Growing UP with Auditory Processing Disorder (APD)

"He was a big baby. Huge."

“Aaron's” mom told me, during a session about a year and half after we'd met. Aaron was a teenager now, nearly 10 inches taller than when I first saw him at age 13.

Now hulking at just under six feet, Aaron spent the past five months tutoring my six-year-old son in Minecraft, working on his leadership and organizational skills while helping my son learn to work collaboratively. Over five months, from March through August of the Covid Pandemic, this hardworking teen enticed my difficult-to-teach son to follow multi-step directions in building structures, navigation, and team combat and how to be appropriate in conversational turn-taking. Aaron, in turn, got the chance to acquire skill in teaching and leadership.

Just yesterday, my son asked me if he could play with Alex this weekend as a reward for being good during school. “Not this weekend, sweetie. Alex needs to focus on school.”

“But soon?” He gazed at me hopefully, the beginning a tear glistening in one dark eye.

“Maybe soon. I’ll ask his mom.”

Aaron's mother, Martha, was tiny, barely skimming the surface above five feet. Her son, now heads and shoulders above her, and my son Zack’s hero. Martha, herself, was one of mine.

“Tell me a bit more about how you knew something wasn’t going well with Alex? When did you first suspect he had Auditory Processing Disorder (APD)?"

"Well," she began, twirling her straight dark hair, "I think it must have been how incredibly tired and emotional he was, whenever we took him anywhere noisy. That and how it seemed like when we spoke to him, or really when he had to listen to anyone, that he'd just not answer right away. It's like there was a few seconds where he had to take it in, time to process what he heard, before he could figure out how to respond."

"Also, he was so fragile. I mean, not just for a boy, but he'd fall into tears when he thought he was missing out on understanding. Or in noisy places. He just didn't do well with picking out what he was trying to hear. His hearing wasn't perfect, but it basically was so close to normal that Kaiser wasn't willing to help us out with anything like hearing aids. They said he essentially was normal. But I knew that wasn't really true. He acted more like he had a hearing loss. He was constantly melting down, constantly mishearing us and his teachers, and even his friends. He was so upset in school, and as a special education teacher myself, I knew he wasn't performing at his potential. He was SPENT by the end of the day. He'd basically just collapse, either into tears or into bed.”

“It’s been a big year for Aaron, right Martha? He went through the low-gain trial and got permanent aids, we added Bluetooth about a year later. He’s in homeschool now. He’s become a giant. He’s learning to teach and mentor. What accommodations have you put in place and what changes have you seen?”

“Oh, yes, the Bluetooth. Aaron didn't mind the clip on Bluetooth on his first LGHA - he loved the sound. He even loves the hearing aids, and I’m constantly surprised by that! I wondered, as an image-obsessed teen, if he'd find some way to be irritated by them. But he doesn't. He takes such good care of them, and he's constantly worried he'll hurt them or lose them.

"I think we realized he was hearing a difference from the aids within the first few days. He even came to me and said, "Mom. The world just sounds so much more clear!" And that was a big deal to me, because my kid rarely spoke up about anything. Aaron has never been a “behavioral kid,” he’s just always the one no one notices because he hangs back and is quiet. He doesn’t try to take control. Though the Minecraft tutoring has really helped him with speaking up more in terms of advocating for himself.

“Zack was like that too. At least when he was little.” I interjected. “No one thought he had any problems since he wasn't a behavior problem, just a dreamer. Off in the corner playing with trains and trucks and Legos while everyone else was running around shouting."

"Right," Martha continued, "The dreamers are typically ignored in the classroom. I really have to keep on the other teachers to pay attention for those kids, or they easily slip through the cracks." Martha directs and teaches in a special education program at a well-regarded private academy.

"And Aaron was one of those spacey kids. Teachers didn't really notice that he was falling further and further behind. And since I work in the schools during the day, I don't normally see children after they get home. At first, I thought it was normal how tired and cranky he was at the end of a school day. I didn't realize he just wasn't hearing clearly enough to take things in like the other kids. I didn't realize he was running a race on potholes, while everyone else was on new cement.

"It felt like every year he was in school, he had fallen further behind. I finally started searching for answers. I don't know why I waited as long as I did. I'm a special education teacher with a Master's degree. But I guess it's hard to be as observant about your own kid, especially when he's your only kid.

"We noticed other things about him. He was a somewhat floppy baby. Low muscle tone. We tried to address that with exercise and now he’s spending time with his father surfing. But early on we noticed he had some pretty significant trouble with memory, with organization. But not behavior, like I said, that’s most of why no one really noticed the problem.

Once the kids were expected to not only learn to read, but to read to understand, everything became a bit clearer. Aaron hadn't had any easy time with phonics. He'd memorize sight words and try to avoid breaking words apart. From what I learned later, that was probably because he just couldn't hear the differences between certain speech sounds."

"Like /f/ and /th/," I said, remembering she'd actually reminded me of this during our last session together.

"Exactly. You ran a spectrogram to show us the difference between the sounds and they are so close!"

“I remember making a program that would distinguish it a little more for him. Does he use it much? It doesn’t look like it from the data logging.”

“He did at first and then it seems like he just didn’t need it anymore. I only hear him make those /f/ and /th/ mistakes once every six months or so now. Like when he was talking about putting a “wreath” up on the door but he said “reef.” It’s really neat how you’re able to help him hear the difference between those sounds just with a couple of adjustments on the hearing aids. He’s self corrects now.”

“So, remind me how did you find me? Low-gain hearing aids doesn’t seem like it would be an easy next step from what you’re describing about his early childhood. It seems like it would feel like a pretty drastic decision, to take a child with normal hearing and make him look “disabled” by giving him hearing aids.”

