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A Person With Auditory Processing Disorder Answers, 'What Do You Hear?'

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At age 40, I was liberated by my Auditory Processing Disorder (APD) diagnosis. Of the four subtypes of APD: decoding, tolerance-fading memory, integration, and organization, I have been confirmed to experience three. My audiologist states I experience issues with decoding, tolerance-fading memory and integration. He states he cannot rule out organization as a potential component as well.

Post liberation, I find it easier to communicate with people because I can ask for conditions that facilitate my ability to hear and understand speech. But people wonder: What was I hearing before?

Let me explain.

Have you ever used speech-to-text on your smartphone and watched the screen as the program sorts through multiple potential words and spellings until it accurately or inaccurately decides what you were trying to say?

That’s how I hear. It’s almost like Siri and I were separated at birth.

When I hear speech, I sort through multiple potential spellings and meanings and try to match the vague sounds I hear to the context of the conversation. I picture the potential spellings of words in my head nonstop to aid in my understanding. I think of this visual spelling habit as my internal closed captioning system.

I hear sound just fine, but individual speech sounds are indistinct. When a word starts with the letter P, for instance, I simply don’t hear the P. You say the word “play,” and I hear “lay.” You say “piece,” I hear “ees.” Well, I hear “ees” if I’m lucky and there’s no background noise. Add background noise to the equation, and I’ll only hear a long e, or “ee.” That’s a hell of a lot of English words to sort through to figure out which long e word you were using.

OK, you may be thinking. That’s not that big of a deal, you obviously know people aren’t saying “ees” or “ee” to you, right? Just pay attention and you can sort it out.

Well, compound that with other phonemes that challenge me and it becomes more problematic. I can’t hear most L sounds correctly. So “puzzle” becomes “uzza” because both P and L are involved.

Imagine playing a game of hangman or Wheel of Fortune when you only have a few letters. That is what auditory life is like for me. I only managed to get this far because I have tremendous puzzle solving skills. Once you understand the dynamics, it is easy to understand why many people who have APD remain nonverbal.

In a face-to-face situation with no background noise I can supplement my understanding with lip-reading and get by. On the phone I have no such benefit. You can see how I might fall behind in conversation as I’m trying to sort out sounds and the person to whom I’m speaking is just rambling on full speed ahead as people are prone to do.

Think about the multitude of unnecessary words you sprinkle into phone conversations. Think about the noise behind you when you use the phone. Is there music? Are you sitting at a table where others are having a conversation? Are you in a loud office environment? Are you alternating speaking to me and also speaking to someone in the room with you? Ever turn your head from the phone to yell at your kid who was already screaming in the background? And God forbid, are you using the freaking speaker phone?

Now imagine someone like me on the other end of that phone conversation. I already didn’t stand a chance hearing 50 percent of what you said without visual context clues. Now you’ve just reduced my understanding to 20- or even 10 percent. I will probably ask you to repeat yourself, and you will probably become impatient and annoyed with me. You will think I’m not paying attention and when you later learn I have completely misunderstood something you said, you will assume I am stupid or that I suffer from a refusal to follow directions.

Think for a second about the social ramifications.

I have been absolutely shamed for my inability to hear, even in places where one might think people are peaceful and enlightened.

I once took a yoga class at a local community center. I had not yet been diagnosed with auditory processing disorder. When I arrived, the only spots left were in the back of the room, quite far from the instructor. Each time the instructor asked us to change asanas, I looked at the mirrors and at the movements of my classmates to understand what I was supposed to be doing. I simply couldn’t hear the instructor. I got through the entire series of classes that way and I really enjoyed the yoga experience.

After the final class, many of the students stuck around to thank the instructor and ask her where they could take more classes. The young woman in front of me told the instructor she had enjoyed the class but that she preferred to be grouped with advanced practitioners in a private studio environment because she found it irritating that the community center had mirrors and that some people, she said, while giving me a hard glare, were always looking at the mirrors and at other students instead of focusing on their own practice. I can hear tones perfectly well and her voice was full of contempt.

I felt so ashamed. I had been waiting in line to tell the instructor how much I had enjoyed the class and I had instead learned this other student had been so offended by the efforts I had taken to follow the teacher’s verbal instructions. I turned and left the room, and it took me years attempt a yoga class again. I knew I couldn’t participate without using visual cues, but clearly that pissed off other students. I didn’t know how else to get through the class, and I didn’t want to anger another practitioner.

I think of the many times I try speaking with people I don’t know well, usually coworkers, when they quickly verbally digress in a direction I couldn’t follow. I try my best to keep up and I simply can’t. Before I know it they are yelling, “It was a joke! Don’t you get it?” It becomes clear I’ve missed a cue, but I don’t understand what cue.

