Wednesday, July 17, 2013

PICTURE STORY: WHAT'S WRONG WITH ME, A personal story, Central Auditory Processing Disorder

What’s Wrong With Me?

A Look at Central Auditory Processing Disorder
From a Child’s Perspective

Written by Norma L. Brumbaugh
Illustrated by LaVonne R. Shively

Copyright 2006

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Central Auditory Processing Disorder is a physical disability that affects the ability to understand spoken language.  In the process of hearing what people say, the person with CAPD is not able to clearly hear the word sounds and so the message gets confused or garbled.  They hear the sounds but the individual parts of each word are not easy for them to hear correctly.  The words become confusing and may be understood to be something completely different than the original word, in some respects like a word in rhyme form.  It is similar to listening to the words in a movie when you are not quite sure of their exact meaning when the sound is fuzzy but you find yourself trying hard to make words that fit with what the actor is saying and doing.

The story you will read is true in content.  It is based on the experiences of one of my own children.   My fourth child was born with this condition.  This story is about his experiences although I use a female character in the story.  He was twelve years old when he was diagnosed with CAPD.    Before that there were many times when I would ask him a question or tell him to do something for me and he would do something quite different than I said.  I would ask him what he thought I said and he would respond with some statement that had similar word sounds but not the same words I had spoken.  I noticed if his back was to me he could not pick up the words I was saying, they were unclear to him.  While this was happening at home, it was at school where it became most frustrating for him.  He was not able to keep up with the demands of the classroom simply because he could not process the information quick enough.  It made him seem lazy and disorganized.

Once my son was aware of his auditory processing disorder he was able to speak for himself.  He learned to ask his teachers to seat him toward the front of the room so he could hear them clearly.  He asked them to speak facing him and to write assignments on the board or on paper so he would not miss something he did not hear well.  He received permission to have a writing pal who would take notes for him during lectures since he was unable to keep up with the teacher’s talking and write notes at the same time.  He worked harder at becoming more organized and responsible for his learning and education.

 My son is sixteen years old now.  He is able to manage in school quite well but he finds that he still misses some instructions and confuses information at times.  Words spoken by the school intercom are especially hard for him.  In sports it is challenging for him if he is unable to see the person speaking the command.  But essentially he has learned that it is up to him to make sure he is getting the information he needs.  The most helpful thing of all for him is that he knows what his physical limitation is and he is able to take responsibility for it.

 You can imagine how hard it is to try to do well in school when there is something that prevents you from hearing what you need to hear.  This story is a way to help you see that others around you may have some sort of disability that makes learning extra hard for them.  There are many types of learning disabilities that children in your school are trying to face while at the same time they are trying to become stronger students.  It is my hope that you will be kind and willing helpers or even become more aware of the challenges that face some of your classmates through the reading of this story.  It is of one child’s struggle.
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What’s Wrong With Me?

I was just a little kid when my Mom and Dad first noticed it.  I didn’t talk as soon as the other kids my age.  When I did start talking, I was hard to understand.  Some of my words didn’t make sense or were out of order.  Most of my sentences were short or incomplete.   My brothers and sister thought it was cute when I mispronounced their names like Onas for Thomas and Bon for LaVonne.  I came up with some of my own words but usually I just didn’t say much.   I still wasn’t speaking sentences as a toddler so my mother got some ideas how to work with me from a speech teacher.  She wanted to help me develop my speech.  When it was time to enter kindergarten I understood many things but I was not able to express them very well to the teacher.

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Kindergarten was fun but I had trouble paying attention, even during story time.  It was easier thinking about other things than trying to listen.  I liked doing seat work.   During seat work I watched my friends so I would know what to do.  The teacher always went too fast for me to follow.  When my mother volunteered in the classroom she noticed that I wasn’t watching the teacher or listening to what the teacher said most of the time.  Often I was looking at other things around me as if I was in my own world.   It would happen other places too.  I just didn’t seem to be focusing my attention where it was supposed to be.   Adults started telling me to look at them.

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 I liked answering questions in class but sometimes it took me a long time to say it.  It was embarrassing when everyone was staring at me while they waited for me to finish what I was saying.   But the teacher said I had good ideas.  In fact she thought I had a very creative mind and knew a lot about nature and other things.   At parent conferences she talked with my parents about her concerns but she thought I probably would catch on later.  She liked my positive attitude and that I was a good helper.  My mom had a talk with me about being a good listener.
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As I got older, sometimes I got to go to speech class.  I liked speech a lot.  The speech teacher and I played word games and I got to say lots of things.  She liked to hear what I had to say.   She wanted me to use big sentences.  Sometimes I got to be a helper with some of the younger kids in her room.  My mother talked with her and learned that she was working with me to develop my ability to communicate language using more words and expressions.  I guess it took me longer than most kids my age to say a complicated sentence.   I worked with the speech teacher for three years.  Sometimes she made me feel like I was okay and even smarter than I thought I was.