“It wasn’t easy at all. No, it was rough! First, we went through a whole array of testing and through a local audiologist and she diagnosed him with an Auditory Processing Disorder. If I remember correctly, a lot of the difficulty was temporal, and she described it to me as his not being able to hear the differences between small spaces and sound. It was pretty severe and she said it wasn’t surprising he had trouble understanding fast speech and seemed to process so slowly. She said he had to to fill in the gaps that he wasn’t hearing clearly.

“She recommended, you know, their typical stuff. FM system like Phonak Roger, auditory training on a computer, all of that. We were desperate so we did everything she told us too. The Phonak Roger Focus FM was the top of the line, and it cost a ton, thousands and thousands, and Aaron DESPISED it. He really didn’t like how isolated it made him feel because he couldn’t hear the other kids in the classroom. He felt vulnerable because he couldn’t control the volume. Sometimes it was so loud and he couldn’t turn it down. It made him feel on a leash, like the teacher had full control over his hearing.”

“He hated all of it though. The auditory training was so boring! I had to force him to do any of it, let alone enough of it to really change his auditory pathways, I guess. And what if I stopped? Was it really going to stick or was I torturing him for nothing?

“We were putting tons of money in and I just didn’t have it. We just didn’t see improvements that were significant enough that I could justify the expense. I’m a teacher, and you know that private school teachers make less than public, and my husband is a church leader and we’re living in an affluent area, where we barely keep afloat."

"You do get to surf and paddleboard, though." I grinned.

"Well, yes, and that's the main reason we put up with it. It's great for Aaron's low-muscle tone and balance and for mine and my husband's peace of mind. But I wish we'd found you earlier, rather than wasting time and money on outdated technology and that auditory training.

"What were you expecting the auditory training to do?" I asked, never having been a fan of simulated methods of auditory training.

"The audiologist said if he followed the program, it could “cure” his APD by ‘stimulating growth in the brain.’”

"I'm still trying to figure out how they can claim that," I mused. "Considering it's practicing a skill using settings that are totally artificial and don't really apply to most kids' lives. Also, even if it helps at first, research doesn't show that it lasts."

"It just wasn't worth the constant fight," Martha continued, “Actually, by the time I realized how behind Aaron really was, I felt forced to pull him out of school entirely. He just couldn’t learn in a traditional classroom. He's been homeschooled since."

"How has that been? With you working full time running a special ed program in person.”

"My husband and I made it work. We are lucky that his schedule has some flexibility. We’re a lot luckier than other families in that way! Homeschool was hard, and still is, but it’s oh much better! The curriculum program we use is great. It captions all his classes. Because it’s pre-recorded, Aaron can pause and take his time to think. But even with homeschool, I knew we weren’t doing quite enough. Aaron was taking forever to complete his work, and he was still exhausted. I mean, kids should be able to be kids, and he was so tired. It was like watching an old man!"

"So then you found me?"

"Actually, I lurked and read up on you. I found you about a year earlier before I decided to contact you. I was reading everything you posted about these low-gain aids, and all the parent and adult testimonials, and I was there pretty much from when you started. It seemed pretty unreal that so many people had done well.

“People are more likely to post about when they’re happy than when they are unhappy,” I agreed. “It definitely is a biased sample because nobody wants to admit, no matter how much I ask them to write about it they don’t want to talk about when things don’t work. And it definitely happens. I’d say a quarter to half of the people we work with don’t see huge changes within six weeks. And teenage boys are the worst! They don’t comply with the treatment half the time because of all sorts of reasons that are a mystery to everyone who’s not a teenager!”

”Aaron is a pretty compliant kid and when I asked him if he was interested in doing this, he said he would go along with it because maybe it would help.”

“That’s pretty incredible for a kid that young to realize they are struggling and be willing to consider anything like this.”

”I know. He’s a special kid. But I still wasn’t sure that I wanted to take any kind of a leap of faith that might hurt my child. I mean what if it were too loud and it caused him noise damage? But the more I read, the more I realized that it was no more dangerous than the FM system and probably less. I talked to some of the other parents like you encourage us to do.

I also tried to find more information online, Looking at Google Scholar and other research places like Pub Med, even in other Facebook groups, where moderators post research. In the end, I realized you’d openly posted nearly all of the studies you'd found on your site, and I finally came to the conclusion that the only option was to do the trial. It seemed safe enough - low risk financially and very low risk to my son. Actually, I thought it was riskier to not know than to do it.”

“I remember your first session. Aaron was so tiny!”

“He was! And now he's a giant! With a big man voice. It’s so weird to hear him talk and see him towering over me. And more than his size, he's just not the same kid anymore!

“It’s only been a year, but he’s grown up so much! He’s way more confident. Processing speed way up, between the aids and, of all things, building in Minecraft. He's still a slower processor than average kids, but it's night and day better. He's doing great academically and has friends, mostly online due to Covid. But still, he takes responsibility for his schoolwork."

"I know. When he told Zack he couldn't tutor him in Minecraft anymore because he had to focus on his freshman schoolwork, Zack was destroyed. I've never seen him cry so hard. It's like he lost his first love!"

"I think he'll will be back," Martha reassured me, Aaron's audiologist and Zack's mom, "He likes teaching, just like me. But first he has to figure out what he can and can't handle."

"I was so impressed he realized, at only fourteen, that he had limits in what he could handle academically." I admitted.

"Yes, it's been a big year of growth for him," his mother responded, "In many more ways than one. We're so glad to have found you. I can't imagine where we'd be if I'd just gone with the original audiologist's recommendations, instead of following my instincts."

”I can’t wait to see what happens next.”

“Me too,” agreed Aaron's mom. “I used to be so scared, I just couldn’t see a real future for him… Now, I can see the man he’s becoming, and I’m so proud of how hard he’s worked and how far he’s come.”