[Ohio-Talk] Great work.

[Cheryl Fields]

Chris, this is a great article! Continue the great work that you are doing. Much success to you! Cheryl Fields

Sent from my iPhone

> On Sep 28, 2019, at 10:15 AM, Christopher Sabine via Ohio-Talk <ohio-talk at nfbnet.org> wrote:
> 
> Richard.
> 
> Thank you so much. I really greatly appreciate it. BTW- I still am a member
> of the Affiliate <lol>. I've made my reservations for Convention and hope to
> see you in Columbus. I hope this article starts a conversation about how we
> can serve Blind people who also have additional disabilities. There is
> really a whole lot that needs to be done in this area-I think.
> 
> Very Best,
> 
> Chris
> 
> _____________________________________________
> From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Richard Payne
> via Ohio-Talk
> Sent: Saturday, September 28, 2019 9:42 AM
> To: 'NFB of Ohio Announcement and Discussion List' <ohio-talk at nfbnet.org>
> Cc: Richard Payne <rchpay7 at gmail.com>
> Subject: [Ohio-Talk] Great work.
> 
> 
> Christopher , this was great work and it was my pleasure to read knowing
> that you were a member of our affiliate.
> 
> Optic Nerve Hypoplasia: Unraveling the Mysteries
> by Christopher Sabine
> 
> 
> From the Editor: In the National Federation of the Blind, we seldom focus on
> specific conditions that lead to blindness. What truly matters is the fact
> that a person's vision is low enough to require nonvisual methods for
> carrying out tasks that typically are performed with the help of sight. In
> some instances, however, a particular diagnosis may involve a constellation
> of disabilities in addition to blindness. Such disabilities can pose some
> unique challenges. In this article Christopher Sabine looks at one of the
> most prevalent causes of blindness in children in the U.S., optic nerve
> hypoplasia, or ONH. Chris has been a member of the NFB of Ohio since 2014,
> and he serves as secretary of the Cincinnati Chapter.
> As a blind adult and a member of the National Federation of the Blind, I am
> amazed by the diversity within our organization. We represent a wide variety
> of cultures, and we come from all walks of life. We have a tremendous
> capacity to absorb new ideas and perspectives.  
> The Federation promotes such skills of blindness as Braille, assistive
> technology, and independent travel with the long white cane. In the
> Federation we also encourage a set of daily living skills and social skills
> necessary for blind children to become successful, productive adults. We
> recognize that a confident, positive attitude, willingness to take risks,
> and the ability to adapt to change are all essential for a blind child to
> grow into a successful, competent blind adult. 
> Blind children are as unique, wonderful, and complicated as any other
> children. However, I believe that some blind children experience
> developmental challenges that are not related to their blindness per se, but
> are a part of the underlying condition of which blindness is a
> characteristic. Some children who receive (or do not receive) blindness
> instruction in the educational system also have autism, behavioral
> disorders, chronic health conditions, or developmental disabilities. These
> additional challenges can have a huge impact on the ability of these
> children to learn the skills of blindness and thrive in the general
> educational environment. I believe it is vital that we do all that is
> possible to enable these children to learn the values and skills they need
> in order to live the lives they want. As an example, I would like to share a
> bit about my own life. 
> I was born with optic nerve hypoplasia (ONH), which is the underdevelopment
> of one or both optic nerves during pregnancy. Once considered a rare
> disorder, ONH is now one of the leading causes of childhood blindness in the
> United States and some other Western countries. Optic nerve hypoplasia is
> typically bilateral, affecting both eyes, and this is true in my case. The
> condition can also occur in one eye, known as unilateral ONH. 
> The underlying process that leads to the birth of a child with ONH also can
> affect adjacent structures of the midline brain. Therefore, children with
> ONH may experience a range of medical complications, developmental delays,
> and behavioral characteristics. According to a leading article published by
> the Keck School of Medicine at the University of Southern California,
> between 60 and 80 percent of children with ONH have deficiencies in their
> ability to produce one or more vital hormones. These include growth hormone
> and thyroid hormone, which are both essential for growth and metabolism, and
> cortisol, which enables the body to respond properly to physical or
> emotional stress or illness. Children and adults who are unable to produce
> these and other hormones must be seen regularly by an endocrinologist, and
> most require daily hormone replacement. 
