My wife and I learned about Childhood Apraxia of speech (CAS) when our son, Kai, failed to develop his speech naturally. He didn't make the normal vocal sounds heard between the typical ages of 7 to 12 months, nor did he speak his first words during the typical developmental ages of 12 to 18 months. As his desire to express his thoughts and feelings grew, so did his frustrations and our sense of helplessness. After multiple medical visits, my wife and I were given various possible diagnoses, but none felt like they fit. Therefore, we kept searching for answers. Our parental instincts wouldn't allow us to settle. After another year and a half, we learned that he was born with CAS.

As a scientist and father, my first question was, what could I do? My wife felt burdened with the why and carried the weight of day-to-day support. She dealt with a school system that didn't understand what he needed while simultaneously wanting to force him into a remedial category so that he'd have a label. They needed to place him in a box. Finding a speech pathologist who knew how to treat this rare disorder took months. If that wasn't enough, fighting to get insurance coverage was constant nightmare. My job was to ensure that we could afford to get him to therapy multiple days a week. This battle continued for years.

Once we learned to accept that he may not develop speech, my wife began teaching him (and me) American Sign Language (ASL). She learned ASL in college, never thinking it was a skill she'd ever have to put to use. Kai's speech therapists told my wife not to teach him because it would slow his speech development; her gut told her otherwise. She put ASL flashcards on the walls all over the house. She also took him on field trips to the zoo, where he learned to sign for the animals he saw. Sign language enabled him to express his thoughts and feelings better, and his hunger for more words grew. In the end, her gut was right. It had the opposite effect.

After learning basic ASL, Kai's verbal skills began to flourish, filling us with a new sense of hope for the future. Also, during this time, my wife and I became intimately familiar with the scarcity of awareness and resources for CAS. So, we organized the Houston Walk for Childhood Apraxia of Speech to help support other parents and reduce the time needed to find support and services. The goal was to develop a supportive community that connected children with CAS, their families, and speech pathology professionals. We organized and led the walk for about eight years. In our first year, we walked as eight people. Eight years later, the walk consisted of more than two hundred people comprised of children, friends, families, and speech pathology professionals. Bridges connected the gaps, questions were answered, and bonds were built. The vision had become a reality.

Although Kai is now eighteen and doing well, I choose to continue supporting the Apraxia community by helping to increase awareness and funding.

On August 18, 2024, I will compete in the Ironman Kalmar race in Sweden. It will be my privilege to do so in honor of the children with CAS. As I fight to finish the race, I will carry them with me (many of their names will be written on my custom race kit).

Please join me in supporting Apraxia-Kids by donating directly to the foundation or purchasing custom running gear (or both).

Gear can be purchased from Varlo Sports:

https://www.varlocustom.com/apraxiakidsfallorder

Anyone who donates $50 or more can send me the name of a child with CAS and I'll write their name on my race kit and take them with me to the finish line.