Charlotte mom seeking solutions to help parents after son's autism diagnosis
"Don't expect the worse, but hope for the best."
That’s the advice Tonya Tolson was given when her son was diagnosed with autism.
"Now he's like the best SpongeBob-loving, pretend-play guy you could ever meet," Tolson told WCNC's Sarah French.
But that wasn’t always the case for Tolson's son, AJ, who was diagnosed at just 18 months.
"As an educator, I looked at some of the signs. And by one-year-old, he was not speaking," Tolson said. "It was no mama, no dada, nothing. So the babbling you know, he had reached all the milestones up until 12 months, and then he completely dead stops."
Tolson, the Mountain Island charter school's assistant principal, said she just knew something wasn’t right with her son.
"So we got him tested. And I was persistent. They actually had a little pushback, because they were like, it's really early. You might want to take some time to see if he talks, he's a boy, boys talk late. And I said, 'No', this mama bear sees something is wrong." Tolson explained.
After AJ’s diagnosis, Tolson says her family felt lost.
"Honestly, I blamed myself. I said, 'what did I do?' You know all that mother guilt. My husband was like he didn't understand he was doing so well from the crawling from the walking at 11 months. It was just a lot of stuff we didn't understand," Tolson said. "And we had a wonderful person that came in and talked us through the diagnosis and that's been where we are ever since, and I decided then we were going to be advocates for people that didn't have a voice and that was him."
The idea of AJ and the Cool Kids was born, and it continues to grow.
"What we wanted to do is get the diagnosis with the parents, sit parents down and give them resources they can go to like right away," Tolson explained. "Autism diagnosis from day one is expensive. You have OT, which is occupational therapy, PT, for physical therapy for people that are not walking and speech therapy. If you don't qualify financially, you have to pay out of pocket. So our foundation provides financial resources for them to pay for those services."
Tolson says she wants to be there for parents who are just hearing that “autism” diagnosis because she knows exactly what they're going through.
"A lot of autism parents don't get seen. They just get judged. And we'll be out somewhere and they'll look and for instance, my child still has a pacifier, but it's a comfort. It's not like, Oh, he's six, and he has a pacifier. But you don't understand," Tolson explained to French.
And she insists “Understanding” is key.
"Be sensitive, you never know what someone's story is. That's really important. You, you don't know why that mom is pulling her hair out in the grocery store. You don't know why that child is having a tantrum, they may be nonverbal and can't tell their mom they're frustrated," Tolson said. "You just never have any idea the struggles that autistic moms and dads go through to get through a day sometimes."
Tolson is gearing up for their second annual gala, which will take place this Saturday, August 5, at the Harvey B. Gantt Center, sponsored by Levine.
For more information on AJ and the Cool Kids, click here.