Actually, I liked school until third grade, and then it started getting harder.  We had to write all the time.  I tried to keep up but all the kids were faster than me.  Sometimes I didn’t do it right and the teacher scolded me.  She would say things like ‘pay attention’ or ‘hurry up’.  She would get kind of angry with me.  I decided I didn’t like school and asked my Mom if I could be home-schooled.  Mom started volunteering in my classroom every week to see what was going on.  At home I became upset about everything and would get angry at my sister and brothers.  I hated doing homework.  One time I had to do the same assignment three times before it was good enough for my teacher.  Mom asked me what would make me happy and I said, “If I could just play by myself with nobody else in the room.”   My answer surprised her and I think it made her sad.
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It got so bad that I started thinking I was stupid.  I just wanted to hide.  If people would just leave me alone maybe it wouldn’t be so bad.  Sometimes I drew mean pictures and was mad at everyone and my teacher got impatient with me.  She said I was a smart kid but I wasn’t trying.  My Mom and Dad were concerned.  They talked to the teacher and principal in a special meeting.  It was decided that I should have a physical check-up.   Mom took me to see the doctor and after the exam he said I was fine.  They asked about attention deficit disorder but the doctor didn’t think that was something I had.  He also tested my hearing too.  It was normal.   There didn’t seem to be anything wrong with me.   My parents were still concerned especially since I started not liking school and had a terrible time getting my schoolwork done and turned in.

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One thing that has always bothered me is noise, background type of noise.  It is hard for me to concentrate when people are making noise.  I don’t like it when there are distractions while I am trying to do my school work.  It bugs me when I can hear the TV or the radio, even the computer or people talking.  The sounds are just too much for me especially when I am trying to think.   I even prefer to play in a quiet room.  It’s hard to be in a big family where there is always someone talking, playing the piano, or listening to music or the TV.  I often go in to the kitchen to talk with my Mom while she is making dinner.  That is one time when I won’t get interrupted or distracted.  I like to talk with my mom because she takes the time to listen to me while I get my thoughts out.  I’ve always wondered why I am sensitive to sound.

It seemed like I had more troubles than most kids.  It got frustrating when I forgot stuff, like not turning in my homework when I had done it the night before, or not even bringing home my homework to do it.  I was never quite sure was I was supposed to be doing.  And my grades…they just weren’t what I wanted.  It didn’t ever seem to get better.  At least some teachers seemed to like me and would be patient with me.  I found that I could do good on special reports and projects.  In fact, I liked things that I could create.  That part of school wasn’t so bad.

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Last summer I was sort of dreading sixth grade.  I was afraid I wouldn’t keep up cuz I’ve had so much trouble.  Well, sixth grade wasn’t going too good as usual, until my Mom heard about something called Central Auditory Processing Disorder.  She thought some of my problems were similar to CAPD.  She talked with two speech teachers and started researching for information about it.  I could tell she was hopeful and sort of excited about what she was learning.  We talked about it and I wanted to have my hearing checked out.  I went to see an audiologist.   It took two sessions of testing.  I got to do some listening-talking activities to see if I had an auditory processing problem and also an acuity test to see if I had hearing loss.

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Well, guess what!  I have CAPD.  The first thing I said to Mom was, “I’m not stupid after all.”  My problems come from a hearing disorder caused by sound confusion in my central nervous system.  All this time the trouble was that I haven’t been able to understand what people are saying because it takes time for my brain to sort out what it hears.  My brain can’t keep up with all the sounds I am hearing.  It is kind of a relief to know why it’s been so hard for me in school.  Now my teacher helps me by having me sit where I can see her and am not bothered by the other students.  She helps me get my assignments organized and helps me get my writing done.  At home my parents are careful to keep the room quiet when I’m doing my school work.  I practice speech sounds with my Mom and see a speech pathologist to help train my ear so that I can develop my ear muscles since they are still growing.  It’s so much better now and I’m even starting to do well in school.  Isn’t that great!

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This story is written to inform children and the educational community of the existence of Central Auditory Processing Disorder.  The thoughts provided in this story come directly from the personal experiences of my son during his years in elementary school.  He is a junior in high school now and continues to learn ways to compensate for the challenges of CAPD.   
As his parent, I was often frustrated and upset by what was going on with him as I saw him becoming more removed from the happy child he was at one time while becoming negatively affected by something he and we could not discern.  At the time I did feel that his struggles were related to his hearing but acuity testing negated this assumption.  After the audiologist confirmed a CAPD diagnosis my son was able to accept and understand what was affecting his lack of ability to do well in school.  

Immediately it was as if a cloud had lifted from him.   He was noticeably happier.  Now he knew and it made all the difference.  Through consulting with the audiologist and his teachers we have been able to come up with strategies to help assist him in gaining a good education without being outside the general education venue.   
It is my hope that educators will look beyond the obvious when children are struggling to learn.  There is always the chance that physical factors may be at play and this possibility should not be overlooked.
In addition, I am hopeful that other individuals who suffer from CAPD will recognize themselves in the message of this book and will find a solution for the frustrations they are experiencing.  It makes life all the sweeter.

A list of CAPD characteristics is available from the author.

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