Hello all.

I would like to thank everyone for visiting our web site and helping to support the education and development of children with Optic Nerve Hypoplasia and the families that help nurture and raise us. If you have a suggestion for a topic that you believe I should cover on this blog, please do not hesitate to reach out to me through this web site.

I would like to dedicate this blog to an issue that has challenged and confounded parents and professionals alike in their efforts to educate many of our children: Braille literacy.

According to data published by the American Printing House for the Blind, only 7.8% of Blind students in the United States receiving educational materials in alternative formats are Braille readers, and nearly 70% of Blind adults are unemployed. However, the vast majority of those who have attained employment are Braille readers, and many work in professional and technical fields requiring some level of college or post-secondary education. Many successful people with congenital blindness or visual impairment began reading Braille at an age comparable to their sighted peers reading print. Most successful, competent Braille readers can read a Braille passage with the same fluency, accuracy, and comprehension as print readers with average or above average sight. In the best training programs for the Blind in the United States, reading speed of 300 to 400 words per minute is typical--and expected--of many congenitally blind students.

However, many children with ONH--including me--have experienced real difficulty in learning and processing the Braille code. In May 2018, I published an article in 'Paths to Literacy", a comprehensive blog on strategies to develop literacy in Blind children hosted by The Perkins school for the blind, on my experiences learning Braille. I want to elaborate here on my earlier article--particularly for anyone in a position to conduct further research on this topic.

My earliest memories growing up were of music and musical cords. I learned to speak when I was 3, but from what I remember of my very early childhood, I developed a concept of tonality and musical cords much earlier.

I remember playing with my dad's empty beer cans when I was about two and a half and marveling at the tones they made. By the time I was three and had begun talking in full sentences, I also had learned to count and developed a concept of time and the 24-hour clock. Throughout my childhood, I loved to tell time. Indeed, I needed clocks around so I could feel secure.

I had also developed a system in which each hour of the day had a musical tone associated with it. For example, I assigned A-flat to 12:00, while I associated 8:00 with the key of E. These tonal assignments were very important to me--particularly in preschool and kindergarten. I would also develop obsessive and all-encompassing interests in the sounds of cars and telephone switching equipment, which I discuss in more detail on my YouTube channel and other writings.

As I mentioned in my earlier article, however, nearly all fine motor skills were difficult to impossible for me. I was extremely tactilely defensive and resistant to all efforts by my teachers and family members to teach me these skills. Braille in particular was a nightmare.

I offer a description of the Braille code in my earlier article, but for those unfamiliar with what Braille is and how Blind people use it, a good summary is available from this page from the web site of the American Foundation for the Blind.

From my perspective as a person with ONH and sensory processing difficulties, many teachers of the blind fail to appreciate the fact that Braille is a primarily spatial medium. The Braille alphabet--as well as numbers, punctuation marks and a variety of mathematical symbols used in Unified English Braille, the code currently used in all English-speaking countries, consists of different configurations of six dots. These configurations--referred to as cells--can denote letters, punctuation, other mathematical symbols, and, in standard contracted Braille, whole words. In short, standard literary Braille is its own alphabet--with many additional symbols and contractions that a Blind person must master. Each dot on a Braille cell is signified with the numbers 1-6--with each Braille sign having its own configuration. Hence, the letter c is represented by dots 1 and 4, while the letter m is represented with dots 1, 3, and 4.

While many typically developed Blind children master Braille with ease, I struggled for a number of reasons. First, Braille has a rough texture which was difficult for me to process. My ability to process sensory information as a child was extremely sluggish, and I had low muscle tone. I also had real difficulty translating the spatial configuration of the Braille cells into dot configurations, which made recognizing letters an arduous chore at best and nearly impossible at worst. Worst of all, however, Braille gave me no auditory feedback; it didn't beep like a telephone call being completed, chime like a clock or make musical notes, so I wasn't able to associate a musical note with a dot or letter on a Braille page.

This initially made reading Braille an impossible task. Writing Braille was no better.

I would eventually begin reading print with a closed-circuit television (CCTV) when I was in the first grade. At that time, my family and teachers agreed that I was showing a preference for print and was better able to recognize print letters than Braille.

