Tuesday, May 21, 2019

A Mother’s Reflection

Living with CAPD
A mother’s reflections on herself and her twin boys

My 14-year-old son Kevin came home from school very distressed one day; he told me that everyone was going to die.  Two years ago Kevin and his twin brother Kieron were diagnosed with Central Auditory Processing Disorder (CAPD).  Children with this condition have a tendency to take what they hear literally.  On this occasion Kevin had been learning about global warming in school. Unfortunately, in her desire to stress the importance of protecting our planet, his teacher had made the threat of the world ending sound imminent to Kevin.

In that circumstance, I was able to put what Kevin had learned into a context by supporting what he had been taught in school, while also emphasizing the message of protecting the needs of future generations.  I told him that the world wasn’t going to end in his lifetime and, if we worked hard, the world would last for a very long time.  The relief on his face when I told him this revealed how scared he had been.  Kevin had spent the entire school day believing that everyone he knew and loved was going to die.

I have learned that even a simple joke can have devastating consequences.  This was illustrated to me when, prior to their CAPD being diagnosed, I jokingly told Kieron and Kevin that we were aliens and that our house was really a spaceship.  It was when we returned home and both boys started screaming that I realised that they had taken my joke literally.  It took me nearly two hours to convince them that I had been joking.  It was this incident that demonstrated to me just how vulnerable my children are, as their sense of reality and security can be taken away from them in an instant.  Thankfully, these events now occur much less frequently.  As Kieron and Kevin have grown older their ability to contextualise what they hear or to detect when someone is joking has also grown.

Prior to Kieron and Kevin being diagnosed with CAPD, teachers attributed their learning difficulties to low intelligence.  However, this theory was disproved when the boys were 10 and a half and Kevin scored four years ahead of his chronological age in a non-verbal reasoning test.  Kieron scored at an age appropriate level, however he probably would have scored higher if he had not rushed the test. Instead, their main difficulties in learning are due to having poor literacy skills. Children with CAPD have difficulty learning to read phonetically, as they find it hard to distinguish between the different phonic sounds.  My sons would have less severe learning difficulties had an earlier diagnosis been made and alternative teaching methods could have been implemented.  Unfortunately, the reading recovery schemes used to help them in school weren’t successful, as they were all phonic based.

Many children with CAPD are strong in subjects that require using visual rather than language skills. Both Kieron and Kevin displayed an exceptional talent for art from an early age.  Their attention to detail is so accurate that when they copy pictures they look as if they have been traced.  Their use of perspective is also advanced for their age.  Both of my sons want to use their talent in art to become cartoonists when they are older.

Children with CAPD can experience learning difficulties even when they are given work to do that is well within their capabilities.  One of Kevin’s strongest subjects is Technical Design.  However, one piece of his TD homework proved beyond his comprehension.  Kevin was asked to design a plan showing the materials he would use to build a moneybox.  However, he had problems processing the word ‘materials.’  On all previous occasions, Kevin has heard the word ‘materials’ used to refer to actual materials that items were made from.  He was unable to comprehend that on this occasion, the word ‘materials’ was being used in a different context.  When his teacher rephrased the instructions, Kevin completed the assignment with no difficulty at all.

Fortunately, I was able to relate to my sons’ experiences because, as a child, I experienced similar difficulties.  I was diagnosed with Central Auditory Processing Disorder 4 years ago.  My sons inherited CAPD from me.  I found education easier than Kieron and Kevin, mainly due to the fact that I have a photographic memory.  This meant that I only had to be told what a word said once and I knew it.  I built up a large vocabulary by sight and learned to read phonetically after that.  I was also aided by the fact that I adored the mechanics of the English language.  I was fascinated by the realization that from so few letters so many words could be made and that each one had its own meaning.  In my mind, words were both magical and powerful, as they can affect the emotions of the listener or reader.  At six years old, instead of being read bedtime stories, I would take a dictionary to bed with me.

