Letter to the Editor: Living with Auditory Processing Disorder
August 29, 2022
The following is a first person account of living with an invisible disability. In this case, Dean Reece also has a visible disability – cerebral palsy. He explains how that complicated his education.
Living with Auditory Processing Disorder (APD) is like living in a world that wasn’t made for you. But, it’s not like the struggles a person in a wheelchair faces accessing poorly designed spaces. Auditory Processing Disorder often presents in individuals who are perceived to be very bright and thus have no need for adaptive communication strategies at all. (Read When sounds collide: what auditory processing disorder is – and isn’t)
Individuals who live with APD are often thought of as lazy, for lack of a better word. It’s a disorder not often discovered until years or decades later when a person seeks treatment for something else unrelated to the disorder. Unfortunately only an elite few know what to look for.
Here is my account of living with APD. Just remember that my social presentation is quite a bit different than others because of my use of a wheelchair.
When I was very young, my father noticed I was significantly cross-eyed. I also remember, around this same time, doctors and some of my teachers thought I might have a seizure disorder. I went to the fancy hospital in Omaha, Nebraska where an electroencephalograph (EEG) was performed over a three-day period to check for the occurrence of abnormal activity. But the tests came back normal. They determined I “was just not paying attention.”
So let 30 years of misunderstanding begin. In elementary school I was prescribed the Attention Deficit Disorder medication Ritalin, but it had little effect in my opinion. There were many times when teachers would pull me out of class because, in their view, I appeared to be purposefully zoning out and not paying attention.
Throughout most of elementary school it was anything but pleasant for me. My father’s approach to helping me with homework was largely the same as his response to my physical disability: “Help yourself!”
Now, I just want to tell you straight up, my entire educational experience was tough, though third and fourth grade were exceptionally hard on an emotional level.
Throughout third grade, I remember my teacher would speak to me in an aggressive but firm tone when my behavior was off task or disrespectful. Unfortunately, no one was able to connect the dots and realize many of the issues I was experiencing were due to undiagnosed and untreated auditory processing problems.
By the time fourth grade rolled around, the adults around me did not adjust their communication styles toward me. What transpired was anything but a positive school year for me. Ten pink slips! Yes, you heard that right, ten slips. I was the only student in a wheelchair and the student with the most disciplinary write-ups. How was that possible? Was I really the worst behaved individual in the place? No!
I now know I had anger expression problems because of a listening disorder and a more obvious disability. Neither I nor anyone else completely understood how the conditions played a role in my communication challenges. In fact the two conditions I live with are not what they are just assumed to be.
By the time 5th grade rolled around, I was much calmer. I only had two disciplinary referrals that year but neither were serious.
When I got into 6th grade, I was in an upbeat mood all the time. The aide who was assigned to me would quiz me all time about upcoming assignments and tests. This continued into 7th grade until the end of 1999 when my father’s employment relocated us to Mount Vernon, Illinois.
Once we arrived here, not only was my apartment situation a disaster but so too was my brief stint in the second half of 7th grade. My aide at the time behaved more like an immature juvenile rather than a mature staff member. It also seemed like any form of disability in general was nearly impossible for any school staff to understand.
On a weekly basis my father would have to explain to staff that I could read signs on the wall just not long paragraphs in textbooks because my eyes would get too tired from muscle strain. In Minnesota, I was an A/B student. In Mount Vernon, I was a C/F student.
What followed from Mount Vernon was a year long of full special education with coursework that was way below my intelligence level. There were also a lot of other students with behavior issues I just could not understand. During the last quarter of the school year, I was allowed to take a regular health education course.
The problem here was that a few assignments were late. My teacher’s policy was if an assignment was more than a day or two late it was automatically 30% of the total grade. I also had to stay after school just a few times for missing homework, which my teacher deemed laziness, but that I knew was yet again an auditory processing problem.
When I entered high school, it was an experience like no other to me. My freshman year, I was once again in an upbeat mood all the time. My first aide had a challenging time wanting to correct incorrect responses. He was a very reassuring and calming comfort to me during the most difficult time of my life.
By the time my sophomore year rolled around, it had a polar opposite effect on my mood. At my high school, the food nutrition science teacher was one of my all-time favorites. Despite that, she had a very strict late homework policy. She would assign four or five big assignments every night. No matter how hard I tried, I just could not keep up. I was moved to nearly full special education once again. I thought for sure I had bipolar disorder. I didn’t!
At this time however, I had more going on than just keeping up with homework. My home life was absolutely miserable. This was in large part due to both my father and my step-mother not understanding characteristics of my behavior correctly. Events were so bad at one point I had two interventions with the Department of Children and Family Services. Both times, DCFS could find no reason to remove me from the home. However, after the first one, our caseworker informed my family about what is now commonly known as Neuro Restorative. My family was ecstatic about me receiving extensive physical and occupational therapy in hopes of increasing my mobility independence.
