You probably already know that TheBrainPossible.com is one of the Who Is Carter Foundation’s projects—a resource website for parents of children with neurological conditions. But our mission is about more than just resources: We also value the importance of bringing beauty and hope to every circumstance. That’s why The Brain Possible features a series of blog posts called Stories of Hope. The Brain Possible shares these real-life stories—of children and parents who have looked past a diagnosis and overcome tremendous obstacles—to be a source of encouragement to families who face similar circumstances: the journey is a bit easier to travel when you know you’re not traveling alone.

The story below is reposted with permission; you can read the original post here. Please share it with a family who will find encouragement from Cooper’s story.

Cooper’s Journey With Auditory Processing Disorder

by Jessica Burdg

Originally published on November 25, 2019

Cooper's mother, Adrienne, says she noticed things were a little different with Cooper from a young age. He struggled with fine and gross motor skills, and he had constant ear infections. When he grew a little older, around the second grade, she noticed he didn't run the same way his peers did and that it was more challenging for him to complete basic tasks, like tying his shoes.

During these early years, Adrienne was facing her own struggle: alcohol addiction. She concedes that, with her drinking, there were some symptoms that likely went unnoticed and some opportunities for intervention that went missing. When she joined Alcoholics Anonymous (AA) around the time Cooper was in fifth grade, she recalls reflecting on how much her son had already muscled through in his young life.

That year, in the thick of her recovery and entry into sobriety, is when it hit Adrienne that there could be something truly wrong. She realized Cooper wasn't simply behind and that there was something else at play. What, though? Then, they hit a wall: Cooper began struggling even more. 

"He'd fall and scratch his leg, and he'd scream so loudly that you'd have thought he broke his arm," she recalls.

The family explored multiple potential causes, including ADHD, frontal lobe processing delays, and executive function issues. They visited specialist after specialist and tried medication after medication. Cooper spent much of that school year in the principal's office, on so much medication that it was hard for him to stay awake in class. Later that year, Cooper was admitted to a children's psychiatric hospital. 

“He'd scream and rock, and we'd have to hold onto him so he didn't hurt himself. He was only in fifth grade," Adrienne recalls. "For me, as a parent and in recovery, that was the hardest thing I've ever had to deal with."

After that stay and with the medications rounding out, Cooper persevered. He did the best he could in school and was, as Adrienne says, "just a really good kid." She eventually talked Cooper into going to Alateen, a group for kids whose parents are recovering alcoholics and addicts. He was reluctant at first, as social situations had long made him uncomfortable.

"When he came out of that first meeting, though, he was smiling ear to ear," Adrienne recalls. "The biggest thing was finding that human connection with people who understood what he'd been through."

Although he felt less alone socially, Cooper still faced challenges in school.

"It was like -- you're being told something in class, and you don't hear everything, only bits and pieces," he says. "A lot of times, they thought I wasn't listening, but I was trying. I thought I was stupid because I couldn't comprehend anything."

Then, at one of her AA meetings, Adrienne was describing what was going on with Cooper -- a mixture of ADHD, executive function issues, equilibrium challenges, depression, learning problems in school -- a combination of symptoms that Adrienne says makes the journey to diagnosis like "chasing a ghost." A friend referred them to Responsive Centers Psychiatric Care for evaluation and testing. 

After testing, the center referred Cooper to one of the most prominent doctors in the field, Dr. Jack Katz. Still, they were told, there was no guarantee he'd be treated in the program, as Cooper’s diagnosis was still pending.

Ultimately, Dr. Katz reviewed Cooper's forms and found significant signs of Auditory Processing Disorder (APD), which led to a formal evaluation. Cooper's results clearly showed the presence of APD. Adrienne still remembers the call that he would be seen for therapy.

"I was so relieved, like the world had been lifted off my shoulders," she recounts, sighing. She'd been "banging her head against a wall, praying" for years, she says, to find a name for what Cooper was struggling with -- and, more importantly, a solution. 

"I was so grateful that this was something a professional could work with him on and NOT ME. Do you know how difficult it is to teach someone all the skills that fall under executive functioning when I struggle with most of those myself?" she says.

The Auditory Processing Therapy program with Dr. Katz has been, according to both Cooper and Adrienne, life-changing.

"It’s like physical therapy for your ears," Cooper says of the treatment, which (for him) involved repeating words in sequence and at different volumes, listening to sounds over varying background noises Dr. Katz played, and many other techniques. At first, Cooper says the therapy was extremely challenging -- sometimes, he couldn't hear the words Dr. Katz wanted him to repeat at all. However, after weekly visits -- and then biweekly visits, when they started to see improvement -- Cooper found success. At 14, he can now hear normally. 

Cooper and Dr. Katz grew close through therapy, too, and bonded talking about life, not just about auditory issues. Everyone -- Cooper, Adrienne, and Dr. Katz -- cried on the last day of therapy. 

As for Cooper, he says his life has vastly improved now that he can hear and function more like his peers.

"I have always had an issue with going to talk to other people. A lot of things have been hard for me, like socializing and especially school. I didn't feel like doing it [the work] because I knew the result I was going to get. I hated school because I didn't understand any of it," he says. “Now, I have an 87 in math and I've done all my assignments on my own. It feels much easier to listen, and I understand what the teacher is trying to say. It [Auditory Processing Therapy] changed my life in a very positive way. Not only was it just that, but I got to work with Dr. Katz, and he's the nicest person I've ever met."

Cooper says he hopes other people can learn about Auditory Processing Disorder and the therapy that treats it so they, too, can live fuller lives.

"To all the other people who have this and are out of hope, I just want to tell you that there is something that can help a lot," Cooper says. "I have a lot more going for me now. My world has gotten bigger. Just keep going and trying, and it will work out."

For Adrienne, her prevailing emotion today is gratitude. A mother of four -- including a younger son, Parker, who has behavioral issues and severe ADHD -- she cultivates an environment of honest communication in her household to help her family stay in that good place, even though it's scary at times. Cooper comes to her openly when he's struggling in school or with medication, for example, and she encourages Parker to do the same.

"It’s hard to be in this place. I know nothing about ADHD," she says. "But I knew nothing about Auditory Processing Disorder, either. And here we are. We are still here."

Retrospectively, Adrienne encourages parents to ask questions of physicians and specialists about alternate forms of treatment if the standard options are not fruitful. She says to be persistent and remember that you are advocating for someone who can't advocate for themselves. Also, gain an understanding from your child's perspective and talk to them about what is going on, while being honest and open to hearing what they have to say. Honor their feelings. 

She also encourages everyone to take opportunities to help other people whenever possible -- like the woman at AA who told her about the testing facility in the first place, and Cooper for his willingness to share his story at the young age of 14.

Of their journey, Adrienne says, "We've both been broken around the same time, and now we're healing and growing together. It’s been an honor to be on this journey with Cooper. I told him just the other day, 'I see you becoming a better human being. I see you taking your adversity and sharing it with other people. I don't know a lot of adults who would do that. This is what makes you a good man.' That’s what I'm proud of."

Note: For anyone seeking to learn more about Auditory Processing Disorder, Adrienne recommends Josef’s Journey, by Susan Van Wie, a children's book that highlights Dr. Katz’s Buffalo Model.