> According to the same article, 71 percent of children with ONH exhibit
> developmental delays. Global developmental delays, sensory processing
> disorders, sleep disturbances, attention difficulties, and seizure disorders
> are common in children with ONH. However, these conditions are seen much
> less frequently in adults with this diagnosis.
> Sensory processing disorder (SPD) is a catch-all term used by occupational
> therapists and other health-care professionals to describe difficulties
> processing input through the senses. In my case, sensory processing issues
> made learning Braille an arduous task. Furthermore, I did not master such
> fine-motor skills as tying shoes and buttoning shirts until I was in my
> teens. Food aversions are common in people with SPD, often related to the
> inability to tolerate certain food textures. SPD may also involve delays in
> the development of oral-motor movements such as the ability to swallow solid
> foods. For further information about sensory processing disorders, I
> recommend Carol Stock Kranowitz's comprehensive and easily accessible book,
> The Out-of-Sync Child.
> Recent studies as well as anecdotal reports from families and professionals
> also point to an increased incidence of autism spectrum disorders and
> autism-like behaviors in children with ONH. However, the assertion that
> blind children with ONH are prone to autism is problematic. No clinical
> screening tool is available for diagnosing autism spectrum disorders in
> blind children. Nearly all screening instruments used to test for autism
> spectrum disorders were developed based on a population of typically sighted
> children. Furthermore, a high percentage of children on the autism spectrum
> are considered to be primarily visual learners, based on diagnostic and
> testing criteria established by sighted, typically developed clinicians and
> evaluators. Our understanding of how blind children process information
> using brain structures typically associated with visual processing is in its
> infancy.
> When a blind child rocks, engages in constant, rhythmic hand-flapping, or
> repeats words or phrases in a sing-song voice, we cannot say with clinical
> certainty that the child's behavior indicates autism. The symptoms may be
> related to factors that are specific to the experiences of a blind child.
> For this reason, some clinicians are reluctant to diagnose autism spectrum
> disorder in a child who is blind. Nevertheless, studies suggest that 46
> percent of children with ONH display significant autistic behaviors or could
> qualify for a clinical diagnosis of an autism spectrum disorder, independent
> of visual acuity. This finding suggests a neurological basis for the
> presence of a clinically significant autism spectrum disorder in many
> children with ONH. 
> Children with ONH often need intensive services from disciplines such as
> occupational and speech therapy as well as the more typical instruction in
> Braille, cane travel, and assistive technology, to alleviate developmental
> delays or behaviors associated with the autism spectrum. These services are
> insufficient or nonexistent in most school systems.  
> When I was born my family had no knowledge of the autism spectrum or of
> sensory processing difficulties. When I was about six months old, I began
> looking directly into the sun, and my parents suspected that I was blind. My
> mother took me to a local ophthalmologist, who diagnosed me with ONH. While
> I understood what my mother was saying at ten months, I did not speak until
> I was three years old. My mother remembers that my speech delay was due to
> my difficulty coordinating the muscles of my mouth to produce intelligible
> sounds. Such speech delays are not uncommon in children with ONH. When I
> finally did speak, I spoke in complete sentences. 
> For as far back as I can remember, I was obsessed with certain sounds and
> with topics related to sound and music. My primary interest was the sound of
> telephone switches from different exchanges. (This was back in the days of
> rotary dial and touch-tone land lines.) I learned every area code in North
> America, and I could tell where a person was calling from by the sounds of
> the local and long-distance switching equipment. I spent hour upon hour
> dialing numbers and listening to the sounds of calls as they traversed the
> network. I know of a few blind people who gained some notoriety for this
> area of expertise, but obsessing on telephone exchanges was not a way for me
> to make many friends. This didn't matter much to me, though, as I had no
> real interest in interacting with kids my own age. 
