by Stephanie Klas, member of the Advisory Committee to the National Center for Children’s Vision and Eye Health
Many years ago, as a young girl in school, I began having problems seeing the chalkboard. My parents took me to an optometrist and my vision was able to be corrected with glasses. So naturally, that was my expectation 22 years ago when I took my 3-year-old son, Brandon, to see an optometrist at the recommendation of his preschool teachers who noticed he held objects very close to his face. Instead, what I learned was that my son had a condition called bilateral optic nerve atrophy, his visual acuity was in the 20/350 range, and he would be living with low vision for the rest of his life.
Low vision is defined as a visual impairment that is not correctable through surgery, medicine, eyeglasses, or contact lenses. It is a broad definition which means that there is wide variability of acuity, functional vision, and needs that individuals may have. Low vision is significantly more common in adults, and this contributes to the lack of general awareness in the school system and population at large for children with the diagnosis. I hope to share several topics of importance for families with children with low vision and to highlight resources and champions we have found along the way.
Children use their vision to explore the world, interact with others, and learn in school. How was Brandon going to be able to manage? He had difficulties recognizing us or anything in his environment that was more than 10 feet away, he would not be able to see the board, worksheets, or books at school, and writing was not possible as the large, dark font he needed to use was unrealistic.
His first champion was his astute preschool teacher who identified and voiced a vision concern. This allowed us to seek care, get a diagnosis, and quickly get connected to the school system for evaluation and accommodations. It is imperative that children with low vision get identified and referred to appropriate educational services as soon as possible – especially during their formative years – so they can get the support and tools they need to learn! The Individuals with Disabilities Education Act (IDEA) ensures that all children from birth to age 21 years receive Special Education Services, such as a Teacher of the Visually Impaired (TVI), an Orientation and Mobility teacher (O&M), and any other services or equipment needed to receive a free appropriate public education. Many states have “Child Find” programs and, hopefully, kiddos are identified and referred early by medical providers or school personnel. For parents who must self-refer, talk to your child’s preschool, Head Start program, or contact your school district’ Special Education department. Another great resource for support is your state Parent Training and Information Centers (PTI). Staff at these centers work with families of children with disabilities to help families participate effectively in their child’s education and development.
One of the most significant factors in Brandon’s school success was access to technology. Technology opened the world to him. Useless paper, pencil, and physical books were replaced by electronic magnifiers when he was young, and by a computer in conjunction with various software and audio-based solutions by third grade. We were so fortunate to have numerous technology champions – the Special Education Director who helped me navigate a complicated system, the technology staff at school who went above and beyond to come up with unique solutions, and the TVI who provided training and anticipate his future needs.
Most, if not all, students with low vision will benefit from an assistive technology evaluation at school. The goal is to provide the student with the necessary resources to ensure equal access to the curricula, help them achieve independence, and ultimately be successful. Low and high tech solutions should all be evaluated along with helpful reading resources, such as Bookshare and Learning Ally. Make sure the evaluation is a multidisciplinary process and includes a member with expertise in low vision assistive technology. Parents and students must be included because technology does not exist in a school vacuum and must be supported at home and have buy-in from the student to succeed. Technology and needs change, so frequent reevaluation is needed to add new solutions to the student’s “toolbox”. Early planning and preparation are essential. It can sometimes take weeks or more to secure materials in alternative formats or new technology. It also takes time for teachers and students to get set up and learn how to use the technology. If books, paper, and pencils are available to students on the first day of school so should technology and accommodations for students with low vision.
I want to highlight the importance of self-advocacy for children with low vision. I strongly believe that if a child starts early and progressively develops this skill, they have a better chance for academic and personal success. This is extremely important when you consider that a large number of adults with visual impairments are unfortunately unemployed. It is up to parents and professionals at school to teach, model, and find opportunities for children’s self-advocacy. When Brandon was young, I approached teachers to discuss how he could tell his classmates about his vision. Some years I read a vision-related story to the class and Brandon had his friends try on glasses that made it difficult for them to see. Other years he let his friends try his CCTV (desktop magnifier) for reading. In middle school we had an amazing physical education champion who agreed to do a whole unit on goalball (sport designed specifically for the visually impaired) and Brandon was able to help teach the unit. There are so many opportunities that exist if we are creative and look for them. The other piece of self-advocacy is being able to proactively communicate with others about needed accommodations. This takes practice and years to develop so if you are a school professional, be aware of the need to provide these opportunities to help students grow. Independence and confidence are the goals.
Finally, there are several psychosocial effects of low vision that Brandon has encountered. When people see Brandon, it is not obvious that he has low vision. His disability is hidden and only apparent if you see him reading from his phone or computer. He misses a lot of social cues and relies tremendously on his hearing. He cannot see people’s facial expressions or see when someone is waving at him. Many have thought him rude when he failed to respond or walked right past them. He also finds it difficult to be in large crowds as it is overwhelming and can be hard to navigate (think school assemblies and fire drills). When his friends are enjoying the independence of having a driver’s license, he cannot legally drive and must always rely on others for transportation. There are also always peers and teachers who do not take the time to understand his low vision needs because few children have this diagnosis. Supporting children through these psychosocial challenges is important.
As in any life journey, we have learned and experienced much, and I hope my reflections will expand your low vision awareness and some of the challenges and opportunities it can present for children. Innumerable resources are on the Prevent Blindness Living with Low Vision website. Countless champions are waiting to make a difference. Whether you are living with low vision, a family member of someone with low vision, or a school professional, remember, everything and anything is possible to help a child with low vision live their best life!
Happy Low Vision Awareness Month