Diagnosed with autism as a toddler, 8-year-old Tyler is now thriving as he and his family manage the ups and downs of life with the condition.
Diagnosis and Early Therapies
The first provider to mention autism to Jessica, Tyler’s mom, was a physical therapist working with Tyler when he was about two and a half years old. At first Jessica dismissed the notion.
“No, no, he’s fine. Some kids are just quiet and late bloomers,” Jessica told herself. She had to process the information, and after doing some research Jessica realized that Tyler checked all the boxes.
“I can cry about it—which I did—or I can put on my big girl panties, and we can rock this,” Jessica remembers. “And at that moment, it was like, this is what we’re going to do.”
Official assessments happened when Tyler was 3, confirming the autism diagnosis. At that age, Tyler was completely nonverbal, and strangers terrified him.
“Everybody’s world just kind of changed,” Jessica says of receiving the diagnosis. The family, which includes dad, Donnie, and older brothers Joshua and Jacob, reoriented around Tyler’s condition and needs. “Having a kid with autism does not just affect that child, it’s the whole family,” she says.
Early Intervention: Applied Behavior Analysis
Jessica has worked at St. Francis Medical Center for 20 years, so her access to information about healthcare helped the family navigate Tyler’s care. Early intervention is key to better outcomes for children with autism, including Tyler.
Once he was diagnosed, Tyler immediately began Applied Behavior Analysis (ABA). This approach has been incredibly beneficial to Tyler, and Jessica has learned so much along the way as well, including vocabulary to use, how to break cycles of behavior, and more about how Tyler’s mind works.
Jessica knew ABA was supposed to help, but she had no guarantees. “I finally had to quit worrying about tomorrow. I stressed out so much about it,” Jessica says. “We’re just going to worry about today, just day by day.”
Jessica also had to adjust her expectations about what Tyler’s future might be. “You learn not to focus on will they get married, will they go to high school,” she says. “You have to celebrate every milestone no matter how big or how small.”
Graduation from Therapy
A major milestone for Tyler happened in August. After five and a half years of ABA therapy, he was able to graduate because of how well he’s doing. He had met all the goals set by his behavioral therapists.
“We were really at the point where he could have been the therapist to some of the other kids,” Jessica jokes. Tyler continues to have occupational therapy.
Access to Our Network of Care
Shortly after his autism diagnosis, Tyler began having seizures and was diagnosed with epilepsy as well as idiopathic hypersomnia. Many children with autism also have sleep problems.
“Autism is bad enough, and then we got hit with seizures and a sleep disorder,” Jessica says. “It was a lot!”
Tyler sees five specialists within the Our Lady of the Lake Children’s Health network, and the family finds itself in Baton Rouge from Monroe multiple times each year for various medical visits.
Jessica appreciated the intermittent leave offered by the health system, allowing her to balance taking Tyler to therapy while she continued to work.
Caring for the Caregivers
Parents and caregivers of children living with autism must remember to take care of themselves. When Tyler was first diagnosed Jessica says she ate, slept and breathed therapy and doctor appointments, failing to take time for herself.
“It’s a roller coast of emotions. There were good days, and there were days where I’d just sit and cry,” Jessica says. “I didn’t realize in the beginning how important it would be to ‘take care of myself also.’ My mental health is just as important as everything I was doing for him.”
Even with a phenomenal support system, it was exhausting for Jessica. She recommends other caregivers ask for and accept help and take breaks when they can.
Planets and Baseball
People living with autism often have intense interests in specific subjects, and that’s true for Tyler. Right now, he’s obsessed with planets and the solar system and can share a lot of information about his favorite subject. Tyler also plays baseball with the Dixie Diehards, a league in West Monroe for players ages 5 and up with all types of disabilities, and he loves it.
“Tyler is the poster child of ‘you’d never know,’” Jessica says. “On good days you’d never know he has autism. He just looks like a really talkative 8-year-old.”
If you suspect your child needs an evaluation for autism, start that conversation with their pediatrician. Learn more about Our Lady of the Lake Children’s Health Developmental Medicine.