as possible. They all enjoy running, loving on their two dogs – Bonny and Penny – swimming, watching movies, and going to Broadway shows. Caleb loves to sing and dance, so he’s particularly drawn to musicals. “His favorites are Newsies, Lion King, Shrek the Musical, and every song on the Greatest Showman soundtrack,” says his mom. “He loves Maroon 5, anything Disney, and watching scary movies.”

Eating out, attending games (they’re big fans of the Colts, Pacers, and IU basketball), and even traveling aren’t much more complicated for the Ashbys than for any family with kids. Disney parks and anywhere with a beach are favorite travel destinations. They like Mexican restaurants, where Caleb usually goes for the nachos.

It’s clear that Lisa considers her sons to be an enormous blessing in her life. Of Caleb, she says he has taught her how to live more in the moment and to be more pure at heart. “His smile will make you melt, and he has this wonderful way of making a bad day good with his hugs and smiles. He is such a shining light and brings joy to so many.”

Now that Caleb is nearly a teen, the Ashbys give back to the organizations that have provided them with a lot of support over the years. “We volunteer at Down Syndrome Indiana and love to participate in the Buddy Walk,” Lisa said. She also volunteers for Gigi’s playhouse Indianapolis, where she has led fitness groups. This year, Tyler, Lisa, and Caleb are helping lead the Gigi’s kitchen group to teach basic cooking skills.

If Lisa could have one wish, it would be to help develop or open an inclusive gym and fitness center with a sports complex and dance classes all in one spot. “It would allow families to have more direct access and participate in these activities together,” she said.

If you would like to share your personal or family story or nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.