I respond by smiling like I understand, just to try to make the situation smooth again, but they can tell I don’t understand at all. Their humor then can turn to anger. “Don’t you have a sense of humor?” “Always so serious!” “Lighten the hell up!” Then they mutter something about what an “idiot” I am, and walk away. This has happened more times than I can count. It sums up my entire working life.

I remember a Thanksgiving dinner with family members, who due to family dynamics, I had not seen in several years.

“Do ya ha any is?” my stepfather asked me. There were lots of people at the dinner and the raised ceiling home was filled to overflowing with voices.

I had been staring at his mouth, trying to sort out what he was saying. But I simply couldn’t figure it out.

“Do I have any keys?” I guessed back to him. I knew he was a car enthusiast, maybe he wanted to see what I was driving.

His brows lowered and his expression darkened. I was familiar with this disapproving look from my childhood. It was the look he had given me when as a kid I always “just wouldn’t listen.”

“Do you have any kids?” he blasted back.

“Um, oh, no,” I replied as my face reddened. I really didn’t like making people angry.

These are examples of the things I hear, or rather don’t hear, and their real life implications for social interactions.

I hope this has shed some light on one presentation of auditory processing disorder. I further hope it encourages you to be patient with people who ask for repetition or exhibit misunderstanding. You can never presume the person to whom you are speaking hears as you do.

Image via Thinkstock.

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When a Boy Came Up to My Son During a Meltdown on Picture Day

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School picture day is usually a highlight for most students. I remember standing in front of the bathroom mirror weeks before the anticipated day, practicing my smile. Big or half smile? Teeth or no teeth? Which one is my best side?

When our homeschool group held its annual picture day, my son took his individual shots like a pro. We waited around for everyone else to finish, and then the call to gather all the children for the group picture came. This is when the tides began to shift.

The children were told to line up from tallest to shortest. Obviously, the older children knew what to do, but the younger ones, like my kids, looked lost and confused. The chatter amongst the adults and children grew louder, and when my son tried to call me for help, I didn’t hear him. He started to melt down. This is what it’s like to have auditory processing disorder.

Rearranging the students around for a group photo is to be expected, but when the photographer kept changing the spot where my son was to stand, that put him over the edge. In the middle of a sea of children, there was my child, frustrated and crying. God, please help me, I silently prayed as I tried to calm him down.

When everything was done, the walk back to the car seemed endless. I could no longer hold back my own tears.

During the incident when my son was crying, a boy his age reached out to him. “It’s OK,” he comforted. Afterwards when the children dispersed, this boy approached him again and gave him a hug. But my son wasn’t the only one who was the recipient of some needed encouragement. Two mothers came to me at the parking lot, hugged me and prayed with me. This was the good I believe God intended from a difficult situation: love through the selfless actions of others.

When we see someone in emotional distress, it’s not always easy to approach that person. We don’t want to get involved. We are at a loss for words. We are fearful of making it more awkward and worse for that person and for us. Often, we find it easier to turn the other way. The boy and the mothers did the harder thing. They came to us. And we were blessed by it.

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To the People Who Reach Out to My Child With Special Needs

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My child with an auditory processing disorder was just trying to make conversation, but clearly, the other kid just didn’t get him. “There’s something wrong with his brain,” I overheard him say to someone else.

At that moment, I wanted to cry but controlled it to spare myself from being the center of attention at a public place. I wanted to scoop up my child, put my arms around him and shield him from any hurt, intentional or unintentional, that will come from this world.

But I know putting him in a protective bubble isn’t what’s best. As cruel as the world can sometimes be, I believe there are people God has placed in my child’s path to reach out to him, and you are one of them. You may be thinking, “Me? What did I do?”

You greeted him.

A simple “hello” goes a long way. Far too many of us are preoccupied with our own world or the world being displayed on the tiny screen in our hands that we fail to look up and notice the person right in front of us who could use a simple smile to brighten his day.

You listened to him.

Not only did you say, “Hi,” but you asked the loaded question, “How are you?” Perhaps, you weren’t expecting a detailed catalog of all the Minions and their unique characteristics or a list of voice actors from “The Lego Movie,” but you looked at him and listened to it all.

You hugged him.

Touch is very important to him. I think it assures him of acceptance by you. Isolation is his fear, as is the case with many of us, so a handshake, a hug or a high-five allow him to experience the human connection that any person may seek.

You invited him.

He seemed content to be alone, but you went out of your way to invite him to sit with you. Honestly, social situations are still challenging for him, so he probably felt awkward about accepting the invitation. Nonetheless, you took a courageous step with a seemingly simple kind gesture.

You became his friend.

