Geri made up her mind early on that her son Joey would be treated like every other child. Yes, he was autistic, but he had to learn to live in the “real world,” and she was going to make sure he knew how. Thanks to a lot of love, effort and two years of neurofeedback, that goal is becoming a reality.
Like so many other parents, Geri was caught off guard when her son, who had progressed normally for the first 18 months of his life, began exhibiting bizarre and distressing behaviors.
“Soon after getting a DTP shot (diphtheria, tetanus, whooping cough) he stopped making eye contact and behaved like he was deaf,” Geri recalled. “We’d call his name, and he wouldn’t answer. We had his hearing checked. It was normal. Fragile X syndrome was ruled out. The doctor said, ‘He’s a boy. He might just be delayed.’”
Diagnosis and early treatment
By the time Joey was two, he had begun spinning, flapping his hands, walking on his toes and speaking to no one. “I was panicked and didn’t know what to do,” Geri said.
“A family member suggested he might have autism. I had never heard of it, but a neurologist confirmed it.”
When Joey was 2½ Geri and her husband Tom enrolled him in a pre-K program for developmentally delayed children at St. Mary’s Medical Center in West Palm Beach.
That class would be just the beginning of a long and bumpy road that Geri and Tom hoped would help bring their child back. He was given speech therapy, occupational therapy, and ABA therapy. (ABA therapy provides a structured environment to help children with autism learn skills such as speaking). He was exposed to the PECS system, which uses pictures instead of words to help children who don’t speak communicate.
“We bombarded him with everything we could think of that was non-invasive and non-drug,” Geri said. “I was determined to help him the most natural way possible.”
The 24/7 Job
In the beginning, taking care of Joey, now 8, was a “24/7 job” for Geri, while Tom took care of their older son Nicholas, now 12.
It was exhausting. Joey would sleep about three hours in the evening, then awake and be up all night. Geri got up with him to ensure he remained safe. Joey threw terrible tantrums. The family was in crisis. Nicholas felt ignored. Tom and Geri experienced significant distancing in their marriage. Something had to give.
Geri began including Nicholas in Joey’s treatments. He sat in on his speech therapy and helped the therapist ask questions. She enlisted Nicholas to help Joey with his homework, and to throw a ball to Joey. Joey’s lack of coordination taught Nicholas about patience. Nicholas began including Joey when he got together with his friends.
By age five, a little of Joey’s speech had returned, but it wasn’t enough.
Further complicating the family situation was the fact that Nicholas wasn’t doing very well in school, and they would now also have to search for how to help him.
A chance meeting charts a new course
A little over two years ago Geri met Carolyn Cohen, wife of Center for Brain Training’s founder Michael Cohen, at church, and shared her concerns about Nicholas to Carolyn. Carolyn suggested Geri bring Nicholas in for neurofeedback, which she did.
“I had no intention of exposing Joey to neurofeedback,” said Geri. “I figured we were already doing a lot for him.”
One day Michael Cohen suggested to Geri that they try neurofeedback on Joey, which she agreed to do.
“Once he started doing neurofeedback, it seemed like he woke up,” Geri said. “Neurofeedback was tapping into something that got the wires in Joey’s brain to connect again.”
Joey began sleeping from 9 p.m. to 6 a.m., and his speech dramatically improved.
Geri can hardly contain her joy when she recounts her astonishment at the improvement in Joey’s verbal and reasoning skills since doing neurofeedback.
He recently said, “Hey, Mom, there’s no soap in the dish. What happened to it?” And when they used an alternate car to go somewhere because Geri’s was in the shop, Joey wanted to know if the other car had broken down.
“Before, he would have gotten into a different car and not questioned it,” Geri said. “Now he’s questioning everything like a two-year-old would do. ‘What does this mean?’ ‘Why does this happen?’ For the first time in years he’s trying to learn about the world.”
Hugs for Mom
Joey had to be taught how to hug, but now he knows how, and he does it. Neurofeedback, says his mother, has calmed his central nervous system better than anything they’ve ever tried, and he’s a “mellow kid” whose tantrums are significantly reduced.
Geri doesn’t see her child as handicapped and has the same expectations of him she has of her other son.
“I’ve never treated Joey like he was different,” she explained. “If we go out, Joey goes with us. I let him know that he isn’t always going to get his way, and he gets a time-out if he misbehaves. He’s always been told what I was expecting of him, and he’s behaved accordingly. People are wrong who believe autistic kids are in another world. My child knows exactly what he’s doing wrong. He might need extra steps to understand it, but I get him to repeat it back to me. I knew if I didn’t do this from the beginning I’d have a different story to tell.”
She doesn’t even see Joey as a “special needs” child, just an “extra needs” one.
“I know in my heart Joey is going to be fine,” said Geri. “I see him for who he is, and not what he has. He’s allowed to be who he is.”
Geri and Tom plan to continue neurofeedback for as long as Joey is benefiting from it, and say they are grateful to have found something that works so well, is so cost-effective, non-invasive, and is non-drug.
“It’s calming, like an exercise class,” she said. “You need it to help you focus.”