Jason Futch
reporter2.riverbendnews@gmail.com
Tommy Lee is a 12-year-old Live Oak resident with personal interests and hobbies. He's an aspiring YouTube content creator who puts creative videos together to show his artistic side. He also enjoys swimming and knows all the flags of the world, down to their colors and design.
He does all this while living with autism and diabetes, to which he is insulin-dependent.
"It was a surprise," Stormy Lee, Tommy's mother, said of his diagnosis. "Because it wasn't something that we thought we would have in our family. We didn't have autism on either sides of our families."
Chris Lee, Tommy's father, echoed Stormy's sentiments, adding that as an infant, Tommy's development seemed normal and that he had been meeting his milestones. "Probably about a year after he was born is when we noticed his progression began to move backward," Chris said. "I sat there wondering what was going on and had asked my grandfather about it, and he said, 'Son, sometimes they are just slow starters. Give the boy some time, and he will find his way."
Tommy stopped talking shortly after his first birthday, and before long, he began developing sensory issues. "He wasn't able to feed himself and couldn't walk until he was 18 months," Stormy said. "He started fluffing with his hands, and his sensory issues began increasing."
After noticing Tommy's symptoms, his parents took him to a doctor when he was 3 years old, who diagnosed him with autism. Though it was a surprise to both parents, they both consider Tommy's journey an adventure. "People look at it like a disability, but I look at it in another way," Chris said. "I'm kind of jealous of him. He doesn't see hate, jealousy, bad days or anything like that. Every day to him is his best day."
After Tommy's diagnosis, the Lees began reaching out for resources on how to care for a child with autism and learn more about the diagnosis itself. They reached out to organizations and clinics, which have been helpful with Tommy's progress. They also believed that Tommy would be non-verbal, prompting them to start learning sign language.
When Tommy turned 4 years old, he began seeing a therapist with the Florida Elks Children's Therapy Service in Ocala. Since that time, the milestones he achieved as an infant returned, and was able to speak. "One day, he just started throwing words out," Stormy said. "Eventually, we just couldn't get him to stop talking."
As Tommy got older, he started teaching himself sign language, and started learning more about computers. Homeschooled, Tommy learns more through flashcards, sight words and computer work that is assigned to him. He has also learned advanced mathematics, progressing into long division. Tommy also continues to take part in events held at the library, including art and study times.
Both Stormy and Chris have expressed the importance of resources available to children with autism in the community, and both have been significant advocates locally for those on the spectrum. Chris, who is an investigator with the Suwannee County Sheriff's Office (SCSO), has helped to spread the word about the agency's Operation Lifesaver program. It is a program that assists families who may have a child or adult living with autism or other cognitive disorders in emergency situations.
"I can relate to those who take part in the program," Chris said. The program predates his involvement with the agency, but when he started working with SCSO, he made sure to take part in it. Since then, he has been able to help several residents who have children on the spectrum, along with other special needs, to sign up for Operation Lifesaver. He has also made connections with some of those who are involved in the program. Chris credits Sheriff Sam St. John and Chief Deputy Buddy Williams for strengthening the program.
While his parents continue to advocate for him and see to his needs, Tommy still enjoys the simple pleasures of childhood. Among his favorite activities are using a tablet or phone to film short reels and videos for his YouTube channel, TommyLee-pe4mr. With more than 2,300 videos and 537 subscribers, Tommy shares everything from playing with his toys to voicing over drawings and animations. One of his standout series, "Number Lore," features individual videos that count numbers in order, each with Tommy providing creative voiceovers.
Both Stormy and Chris say that some of the biggest advice provided to them is to choose battles and not consider what others' opinions may be of Tommy. They emphasize that there is nothing to be ashamed of when raising a child with autism. Chris also said that those who need help should not hesitate to ask.
The Lees take each day as it comes, closely watching Tommy's progress as he grows. For now, they're grateful for the unexpected journey their son has taken them on — one filled with challenges, joy and resilience. While the path ahead remains uncertain, they hold on to hope that one day, Tommy will set out on his own adventures, ready to chart his own course, wherever it may lead.