He doesn’t have very many friends. In fact, if you asked him who they are, he would list names of family members: brothers, sisters, cousins, mom and dad. But you, he mentioned you. You became his friend.

Approaching someone who’s “different” can be intimidating. I understand that. After all, if you’re not crossing paths, why take the detour to intentionally go to that person? Why risk the potential awkwardness of the encounter? Would it even make a difference?

Yes, it does. It certainly does.

Follow this journey on Less to More.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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4 Things I Want People to Know About Central Auditory Processing Disorder

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A kid stands there as you tell them to fold their laundry. This kid doesn’t respond. You may think he’s deaf, but just a few minutes later he says “OK.” He starts to fold their laundry, and you feel puzzled as to why it took this kid so long.

When I was younger, my mom had someone teach me basic American Sign Language. I wouldn’t look at my mom and would never respond even up to the age of 3 and 4. People would suggest to her I was being a disobedient child who was ignoring her.

After I had a hearing test, my mom was told that I had keen hearing like a dog so she knew I had an undiagnosed learning disability. She was a special education teacher so she had me tested. I was diagnosed with central auditory processing disorder (CAPD). I have seen some books about it, but I don’t think there’s enough information out there about it. So let me tell you a few things to help educate you.

1. My brain is wired differently.

It might take a few more seconds later for me to comprehend what you just said to me. I might not actually ever hear you. The words might be jumbled all over the place and I might hear something completely different. I might hear “cat” when you say “hat.” I might say, “What?” way too often. Sometimes after my “Whats?” I will respond because I finally heard what you said. My brain is wired differently and that’s OK. I been told since I was younger that some of the wires make it to my brain from my ear and sometimes they don’t.

2. School is difficult.

I can comprehend visual teachings right away and memorize them for life. But when a teacher provides only verbal instruction, it’s hard to understand the lesson. That’s why I need a note-taker or notes from the teacher. I may need to re-read the textbook to understand what heard in class. This happens both in elementary school, high school and college, too.

At 26 years old, I still need accommodations of a note-taker in courses in order to learn during lectures. School is only difficult because most of the time professors only teach verbally. We need to help the visual learners, too!

3. It’s a learning disorder for life.

There is a lot of information online for children who have or might have CAPD. Please understand it happens in adulthood, too. A lot of people mistake it for attention deficit disorder (ADD), but it’s really a disorder in understanding speech. I can understand one-on one-conversations better than group conversations. Every word from each person starts to jumble together and everyone’s voice is a background conversation. Bars, clubs and a group of more than three is difficult. I may start to stare into oblivion because my brain cannot separate words from sounds.

4. I’m not ignoring you.

I may ask, “What?” too much or I will move on from a sentence or a question because I can’t figure out what is being said. I’m not ignoring you. I just don’t want you to get mad at me from asking, “What?” too many times. I ask my family and friends to write down what they need me to do because if you only verbally tell me what you need me to do, I won’t be able to follow or remember. I need to see something or have it written in front of me.

Here’s some advice on how you help a person with CAPD at home, college and in life:

  • Keep the background noise to a minimum.
  • Arrange note-takers for classes.
  • Write things down for someone.
  • Make sure the speaker is looking at the person with CAPD. Make sure the person with CAPD is looking at the speaker.

And here’s some advice for people with CAPD.

  • Learn how to read lips.
  • Know it’s OK to ask someone to repeat a question.

There are more people in the world with central auditory processing disorder than you realize. Maybe you know someone, have a kid or you have it yourself. Maybe you just met someone or would just like to know more information. I hope this helps.

Lead photo source: Thinkstock Images

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Lawsuit Filed Against Sheriff Accused of Handcuffing Kids With Disabilities

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On Monday, August 3,  the American Civil Liberties Union (ACLU) filed a federal lawsuit against a Kentucky police officer for handcuffing two children with disabilities, according to the ACLU website.

Kenton County Deputy Sheriff and school resource officer Kevin Sumner allegedly locked handcuffs around the small children’s biceps at a school in Covington, Kentucky. The ACLU claims the experience was both painful and traumatizing to the children.

The lawsuit asks the U.S. District Court for the Eastern District of Kentucky to declare officer Sumner’s actions to be unconstitutional and a violation of the Americans with Disabilities Act, according to the lawsuit. It claims that the allegedly illegal handcuffing was an unnecessary and excessive use of force.

The ACLU released a video showing an 8-year-old boy shackled and crying out in pain. The video description says that he was left in that position for 15 minutes and that he was restrained because of behavior related to attention deficit hyperactivity disorder (ADHD) and a history of trauma. An unnamed member of the school’s staff took the video.