What they did not realize when they signed up, is going to a place like Neuro Restorative is not like going to a restaurant where you have a choice of veggies or french fries. The agency looks at your whole person. This includes everything from speech and language, psychological, behavioral and educational and employment assessments in addition to physical and occupational therapy. When the speech language pathologist did her assessment on me she diagnosed me as being slow processing.
Even with a diagnosis, it had little effect on my school’s and my family’s response towards me. In fact, it was made worse because Neuro Restorative made no plans for aftercare for speech therapy as they did for physical and occupational therapy. The speech therapist just assumed I would get speech therapy at school, but I never did.
The only thing that did happen was a meeting between Neuro Restorative and my step-mother in an attempt to make my school experience as much like Neuro Restorative as possible. It was actually far different.
I will just tell you the public school system in the United States has to provide all the services you find at Neuro Restorative as a matter of law. The catch here is they cannot be performed at the same level as a rehab center. They can only be performed to the extent they benefit your school education. My family did not like that.
When therapy services are administered in the school school system, it is usually done at the expense of one or multiple class times. Therapists are more often than not seen as an enemy to the educational process from the teachers’ perspective, because it’s just one more thing they have to deal with. This is especially so for speech and occupational therapy because the need for these services isn’t so obvious to the untrained eye.
Unfortunately for me, I desperately needed speech therapy. When teachers often see that a student like myself has no speaking difficulties the perceived need for speech therapy intervention goes completely out the window. The school turned to artificial means of getting me through the high school experience that are not therapeutic in the long term.
My aides would often finish work when I could not. The teachers would intervene and tell them to stop only a handful of times. I was not the only student treated in this way. It honestly just has to do with how well the teacher or aide understands the issues on the student’s plate.
While K-12 accessibility is a matter of law, passing college is not. I enrolled at SIU immediately following my high school graduation at father’s persistence. My struggles with cerebral palsy were just a small fraction of what I had to deal with to obtain my bachelor’s degree.
Large volumes of reading were the biggest obstacle here. On the bright side, though, I didn’t have to worry about attendants being on my case constantly about getting work done. Large volumes were problematic for three main reasons. First, my brain does not process visual information quickly. Second, because Disability Support Services does not provide homework helpers, outside of class I had to do all my reading through electronic text reading software. That strategy is great until the disability office doesn’t have the book you need for a particular class in its database. When that happens the disability office solution is to take the binding off the book and scan the pages manually so that a screen reader will pick it up.
When I would get these books back words would be read in syllables or just gibberish that could not make sense to any human. In order to compensate for this problem, I had to hire tutors from outside of class to read and slowly type out my papers for me. Sometimes I would get free volunteers if a student needed volunteer hours working with a student or a person with a disability, but other than that I was on my own.
Even with volunteers, it wasn’t exactly a free ride for me. Many of them thought I just needed help with typing. They did not realize all the puzzle pieces that have to fit in just the right way in order for me to complete a paper successfully.
I would often get labeled as unintelligent by these people or be accused of purposefully cheating. Even if I dictated a sentence to an assistant, their entire demeanor would tell me I was automatically wrong.
A lot of times, I would get asked (and I still do) if I use speech dictation software. And the answer is no. First, when I speak, my vocal patterns are too different to train the program effectively. Secondly, my auditory processing component means everything before I get to the actual typing of the paper is the most challenging part for me.
Being compared to others in wheelchairs is something that happens to me almost every time I turn around. This is especially so when a teacher or counselor believes a person they know or work with has a more severe form of impairment than I do and in turn works harder than I do. My response to them is usually pure silence, out of respect, but I’m really full of rage when this occurs. The only time it is ever appropriate to compare people in wheelchairs is if the functional independence goals are almost exactly the same.
Sometimes one just needs to realize another peer in the exact same situation may not exist. What does exist, however, is the ability to make choices about how each of us respond to the utmost challenges of a given situation. Sometimes truly the best gift you can give to someone is the admission of “I don’t know.” I can guarantee you this APD is something you either know or you don’t. I will also promise you this: misinterpreting APD for laziness is something that will be remembered for a lifetime.
From what I’ve been able to gather over the past 30 years or so is that our entire education system is genius at figuring out a student’s intelligence level. What we have not yet even begun to talk about yet is what happens when a student has intelligence that can’t be accessed.
Specialized educational alternatives can be the best option for some students and adults. Staff in these areas know how to read situations for exactly what they are and how to address instances of inexcusable behavior with compassion rather than overbearance. Though K-12 is standard, Neuro Restorative-like programs are not. It would be wise if this could be reevaluated in some way.
I know some of you are going to strongly disagree with me when I tell you I think Carbondale is one of the worst places in the United States a person like myself could be. I say this because, in this community, there’s been a long time reputation in regards to people in wheelchairs and other profound disabilities.
The truth is Carbondale just has a larger sample size of people with obvious disabilities so people just assume they know more than they really do. Maybe someone’s hidden disability is not APD. However, being activity aware of symptoms and specific behavioral characteristics is the only efficient way of getting to the truth. You and I have a clear understanding of what the truth is – that’s the only way the Carbondale community and society as a whole will become a more peaceful and approachable place.