“Hey, buddy. I know you’re getting tired, but hang in there a few more minutes,” suggested Chuck*. “You’re almost done with your homework. Let’s finish it and then take a break, OK?”
“I don’t want to!” countered seven-year-old Curtis* in no uncertain terms.
For most parents, this interaction would have been an opportunity for a teaching moment, but not for Chuck. Not on that day anyway. It was, instead, a time for rejoicing, as grateful tears rolled down Chuck’s cheeks.
Curtis’ defiant words were the most beautiful words Chuck had ever heard. They marked the first time Chuck had heard a single word from Curtis—or even his son’s speaking voice—in close to five years.
After nearly half a decade of special services and special education, and eight months of neurofeedback training, Curtis had finally spoken.
“Thousand-mile stares,” vicious daily meltdowns and poor sleep
Curtis entered the world healthy and vital. He hit all of his milestones until the age of 15 months when he began having what Chuck calls “thousand-mile stares.” He would become fixated on something no one could identify, and couldn’t be distracted. He had been speaking in four-word sentences but completely stopped talking.
Then the vicious, unrelenting daily meltdowns started, as did disturbed sleep lasting as little as four hours a night.
“He would bite, punch, kick, pull hair. He would attack his baby sister. It was bad. He was like a Tasmanian devil,” remembered Chuck. “I was constantly trying to figure out what was wrong. Was he hungry? Was he tired? Was he thirsty?”
Chaotic early years
Adding to the family’s difficulties was that when Curtis was two, Chuck was involved in a serious auto accident and suffered a traumatic brain injury. He was no longer able to work.
A year later, after giving birth to a daughter, his wife Angel* was diagnosed with terminal breast cancer.
The family was in chaos. There were appointments with doctors for Angel’s cancer treatment, appointments with doctors and therapists for Chuck’s brain injury and meetings with social services, state and non-profit agencies and schools for Curtis. Plus they had an infant daughter to raise.
Many schools, many programs
Curtis cycled through several schools and a variety of programs. Easter Seals gave him occupational and speech therapy. He went to a special needs pre-school.
He was given ABA (Applied Behavior Analysis) therapy to help his behavior. He was exposed to PECS (Picture Exchange Communication System) which teaches non-verbal people to point to a picture to communicate what they want. They also tried teaching him American Sign Language, which he didn’t respond to. He also underwent hyperbaric chamber treatments.
On top of everything else, with both Curtis and Angel unable to work, the medical bills piled up. Unable to see their way clear, the under-siege couple had to short-sell the home they had scrimped and saved for years to buy, and move into a rental.
Very little progress
In the meantime, Curtis was making small or barely perceptible progress. Still not talking. Still violent. Still prolonged tantrums.
Chuck learned about neurofeedback from another parent
One day while attending an event with his father for families of autistic children, Chuck met a woman who had a child Curtis’ age with autism. She suggested he try neurofeedback because her son had benefitted from it.
“She told me: If he does neurofeedback, your son will be able to talk,” Chuck remembered.
Chuck told Angel about it. She was in favor of it if the hyperbaric treatments Curtis was currently doing didn’t work.
A mother’s dying wish
On June 1, 2017, Angel passed away. Curtis was six years old. Among her dying wishes was that Chuck take the life insurance money he would receive and use it for neurofeedback services.
“She told me ‘Brain training is going to do wonders for my son,’” recalled Chuck. “I don’t know how she knew that, but she did.”
With the recommendation of the psychologist he was seeing for PTSD related to his auto accident, Chuck took Curtis to Center for Brain.
In it for the long haul
“Mike Cohen (director of the center) told me this would be a long process, but that was OK because I was in this for the long haul,” said Chuck. “I was determined to fulfill my late wife’s dying wish.”
Curtis speaks and starts behaving and sleeping better
It took twice-a-week sessions for eight months before Curtis spoke that first sentence, but Chuck said it’s been worth every mile driven and every dollar spent.
“When Curtis spoke for the first time, I reached up to the sky and said, ‘Angel, he’s finally talking!’ I was only sorry she didn’t live long enough to hear his voice.”
Several months after that fateful day, Curtis continues to speak and put together simple sentences. He says hi, bye, yes, no, thank you, please, mommy and daddy. He’s singing lullabies. He’s more patient. He has fewer, shorter tantrums, and his sleep has gone from four or five hours a night to eight hours.
“Before, if I told him to clean his room, he would go into a rage. Now he will say no, but then he’ll just huff and puff and go do it,” Chuck said. “And he has stopped lashing out at his sister.
“I am getting a lot of positive feedback from school since he’s been doing neurofeedback—lots of reports of good days and keeping his hands to himself,” Chuck continued. “He no longer tries to fight, bite and pull the teacher’s hair.”
At the beginning of last school year (Curtis had started neurofeedback training the previous summer), the school established a behavior program for him that allowed him to go as often as three times a day to a “blue room” to calm down if needed, but they only implemented it twice during the entire school year.
“Something good is coming out of his neurofeedback training,” said Chuck. “I knew there wouldn’t be overnight results from neurofeedback therapy, but I’m going to hang in there. My late wife foresaw the future, and the Lord gave her the ability to see it.
“Neurofeedback has been a blessing to my son and to our family.”
*Names changed to protect privacy