See the video of the incident below: 

The incident took place in November and the boy, a third-grader, is identified only as S.R. The lawsuit alleges that another child, a 9-year-old girl identified as L.G., was restrained in a similar way on two separate occasions because of behavior related to ADHD and other special needs.

Shackling children is not OK. It is traumatizing, and in this case it is also illegal,” said Susan Mizner, disability counsel for the ACLU, in a statement on the ACLU website. “Using law enforcement to discipline students with disabilities only serves to traumatize children. It makes behavioral issues worse and interferes with the school’s role in developing appropriate educational and behavioral plans for them.”

The ACLU is joined in the suit by the The Children’s Law Center and a Cincinnati law firm called Dinsmore & Shohl. The complaint seeks to change the policies by the Kenton County Sheriff’s Office in addition to requiring training for school resource officers in dealing with young children and children with special needs. It also seeks an unspecified amount of monetary damages against Sumner.

For more information, visit the ACLU website.

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What a ‘Great Day’ Means to a Person With Chronic Illness

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What makes chronic disease so challenging is that we’re never 100 percent. Our great days are different from yours; I promise you that. I think many of those who love us can misunderstand what a great day means to us, and sometimes feelings can get hurt. So let me share my parameters with you, and then maybe you can share yours or use this for conversations with your doctors, friends and family.

I have a baseline I consider my normal. I accept that my baseline is not perfect. It comes with serious and often excruciating pain and fatigue. My symptoms are managed with medicines that we dial up and down, depending on the severity of my symptoms. Within that baseline I have some great days, some good days and some bad days. This is my life and as a family we live in the baseline; we accept it and made peace with it.

So I have bad days in my baseline, too. Having a bad day means I stay in bed, watch TV and rest. On good days, I run errands, make dinner for the family and go to bed happy at 8 p.m. feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day, the next day is a PJ or sweats day because I need to take it easy. It’s a dance. It takes practice.

On the scale of 1 to 10, I will never have a day that’s a 10. My body is not in the 10-generating business. For me, a 10-worthy day would be a day without pain, and I’d have the energy to do a full day of work and activities.

I want 7’s and would love two hours of an 8. I accept and celebrate a few hours of a 7 or an 8 on any given day. So that’s my goal. I try to make the best use of the energy and pain management on a given day. I need to take a siesta every day if I want to make it to dinner. That means I need to lie down on my bed for at least an hour or maybe two.

This is my life, my normal and I’m happy in this place. I take great comfort in this baseline. I recognize to many that it may seem limited, but I’m happy here. I don’t need much other than to enjoy and bask in the great days I get to spend with my family and friends together.

My baseline changed in May after a simple case of strep throat developed after my daughter, Norah, went on a third-grade field trip. (Let me be clear: I would do that field trip over and over again because third-grade field trips are amazing.) I’ve been battling for months, and in the last week, well, my body decided it was time to crumble. When my thoracic pain was too intense and I couldn’t find a break from the pain, we moved out of our baseline into messy territory, which is a flare.

A flare for me is when the pain and inflammation is widespread, systematic and unrelenting.I won’t call a flare a flare until it’s kept me in bed a solid three or four days. In the past, a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done as an outpatient treatment, and I can sleep in my own bed. When my lungs and heart get inflamed, I like to sit with my back up against a wall. It makes it easier for me to breathe somehow. If I lean forward, the pain is excruciating, and if I sit perfectly straight and don’t move, it’s tolerable.

The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.

a family including mother and father and son and daughter

I’m writing this for all the other pilgrims with chronic diseases who may not have the support and love that I do. Many of our loved ones are so thoughtful with dinners, carpools and visits. If you’re a loved one of someone with chronic illness, here are some things I think you should keep in mind:

Don’t ask if we’re feeling better yet. Instead, ask us, “Is today a good day?” Sometimes nothing hurts more than being reminded you “were” doing well. And whatever you do, don’t ask us if we overdid it to get here. That doesn’t help. We all want the same thing: to be one day closer to our baseline. Please be patient with us.

Tell your loved one that you love them and that you’re praying and thinking of them.

Make us laugh. Nothing makes me happier than to hear stupid stories when I’m in bed. I think trashy gossip magazines and mindless books are wonderful.  

Spend time with us. Just last night, my husband, Jeff, took me in my PJs to the beach. I just needed to look at the ocean. That was perfection. I watched the kids pick up shells, and I could see, smell and taste the ocean from the passenger seat. So offer to drive the getaway car for a friend or offer your own sofa. After being stuck in your house forever, sometimes another venue is delightful.

Today, I’m one step closer to my baseline,  and I’m humbled and grateful for all the love, prayers and notes from my loved ones.

Follow this journey on Pilgrimage Gal.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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