This was true to a point, but I still remember struggling with print letter and word recognition until about halfway through second grade. Reading print was also very arduous for me, and looking at a CCTV for extended periods often lead to headaches and fatigue. In about the sixth grade, I began using recorded text books from Recordings for the Blind, now Learning Ally. This allowed me to read materials more efficiently and without eye strain or headaches, but I believe it fostered a sense of dependents on readers--especially initially. I had some difficulty with spelling, because using a reader generally does not provide access to how a word is spelled, as Braille does. The same goes for punctuation.

I would receive years of occupational therapy and orientation and mobility instruction at school and attend the summer youth program at the Clovernook Center for the Blind and Visually Impaired in Cincinnati--where I learned most of the daily living skills I use to this day.

I still struggled mightily with fine motor skills while I was at Clovernook, and the staff there recommended after I completed my third summer there that I be evaluated for Sensory Integration Dysfunction. I had just learned how to tie my shoes the week after finishing the program that summer. Once I learned to tie, a lot of other fine motor skills fell into place within weeks.

I figured out on my own how to plug in appliances, and skills like using eating utensils became somewhat easier for me. I felt as if I could process how the world of spatial relations worked and use the knowledge, I had gained in the many unsuccessful attempts to develop my fine motor skills to suddenly be able to perform them successfully. It is difficult for me to explain, but it felt as if I had downloaded software that allowed me to learn new skills and develop methods to teach myself others, which I came to refer to as "skill postulates." My ability to plug in an appliance, use a paper clip and eat with a knife and fork came out of such "skill postulates".

The summer after my freshman year of high school, I decided that I wanted to make another shot at learning Braille. I reached out to a councilor from the Ohio Bureau of Services for the Visually Impaired specializing in working with transition aged youth, who referred me for a Braille and assistive technology skills evaluation. I found that I could read the first ten letters of the Braille alphabet with relative ease, and I learned the alphabet in one day. I noticed that many of the memories from my initial attempt to learn Braille in preschool and kindergarten came back to me, aiding my progress significantly. It was as if I still had the earlier representations of many Braille signs from my childhood intact, but newly downloaded software for fine motor skills and spatial relations allowed me to use them to process and assimilate new materials. I still had some difficulty deciphering words at that time, but this became easier with practice. Within about six weeks, I could read most uncontracted Braille, but my pace was still very slow.

I would go on to complete high school and college, and one more unsuccessful attempt to learn contracted literary Braille would follow. In the Summer of 1999, a colleague who is a teacher of the blind and visually impaired referred me to the Illinois Braille Series, a classic three-volume set of materials for adults. I completed the series in about two months, and as they say, "The Rest is history".

Now, I read Braille magazines and reference materials from National Braille Press and other sources occasionally, but my speed is still not up to my liking. (It certainly is not the 300 to 400 minutes of some of my peers and colleagues). I also feel the need to take little sensory breaks from reading Braille about every 20 minutes or so, as I do with print. This helps with comprehension, which I will admit is still not the best.

so, what can be learned from my experiences learning Braille? I believe that many children with ONH require different strategies to learn and assimilate the Braille code than other Blind children. My own experience and that of some other children with ONH bears this out.

Many children with ONH have real difficulty processing information--particularly when it is related to how objects are arranged spatially. Their perceptions are often inaccurate, and their processing time is very slow. Any sensory information can take much longer to process for a child with ONH than another Blind child without sensory processing difficulties.

For a Blind child with ONH and sensory processing difficulties, reading a word can involve mapping each cell's dot configuration individually and translating it into its corresponding letter or sign. The process is repeated for each cell in a given word. This can be very time consuming for some children with ONH who are tactilely defensive; the child may, for example, take a minute or more to process the dots 1-4 as the lower-case letter "c". It can take still longer to perceive the next cell on the Braille line as a dot 1, the letter "a", followed by the dots 2-3-4-5, the letter "t" and perceiving, in another process, that the three letters together form the word "cat." This is a process that most blind Braille readers can perform automatically, but some children with ONH struggle mightily with this without other interventions. it is as if the Thalamus, the part of the brain responsible for taking in tactile information about a Braille letter, and the visual and cerebral cortex that interpret it are connected by a very slow radio connection, and sometimes, that connection fails to work at all. This results in anxiety, frustration, and ultimately, defensiveness.

