The formative years – Dyslexia

Born in Boston in September 1951, the second child, of a WWII veteran and his wife.

I was a timid child. I don’t know why. Was I born this way or did I experience something that made me this way, perhaps it was all of the above? Three months after I was born, I developed whooping cough. The only treatment back then was fresh air, as antibiotics weren’t yet developed. In mid December, I was wrapped up in blankets, and placed next to an open window 24/7. It had to be dang cold, regardless of the blankets. Mom was sure I’d die. Obviously I didn’t, as this writing is a testament to that. But did I almost die? Did I have a near death experience? Did this make me fearful that life was not a safe place? Cause I surely felt this way about life. Mom became my safe place. She was the person who cared for me, when I was deathly ill or in need of anything.

Do you ever wonder what your earliest years were like, and how the experiences you have had, developed your character and personality? I do. As I got a little older, I began to see the effects of events on me. More so because I wasn’t living like everybody else around me.

The School Years

I started school early, because if you turned six in September, you attended school that year. I’d have done better in school if I was a little more mature, but I doubt it would have stopped the events that came to pass.

At twelve the public schools told me parents that I was retarded and would not be allowed to attend junior high school. I knew what retarded meant and I was pretty humiliated by this. The threat of going to “the class for the retarded” was terrifying. It was a small class, of kids who would lined up, holding hands, to walk down the hall to go to lunch! Some wore helmets, others shuffled, rolling their heads around. They were isolated from the mainstream kids. Thinking this was my future, well, you can only imagine my angst.

Mom wrote the superintendent of the School System, noting that no testing had been completed! It was simply a belief that I was retarded. I learned later, that many teachers felt that I was not comprehending my lessons and this was true. As there were things I just didn’t get. Like sentence structure, spelling, nouns, verbs, commas. It all baffled me. I’d been in the slowest reading groups from early on and even my parent had accepted that – I was slow. But retarded kind of threw them.

The school psychologist was sent to do some testing on me and my two brothers, at our home. It was kinda fun! The tests were all verbal, with me thinking that the questions were ridiculously easy. The answers seemed obvious. My final memory was overhearing the psychologist telling mom that “Carol is not retarded. She says, she can’t read.” I’d made it through nearly 6 years of school without being able to read! How? The testing indicated that all three of us kids were pretty smart. We all scored above average with me having superior + intelligence! Ok, if this isn’t a dichotomy, what is? How does a twelve year old, wrap their head around this?

Now the torture began! First, it was off to Children’s Hospital for neurological, psychological, and medical testing. This wasn’t so bad, as I had my first serious crush on the doctor in charge! Too funny. But these guys came back with a diagnosis of dyslexia, which meant nothing to me!

“Dyslexia is a learning disorder that involves difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words (decoding). “Also called a reading disability, dyslexia is a result of individual differences in areas of the brain that process language.” 

“Societal interest in people with reading difficulties probably began in 1878 with Adolph Kussmaul, a German neurologist. He had a special interest in adults with reading problems who also had neurological impairment. He noticed that several of his patients could not read properly and regularly used words in the wrong order.  He introduced the term ‘word blindness’ to describe their difficulties. In 1887, a German ophthalmologist, Rudolf Berlin, was the first to use the word ‘dyslexia’ in place of word blindness. The condition was described as ‘dyslexia’, from the Greek meaning ‘difficulty with words’. The first case of developmental dyslexia was reported by Pringle-Morgan in the British Medical Journal on the 7th in November 1896. Pringle-Morgan, a general practitioner, and Hinshelwood, an ophthalmologist also writing at the turn of the century, speculated that such difficulties with reading and writing were due to “congenital word blindness,” and for many years the dominant view was that dyslexia was caused by visual processing deficiencies.  In 1925, an American neurologist, Dr. Samuel T. Orton proposed the first theory of how specific reading difficulty arose. He placed a great emphasis on the dominance of one side of the brain. Teaching strategies he developed during his research, are still in use today.”  ( 

You might think we would have come a lot further in working with this brain disorder since the late 1800’s. Sadly, this isn’t true, as best I can tell! As my dad’s sister reported, not so long ago, that her granddaughter was diagnosed with dyslexia and her teacher seemed not to understand her issues and was not providing support to her! Criticism for an uncontrollable reality is the worst thing someone can do to a child or anyone really.

After all my years of experience, I suggest that Dyslexia may be more than just word blindness. Taking the statement from above stating, “The dominant view was that dyslexia was caused by visual processing deficiencies” in the brain. If it causes a form of word blindness, might it also cause other forms of visual blindness? Too often I am looking for some thing, and I look and look and look to see it. Stopping to scan a room inch by inch fully knowing it should be there. Finally, being able to see it, even though it was almost right in front of my face!


I attended extra curricular classes at school, further adding to my embarrassment. I also went to after school classes and on weekends, which I simply hated. The effort was well placed but how can you make someone see what they can’t see? This is a brain visualization processing problem. It’s a brain dysfunction. Dyslexia is not curable. Whoever has it, has to figure out how to function in this world while having it. And I assure you, that you have to do this on your own, for the rest of your life. Dyslexia never goes away! There’s no pill, no program, no escaping your reality. I never wrote on the board for the rest because I can’t spell! I never read out loud in public, as not to humiliate myself. I made speeches, lead seminars, even was a magazine publisher, but tried desperately to hide looking stupid or being dyslexic. Not being able to read and write is a terrible handicap. It affects everything that you do…try reading a recipe…dialing a phone correctly, reading directions, a map, a chart, anything…!

As that school year came to an end, my folks excitedly shared that I was very, very lucky!  Out of over 1,000 applicants, I had been selected to attend Boston University PhD program that summer! Oh whoopee!  The program had PhD students, who were doing their thesis’ in special education!  I would have a one on one relationship with a PhD student, as they attempted to teach me how to read!  Now, does this sound like fun to you?  Right, and it didn’t sound like fun to me either!  A summer of schooling in Boston?   I lived in the burbs. This daily trip alone, caused me great anxiety. Mom took me to Boston via the train (40 minute ride) then we caught the subway to Park Street Station and then changed trains in Park Street Station to get to BU. She took me three times and then I was on my own for the rest of the summer. Early on, I would be wearing my breakfast on the party dress I wore to B.U. I acclimated over that summer, innately learning that I was on my own. I’d have to figure things out for myself for the rest of my life.

Special Note

In defense of my parents letting a little girl navigate Boston alone at twelve, well they grew up just outside Boston, so taking the trolleys was a common practice for them, as all children did in the 30’s. There’s a family story told that my dad used to drag around in his shoes, holding on to the back of a trolley in the winter for fun. I certainly didn’t inherit his sense of adventure. ,’)