Our Story
The Far Away Baby
We welcomed our second child, Henry, into the world in April 2008. He arrived five-and-a-half weeks early and had some circulatory issues, but was otherwise a healthy baby. We expected some minor developmental delays due to his premature birth, but within months it became apparent that Henry was developing “atypically.” As a five month old baby, Henry lay in his rocker in the kitchen and I reflected that he barely seemed mentally present or connected to anything or anyone around him. He was a very serious baby who rarely smiled and engaging him in gazing, or getting him to respond to cooing, took great effort. He often had a “far off” look in his eyes and getting him to focus on the world right around him was difficult. We were anxious that something serious was amiss. Alicia had her suspicions, but I tried to convince myself that these were the expected delays associated with being a preemie. He’ll catch up, I thought. He’ll probably just be a late bloomer.
Diagnosis: ASD
After his first birthday, our pediatrician recommended we have Henry seen by a developmental specialist and Henry was subsequently diagnosed with ASD (Autistic Spectrum Disorder). As an LCSW and psychotherapist, Alicia knew that early intervention was crucial. We began bi- and tri-weekly intervention visits by outside experts while we were active in our own purposeful interventions on a daily, if not minute-by-minute, basis. We worked to help Henry join in play, stop his perseveration on motion (the rolling wheels of cars and trains could transfix him for hours), teach him to point, to speak, to look at us. He was very sensitive to loud or sudden noises and strong smells. We worked with him to tolerate sensory input, increase his desire to form relationships, and to coax him into being a part of the world around him more often. Alicia and I were reading all the books and studies we could, educating ourselves on any and all therapies out there that might help.
Echolalia
When Henry was about three-and-a-half years old and we really weren’t sure that he’d ever speak, he suddenly seemed to acquire some limited language. But it was echolalia, meaning he’d repeat what he heard on TV, from us, or other children. It was language out of context and nonsensical but he was using words, and it gave us hope that one day he’d be able to speak to us with meaning.
It was less than six month later that we like to say Henry decided to join us out in the world where we all lived. His language started to become more coherent, he looked at us, started to engage in play a little bit, began to develop humor, and rarely, but sometimes, allowed us to be affectionate with him for brief moments. It felt like a miracle and yet, like the evolution that we were waiting for all along.
Mainstreaming and Meltdowns
Henry entered a special preschool program with a one-on-one aide by his side to assist him with play, accompany him through his meltdowns (which were frequent and severe), keep him on task during academic and structured play, and coax him into the real world when he slipped back into his “far away” place (which was also frequent). It was apparent that he was bright academically and he learned to use his newly formed humor and kindness to make some friends. The next year Henry was mainstreamed into a normative classroom for kindergarten with a full-time aide. Despite his considerable progress, those first years of school were extremely challenging. Each year would begin with a lot of preparation and great hope followed by much difficulty, lots of meetings with the teachers and aides, and lots of meltdowns and frustration from Henry. In the fall of his third-grade year, we wondered if he was backsliding. His teachers were calling us every other day with reports of tantrums, refusal to participate, physical outbursts, and increasing social alienation. We investigated other schools and despaired that maybe a mainstream school was just not going to work for him. Many people, including his doctors, suggested we put Henry on medication to address his symptoms. Alicia and I understood that doing so might make his and everyone’s life easier in some respects, but we worried about the side effects. We felt we needed to investigate other therapies to address the underlying condition instead of just managing his symptoms.
Cautious Optimism: Neurofeedback
This is when we found Neurofeedback. A family friend, who was also a psychologist, had studied with Sue and Siegfried Othmer (two of the earliest developers of Neurofeedback) and told us about her success with high-functioning autistic children like Henry. She also used Neurofeedback therapy with children and adults with ADHD, anxiety, sleep issues and a host of other neurological issues. We were cautiously optimistic, but Alicia and I decided to begin our own research before jumping in with Henry. Shortly after, we began began our education to become Neurofeedback practitioners (“Neurotherapists”) and practiced with other family members and friends with different issues and goals. The early results were very promising.
Tangible and Unbiased Results
Henry’s Neurofeedback training began in the winter of his third-grade year. We didn’t tell his teachers anything. We were still in the “cautiously optimistic” stage but also wanted to be certain any results were real, tangible, and unbiased. Within two weeks of beginning Henry’s training, the phone calls from school trailed off. When they did call in the months that followed, it was to talk about a positive shift they’d seen, seemingly out of the blue, and to inquire about what we were doing differently. The tantrums and outbursts had gone down dramatically. He was joining in more often with his classmates, and he needed his “walk breaks” less often. He was able to access more expressive language for speaking and writing and his capacity to sustain academic effort and tolerate change grew.
They asked us if we had medicated him!
At home we were seeing the same things: he talked more, his eye contact improved, he sought us out to play and to interact. But perhaps the biggest moment came one night at bed time when he curled up in Alicia’s arms and declared that it was now ok to kiss him. After a lifetime of avoiding physical affection, Henry began to actually seek it out. You can only imagine our joy!
To this day, Henry is known as a funny, bright, and sensitive child who still slips between the here-and-now world and his own inner world. He’s in a mainstream class with a very hands-off aide in a mainstream school. Though he’s tested yearly and continues to hold the ASD diagnosis, if you met Henry today he would look like a child with ADHD. He has friends and typical interests for a kid his age, but he still has a particularly hard time understanding abstract ideas, inference, handling change in routine as well as the usual sitting still, or concentrating for even short periods time. But the difference in where Henry was to where he is now has been nothing short of breathtaking.
Our Own Journey with Neurofeedback
Henry’s experience with Neurofeedback drove our decision to open Tenafly Neurofeedback. But truly, that was just the tip of the iceberg. We’ve marveled in our own individual gains as well. As we worked with friends and family, we watched steady progress made on reducing depressive symptoms, “brain fog,” anxiety, and ADHD. Our ability to reach new levels of peak performance, often referred to as “the zone” by athletes and high achievers, (characterized as the calm, confident effortlessness associated with emotional and mental self-regulation that Neurofeedback training fosters) was and is truly a revelation. It’s been said that all Neurofeedback training is “peak performance” training and we whole-heartedly agree. We know we’ve stumbled onto a tool that few people know about and feel it’s our calling to share it.
Contact us today to see if Neurofeedback can help you or family member. There is no cost for the initial consultation.