> I also loved beeping electronic games, and I spent hours playing with my
> electronic toys. One of my favorites was the Speak and Spell, a handheld
> educational toy designed to help children learn spelling. A synthetic male
> voice would speak a word, and you would spell it on a keyboard. Add-on
> modules contained more challenging vocabulary and other games. In short, I
> craved anything that gave me immediate auditory feedback-especially if it
> was musical or electronic. Indeed, my favorite word throughout much of my
> childhood was "beep."
> I had perfect musical pitch and learned to play the piano when I was four.
> However, I lost my musical skill after I started attending first grade at my
> local elementary school. I also had an exceptional autobiographical memory,
> and I could compute difficult math problems in my head. 
> Braille and fine motor skills were another matter entirely. I attended a
> preschool and kindergarten program for blind students at a public elementary
> school, and I had one of the best TVIs (teachers of the visually impaired)
> in our state. Nevertheless, my first attempt to learn Braille was a
> nightmare. The letters on the Braille page felt rough and abrasive, and
> remembering how dots were supposed to form letters was laborious. Processing
> the Braille code was a tedious, frustrating ordeal, and I physically
> resisted my teachers' efforts to run my hands over the Braille page. This
> reaction is sometimes referred to as tactile defensiveness. It is common in
> children with ONH due to delayed information and sensory processing. I
> remember one incident where I became so frustrated trying to read the word
> horse that I had a crying meltdown and refused to cooperate with my teacher.
> 
> Like many children with ONH, I also dealt with behavioral challenges and
> difficulties with self-regulation, some of which I still face to this day.
> My behaviors included rocking, hand-flapping, picking at scabs, and crying
> when I was frustrated, anxious, or overstimulated. Although I have outgrown
> many of these behaviors, impulse control and behavior management still take
> conscious effort. 
> My family and I decided to abandon Braille about midway through my
> first-grade year in favor of a closed-circuit television and recorded books.
> Through high school I attended regular education classes in my local school
> district, where I was the only blind student. I was the school's human
> calculator, but reading print for any length of time was frustrating and
> physically exhausting for me. While I had a few friends in grade school, I
> had trouble relating to peers-particularly if the play was not on my own
> terms. 
> I received occupational and speech therapy as well as orientation and
> mobility instruction until I was in eighth grade. I also attended a summer
> youth program for three years at the Clovernook Center for the Blind and
> Visually Impaired. There I learned most of the daily living, communication,
> and travel skills I use to this day-including dressing, tying my shoes, and
> using a long white cane. I learned to use our local bus system, and I was
> introduced to screen readers and other assistive technology.  
> During my freshman year of high school, after I had finished my third year
> in the summer youth program, something curious happened. I noticed that many
> fine motor skills, such as plugging in appliances, were suddenly much easier
> for me to perform than they had been in the past. It was as if I had
> downloaded external software into my brain that enabled me to perform these
> tasks. I finally learned Braille in much the same way. I sought out Braille
> instruction the summer after my freshman year of high school from a local
> agency for the blind as part of a state program for blind youth
> transitioning to employment. I found that I could read the first ten letters
> of the Braille alphabet with ease after only one day, and I learned the rest
> of the alphabet within a month. Memories from my attempts to learn Braille
> in kindergarten and first grade came flooding back, as if my brain finally
> had become able to process my earlier experiences. With the support of a
> blind colleague who is now a teacher of the visually impaired and a leader
> in our state NFB affiliate, I began reading literary Braille and finished my
> first Braille novel, J.D. Salinger's The Catcher in the Rye.
> While I still deal with aspects of ONH every day, I live as active a life as
> I can. I graduated cum laude from college and earned a master's in social
> work. I worked for three-and-a-half years as a service coordinator, helping
> youth with chronic health conditions and disabilities transition out of high
> school and develop plans for their futures. I now operate a consulting firm
> specializing in educational support and community referrals to families of
> children with ONH. In my business I apply the knowledge and skills I learned
> from my professional training and my personal experience as a blind adult
> with ONH.  