Scientists and the public at large have long theorized that the brain naturally compensates and adapts to disability, and the emerging field of neuroplasticity has striven to understand how this occurs through neurological imaging studies. The field of neuroplasticity seeks to answer questions concerning ways in which the brain adapts to changes in the environment, development, disability or damage. Various studies and anecdotal reports have demonstrated that in people with ocular blindness, the visual cortex adapts to perform nonvisual functions. this allows the person who is Blind or visually impaired to process Braille in the same way that a sighted person processes print. The ability of the visual cortex to perform nonvisual tasks is also associated with some other enhanced abilities in people with ocular blindness, including smell, auditory localization, and verbal recall.

Most blind Braille readers without additional learning disabilities do not need to process words letter by letter; they read paragraph by paragraph. Most proficient Blind people I know read Braille with both hands, using their index and two middle fingers of their right hand to read each line of text on a page. They use their left hand to track the position of their right hand on a page and help them efficiently locate the beginning of the text on the next line. This enables the competent Braille reader to fluently read and process lines of text, maximizing their speed and comprehension.

I personally use my left hand to track my right hand's position to locate the text on the next line, but I still only feel comfortable using my right index finger to read text--so my reading efficiency isn't comparable to a lot of my colleagues who learned to read Braille early in childhood. I would estimate my reading speed at between 40 and 70 words per minute. This is sufficient for some tasks, but certainly not up to my liking.

Many children with ONH whose families I have worked with are unable to identify Braille letters with accuracy. They may transpose letters and show difficulty tracking and discriminating lines on a page. Many--including some with visual acuity of 20/ 400 or less--become so frustrated that they give up on Braille entirely and resort to using the little vision they have to read print, as I did. Clearly, these children can benefit from Braille instruction that addresses their limited sensory processing abilities and resulting tactile defensiveness.

This leads to two central questions that I believe we have yet to address in our study of children with ONH and Braille literacy. First, is it possible for a Blind child to have a specific learning disability in Braille in the same way that a sighted child can have a specific learning disability in print? In other words, can the process of neuroplasticity in many children with ocular blindness go awry and fail to develop? This would contribute to reading difficulties in some Blind children unrelated to the blindness per se, but connected to the etiology of the child's blindness. Second, what intervention strategies can help children with sensory processing difficulties (from ONH or other factors) overcome these difficulties at an earlier age? Could interventions like music therapy make learning Braille easier and facilitate literacy? Research in the emerging field of neuroplasticity may help answer these questions.

Dr. Lotfi Merabet, Neurologist and Ophthalmologist at the Massachusetts Eye, and Ear Infirmary, is currently studying neuroplasticity and development of children with ocular blindness compared to those with Cortical Vision Impairment (CVI). Cortical Vision Impairment refers to a visual impairment that stems from a neurological cause--such as lack of oxygen during birth.

He has found that areas of the visual cortex responsible for spatial location and object identification were less active in children with CVI than same-aged peers with ocular blindness and typically sighted controls. They also showed less connectivity among various parts of the brain which were associated with difficulties in identifying objects in crowded motion and accurately perceiving the location of objects in space. These areas include the Thalamus, which can also be underdeveloped in children with ONH.

His findings show that high intensity, immersive interventions that promote sensory motor integration and emphasize repetition and novel activities--such as rigorous instruction in Braille and other skills of Blindness--may be effective in developing the perceptual abilities of children with CVI. This also can have an impact on social cognition and other less tangible
outcomes for these children.

Though ONH is considered an ocular disorder, it is becoming increasingly apparent that the underlying process that leads to the development of ONH also impacts midline brain structures such as the Thalamus and Hypothalamus that can also be impacted in CVI. Spatial awareness, sensory processing and object perception are particular weaknesses for many children with both CVI and ONH.

In May 2018 after learning of Dr. Merabet's research, I reached out to him concerning the prospect of expanding his research to children with ONH. Our conversation was very cordial, and he expressed agreement that his neuroplasticity research should be undertaken with children and adults with ONH who can tolerate participation in a neuroimaging study. However, ultimately, conducting such a study on a cohort of children with ONH will require significant funding, and no government agency or private source has expressed interest in carrying out such a study.

I believe that research into neuroplasticity in ONH will shed new light into the mechanisms behind some of our behavioral characteristics, developmental trajectory and difficulty many of us experience learning Braille and other basic skills that require spatial processing and sensorimotor planning. I ask anyone reading this blog with the proper credentials and contacts to consider conducting or funding this research on behalf of our families. Such research will contribute to our overall understanding of the development of children with ONH and other disabilities and represent an investment in our future.

Sincerely,

Christopher Sabine
President
ONH Consulting, LLC