JACKSONVILLE, Fla. – Sheryl Johnson always knew her son, Alex, was different.
“I remember when he was 4 or 5 sitting in the back of our car and I was driving someplace, and he rattled off how he was going to re-engineer a carburetor. He was giving me all these details and he said, ‘Doesn’t that sound good, mom?’” explained Johnson.
She said Alex was extremely bright, loved the outdoors and was a really curious kid.
As he grew, she noticed he had trouble making friends. By middle school, he had started to withdraw and his grades had started to drop.
“His freshman year of high school we started to push a little bit and I remember sitting at the dinner table and insisting that he tell us whatever it was that was going on,” she said.
Her son admitted he had been bullied and told her, “he was feeling very sad and very depressed and that he had gone on the internet and looked at different things, like ways to hurt himself.”
Johnson and her husband immediately pulled him out of school and got him the help he needed. He was battling anxiety and depression, mental health illnesses that continued throughout his high school years.
By the time he graduates from high school, she said he was better. Much better. She remembers feeling like they had made it, a sense of relief that he was doing fine and looking forward to going off to college at the University of Georgia. She stayed in touch with him regularly, he came home to visit and Alex seemed like he was controlling the anxiety and depression that had plagued him during his high school years.
Then at the end of his freshman year, Alex called her.
“He said, ‘Mom, I’m in trouble and you need to come,’” explained Johnson.
When she arrived at her son’s dorm room, she could tell he had been struggling.
“He was disheveled. His roommate had told me that he had not really gotten out of bed or come out of his bed in a week or two. He was failing almost all of his classes, so we pulled him out of class and brought him home,” Johnson said.
Again, they made sure Alex was getting help. After a few months at home, he returned for his senior year at the university. But then came a devastating diagnosis. Alex had a seizure, and it was determined he had epilepsy.
“His whole world was turned upside down, not only was he battling anxiety and depression, all of a sudden he had another disease he had no control over,” said Alex’s mom.
This is when she recognized a gap in the medical system that she said did not offer any kind of support system for a young adult battling depression and a physical condition.
“Because he was 22 years old, they (the doctors) were shutting us out with the notion he’s an adult and you need to let him figure this out,” described Johnson, who said it was very frustrating to watch him fall apart without her being able to provide any substantial help. “To be honest, the doctors who were caring about his physical health were not at all interested in the ancillary challenges it was having on his mental health.”
She said she wished there had been a support system in place for her son, like the one she experienced when her mother was diagnosed with breast cancer.
“Not once did someone say to us, ‘Let her muster through this on her own. She’s an adult, you should just let her do that on her own.’ Instead, they invited us into her care and asked us to come, they asked us to help participate in her care,” Johnson said. Something she said never happened with her son’s medical treatment.
“The absence of that in the mental health area is because providers and society and patients and families all, unfortunately, have the notion that a mental health disorder is somehow a personal choice and that somehow the person should figure it out, whether they have help or not, and no one else is invited in,” said Johnson.
Alex died one month shy of his 23rd birthday of an accidental fentanyl overdose. Even though Johnson insisted her son get drug tested regularly, tests which came back negative, she knew people with mental health issues often turn to recreational drugs to try to help them feel better. She believes her son made a bad decision in his battle with depression and it cost him his life. Now, she wants to prevent the same thing from happening to another mother’s child.
Sheryl Johnson created Alex’s Dragonfly program to close the gap she discovered in the medical system to prevent teens and young adults from falling through the “cracks.” She met with Dr. Terrie Andrews, director of the Behavioral Health Department at Baptist/Wolfson, and together they have implemented the program within the Baptist Health system.
Andrews said there is a tremendous need for mental health support for teens and young adults, especially right now. The hospitals have seen a 300% increase in the number of emergency behavioral health admissions during the pandemic. Young people are feeling isolated and alone and need help.
“The care coordinator, through Alex’s Dragonfly program, wraps the family in a system of care that helps them navigate the often complicated journey that comes with managing mental illness,” explained Johnson.
The program was implemented in March and has been a huge success, said Andrews, who explained it is designed for people 16-29 years old. The Baptist Foundation is trying to secure permanent funding for the program but needs help. The program is only temporary.
“We need to convince people to see mental illness and brain disease the same way we see other diseases and give that compassion to the people who have it,” explained Johnson about the need to fund Alex’s Dragonfly program.
While she struggles every day, every holiday, every time she drives by the cemetery where her son is buried, she chooses to remember her son as the smart, inquisitive boy who was thrilled when a dragonfly landed on his nose when he was a child. A picture that is now the image to promote a program that she hopes will help other young people win their battle with mental health disease.