My Mother was proud of the fact that I had some basic reading and writing skills prior to my starting school.  However, after I had been at school a few months she noticed a strange pattern in my behaviour.  I had been able to write my name ‘Michaela’ for months, when for no apparent reason, I began to completely miss out the ‘M’ in my name.  When asked why I was doing so, I replied that the letter ‘M’ didn’t exist.  No amount of persuasion on her part could convince me that she was right and that I was wrong.  I started having learning difficulties in school when I wouldn’t use the letter ‘M’ in any context.  Initially, it was felt that I was seeking attention, so no action was taken to try and correct my behaviour.  However, when I still wouldn’t use the letter ‘M’ for some weeks, I was asked by my teacher to explain my reasons.  I explained that she didn’t say the letter ‘M’ when she sang the alphabet song.  Initially, my teacher insisted that I was wrong and sang me the song twice through to back her argument.  I still couldn’t hear her say the ‘M’ and told her so.  It was after she sang the song for a third time and focused in on the sound of her own voice, that she realised what she was doing. She sang the ‘L, M, N, O, P’ part of the song so fast that the letters ran into each other and the letter ‘M’ was lost to me.  When she carefully enunciated each letter, I experienced no further difficulties. Although my behaviour was strange, it was entirely logical.  I had been told that all the letters in the English language were in the alphabet, so if a letter wasn’t in the alphabet song, how could it exist?

Despite this earlier difficulty, I went on to excel in English.  At seven years old I was able to answer all my reading comprehension questions without a single mistake.  I was also able to get through the exercises very quickly.  This was due to the fact that I took it literally when my teacher told the class that all the answers could be found in the story.  I also picked up very quickly that many of the words in the questions could be used in the answers.  My problems began when my teacher accused me of cheating due to the fact that my answers were word perfect to those in the back of the textbook.  She tried different strategies to attempt to prove this, ranging from giving me a text-book with the answer pages cut out to moving me to a desk isolated from the rest of the class.  I still got all my answers right, although I took no pleasure in doing so.  I thought that because cheating is bad my teacher must believe that I was a bad person.

It was only when I looked through my class-mates exercise books in an effort to understand why my teacher wouldn’t believe that I wasn’t cheating, that I first realised how different my way of thinking was from theirs.  I wasn’t able to comprehend how the other children could answer a question incorrectly when the answer was clearly written in the text book, or how they could make spelling mistakes when all they had to do was copy what was written down in front of them.  I felt isolated from my peer-group and, in an effort to regain my sense of belonging, I started to deliberately answer questions incorrectly and to put errors into my work.  My teacher started being nice to me again and I attributed this to her liking the fact that I was the same as everyone else.

Having a photographic memory repeatedly caused me problems in senior school.  My ability to unwittingly memorize entire paragraphs of text meant that when writing summaries or doing class projects, sections of my work were the same as in the book I was using.  No one believed me when I protested my innocence.  At my school, it was thought that the best way of stamping out deviant behaviour was to publicly humiliate the student concerned.  I was repeatedly asked to stand up in class while my teacher told the class that I plagiarised because I wanted to appear better than everyone else. This led to years of bullying; when I complained to teachers, I was told that I brought it on myself.

My struggles did not end with English class.  I found that in Mathematics that I often couldn’t follow my teachers’ instructions.  My strategy to overcome this was to look at a couple of answers in the back of the textbook and work backwards.  By doing this I would develop my own methods to answering the questions.  I often found that I gained a more comprehensive knowledge of the subject matter learning in this fashion.  It was thought by one teacher that I was cheating and I was forbidden from looking in the back of the textbook.  I gave up doing any Math at all and left school with a low grade in this subject.  Later, as an adult in college, I was taught Mathematics by a mathematician who worked with me by either rephrasing her instructions if I experienced difficulties or demonstrating alternate methods of solving a problem.  I was able to reach an A-level standard in a few months.

When I was at school I became afraid of learning, because I wasn’t able to learn in the same way as my peers, no matter how hard I tried.  My way of learning seemed to get me punished so often that even when I had teachers that recognised my true potential, I would deliberately work to avoid advancing to a higher level.  I much preferred to be in a situation that allowed me to remain in the background. Only now can look back on the child I was with fondness.  I now value my differences and can admire the tenacity of spirit that helped me to overcome the difficulties they caused.  I understand that all of us are unique and deserve understanding and respect.  I can now take pride in my accomplishments, rather than focus on what I might have achieved, had things been different.  I believe what makes the human race special isn’t our similarities but our differences; it is just that some of us are more different than others.