> Most children with ONH have the potential to lead successful and fulfilling
> lives, despite a fairly complex set of challenges. I am shocked and saddened
> at how many children with ONH are placed in segregated classrooms for
> children with more significant developmental disabilities. These placements
> are wholly inappropriate for the majority of children with ONH, who have the
> capacity to achieve far beyond the expectations of many of the professionals
> who work with them. 
> I believe that children with ONH and other etiologies of blindness can
> benefit from many of the educational supports geared toward children on the
> autism spectrum. These supports emphasize social skills, reading and
> reacting appropriately to nonverbal cues, and managing or eliminating
> socially unacceptable behaviors. For me, learning to conduct myself in a
> socially acceptable manner has taken an ongoing, conscious, and concerted
> effort.  
> How can the National Federation of the Blind promote equality, security, and
> opportunity for children and adults with ONH, or indeed, for all blind
> people who have disabilities in addition to blindness? We have amassed a
> comprehensive body of knowledge of best practice in teaching and mentoring
> blind children and adults. We have found ways to encourage tactile fluency
> and Braille literacy, and we have developed and advocated for equal access
> to information. We have championed the use of structured discovery for
> travel in a wide variety of unfamiliar and complex environments. All of this
> knowledge has been developed and disseminated by the blind speaking for
> ourselves. However, though the Federation has a division for people who are
> deaf-blind, knowledge about how to raise, educate, and foster the
> development of blind children with other disabilities is still very limited.
> 
> I believe we need to educate ourselves about the most effective strategies
> to help people with a variety of medical, behavior, and learning
> characteristics. We must find ways to help them develop the skills and
> attitudes they need to achieve their dreams. We have made monumental strides
> to develop and advocate for the supports necessary for blind people, but
> don't let us forget the blind child who operates on the autism spectrum or
> the child who needs extra support to learn Braille. Let us help the blind
> child who has trouble interacting with blind or sighted peers. 
> Blind people with other disabilities can teach us a great deal about
> alternative means of living our everyday lives, and about blindness itself.
> I believe it is important that we collaborate with professional and consumer
> organizations that serve other disability groups. From children and adults
> with disabilities such as autism and complex medical conditions we can learn
> a great deal about how people with diverse experiences develop their
> capabilities.  
> Finally-and most importantly-I believe that we need to promote high
> expectations for all children and adults who are blind, including those who
> have other disabilities or alternative learning characteristics. One of the
> great guiding philosophies of the National Federation of the Blind is that
> blindness is not the characteristic that holds a person back. We live this
> philosophy every day of our lives as Federationists, and we instill it into
> all the work we do. We view blind people as inherently capable of benefiting
> from education, engaging in fulfilling careers, raising families, and
> enjoying all that life has to offer. Similarly, the emerging neurodiversity
> movement is predicated on the right of those with autism spectrum disorders
> and other neurological differences to speak for themselves, achieve
> equality, and live meaningful and productive lives. 
> REFERENCES
> Fink, C. and Borchert, M. (2011) "Optic Nerve Hypoplasia and Autism: Common
> Features of Spectrum Diseases." Journal of Blindness & Visual Impairment.
> 105 (6), 334-338.
> Kranowitz, C.S. (2005) The Out-of-Sync Child. New York: TarcherPerigee.
> Ryabets-Lienhard, A., Stewart, C., Borchert, M. et al. (2016) "The Optic
> Nerve Hypoplasia Spectrum: Review of the Literature and Clinical
> Guidelines." Advances in Pediatrics, 63, 127-146.
> 
> 
> Richard Payne,  President
> National Federation of the Blind of Ohio
> 937-396-5573 or 937/829/3368
> Rchpay7 at gmail.com
> The National Federation of the Blind knows that blindness is not the
> characteristic that defines you or your future. Every day we raise the
> expectations of blind people, because low expectations create obstacles
> between blind people and our dreams. You can live the life you want;
> blindness is not what holds you back
> 
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