I would like to begin this entry of my blog by expressing my thanks to all of you for taking the time to visit my web site and explore our services. We are all experiencing very difficult and challenging times as a result of the current public health crisis, and my family and I are no exceptions. We encourage you to give us feedback on our earlier blog on the Covid-19 Pandemic or any other aspect of our web site.
I would like to dedicate this post to another challenging area of development for many children with Optic Nerve Hypoplasia: communication. Communication, in all its forms, can be a real struggle for children with Optic Nerve Hypoplasia for any number of reasons. When most people think of ONH, they immediately conclude that delays in a child's ability to acquire speech, language and higher order verbal and written communication skills are related to Blindness or visual impairment. After all, blind and visually impaired children generally miss out on most visual cues, including facial expressions, gestures, and pictures from story books and scenes from children's television programs. Most blind children need to be taught many of these cues (and most other aspects of the visual world) specifically. Much of this training takes place in early intervention programs and is carried out by teachers of the visually impaired, orientation and mobility specialists, and other professionals working in concert with family members--and ideally--other members of the child and family's community.
Through pretend play and interaction with peers and adult role models, typically developed children learn many crucial interpersonal communication skills, including turn taking, understanding others' perspectives, and empathy. From tea parties and costume balls to building airplanes and planning intergalactic military campaigns, typically developed children constantly remain engaged in their environments and practice crucial interpersonal and life skills.
This is not the case for some blind and visually impaired children and many with Optic Nerve Hypoplasia and other conditions, however. Many of our children develop play routines that are based on sounds--without regard to how objects and people surrounding them interact. Typical, two-way peer interaction can be limited or non-existent. While most typically developed children interact, engage, and occasionally, get into mischief, with siblings or other kids in their school or community, play in many of our children is often rigid, circumscribed, and based on our own interests--without regard to the perspectives or interests of others. It often revolves around the sounds of objects in the environment, such as vacuum cleaners, musical tones, or, in my case, the sounds of telephone equipment and distant radio and television stations.
Many professionals attribute these and other developmental characteristics of children with ONH and other causes of blindness to lack of access to visual information, lack of stimulation, and sometimes, failure to obtain attachment and bonding from parents and other family members. However, it is becoming increasingly apparent to families and professionals alike that many of our children have unique and divergent perceptions of their environment that stem from disabilities in multiple senses.
Many children with Optic Nerve Hypoplasia (and some other causes of blindness) have other disabilities like sensory processing difficulties or Autism Spectrum Disorders that limit their ability to take information from their environment. Now--imagine you are three or four and possibly you just learned to talk, as I did. You don't necessarily understand that maybe your younger sister just started talking, and she is two years younger than you. You don't really have a concept about how much you see or can't see compared to the other kids in the neighborhood, your parents, grandparents or maybe your younger brother or sister. If you're anything like me, you really don't care, because you have no real concept of the perspectives of others. Even if you do, you cannot process or carry out more typical activities of those around you--due to either poor sensory processing, low muscle tone or other physical differences, high anxiety, or some combination of the above.
All you know is that the whole world is very topsy-turvy. There is constant uncertainty, anxiety and even danger in possibly every step you take. There is motion, chatter, and sometimes even shouting or anger that you can never control or predict. In this chaos, there is always something that represents complete and total harmony, bliss, order, even physical safety and security. For me, it was telephones, music, cars--or anything that beeped. For other children who are blind and have other sensory impairments or operate on the Autism Spectrum, it can be the sounds of different types of vacuum cleaners, the sequential rhythm of a wash cycle or the harmonies or scripted monologue of a television commercial. This is the life of some children with Optic Nerve Hypoplasia as well as many others with multisensory disabilities.
When I conduct my workshops on development in children with Optic Nerve Hypoplasia, I generally ask my mainly typically developed audience to imagine how the cycles of different types of washers, for example, can be more engrossing to a child with ONH than a trip to Disney World. Indeed, how can the sounds of mechanical telephone switches interacting to route a telephone call be more important to a child than social interactions--as was the case with me?
Now imagine this same child at school, where he is asked to constantly play and interact with peers, engage in activities such as cutting, pasting and organized games, and read and write print or Braille. He may lack some of the basic foundation necessary to interact with other children in a typical manner and have great difficulty processing information due to limited sensory integration abilities.
The child's mastery of specific content areas is emphasized. She is met with disapproval and punishment from teachers and other authority figures for failing to achieve these goals and meet their standards. The result: frustration, withdrawal, anxiety, and ultimately, learned helplessness. In effect, the curriculum is not meeting the child where she is developmentally, because there is little understanding of how she ultimately perceives her environment.
With the increasing prevalence of blind children with additional sensory disabilities, Deafblindness, attention difficulties and Autism Spectrum Disorders, educators are being challenged to develop new strategies of meeting these students where they are.
Recently, Linda Haygood, Speech Language Therapist at the Washington State School for the Blind, and her colleagues have developed a collaborative process called "Playing with Words" that strives to address these needs by helping Blind children develop their spoken or signed communication and promote increased social interaction, creativity and self-determination--including those with additional disabilities such as Deafblindness and Autism who often do not process information typically.
The purpose and goals of Playing with Words revolves around helping students initiate longer and more balanced conversations with peers and family members by creating stories that validate the student's personal experiences and perspectives. The focus of Playing with words is to facilitate the process of storytelling and help the student organize an oral narrative, rather than writing an organized, polished story. In other words, it is process-based, rather than product-based. This process helps Blind students with additional disabilities who often acquire new skills and process the environment differently develop more organized oral and written narratives and engage with peers. Further information on Playing with Words, including examples of stories that students have developed and links to information on the six types of stories, is available from the Playing with Words Microsite, which is part of the Paths to Literacy Blog. One student's example included on the site, "My Brain is an Admiral Washer", revolves around the author's interest in the cycle of the Admiral Washer and resonated with my own experiences.
As a child, I used to love to create narratives around my own experiences. These included times when I met favorite teachers and my attempts to pick up distant television stations. Remember these were the days before cable or satellite television was widely available. In first and second grade, these narratives were a part of my life, and memories of creating them still resonate with me to this day.
I have found this to be the case with some other children with Optic Nerve Hypoplasia who operate on the Autism Spectrum or have sensory processing difficulties that make learning Braille so difficult. Many others, including me, develop made up words--called neologisms--that represent life experiences or social and emotional states. These are often pervasive and very powerfully important to the child, and many of mine still resonate with me to this day.
Meeting students where they are is a basic construct in the education of young children. However, for many children with Optic Nerve Hypoplasia and related conditions, this often does not occur. Because many children with ONH cannot articulate how they process the world around them, teachers and other professionals often make invalid assumptions concerning their strengths, abilities, and developmental trajectory. They may write off a child who fails to thrive in a classroom, interact with peers, teachers and family members in the expected manner or acquire Braille and other basic life skills. Systems-level issues, such as the national shortage of qualified teachers of the visually impaired and related professionals in local educational agencies and the general lack of funding for special education, also have a tremendous impact on the education of our children.
As an adult with Optic Nerve Hypoplasia, it is my hope that approaches like Playing with Words and other strategies that validate and build on the perspectives and life experiences of our children become more widely available. I believe this will lead to better overall outcomes for our children.
ONH Consulting, LLC