Ours seems to be the last district that goes back to school in the fall. Not the day after Labor Day but the day after the day after Labor Day. And so the holiday weekend is spent gathering and updating documents and resources for teaching new school team members about cortical visual impairment (CVI). Since somebody asked, it seemed like a good idea to talk about what those materials look like.
Learning resources about CVI fall into two categories: What is cortical visual impairment generally? And, What does cortical visual impairment look like for my child? The 10 characteristics (Roman-Lantzy) of CVI are a constant. But those characteristics can look different even between kids who score in the same Phase on the CVI Range (Roman-Lantzy). No two kids with CVI are alike.
This year is the start of first grade, which means that reliable materials have been hammered out by now. What is cortical visual impairment? When meeting educators who are new to CVI, especially a general education teacher, keep it simple. CVI is not about acuity, it is about recognition, as Ellen Mazel puts it on her CVI Teacher blog. Ellen uses accessible language to talk about CVI and she keeps her blog posts succinct. In her series of posts on What Do Children with CVI See? the reader can briefly experience a few of the CVI characteristics.
When you have a child with cortical visual impairment, it helps to be specific, give examples. It is easy for Jasper to find mommy at home in the kitchen, an environment that is familiar, with low visual complexity, and low sensory complexity. But in a crowded setting such as a music festival, with lots of people and noise (complexity and sensory complexity), Jasper can easily become disoriented and keeping track of mommy becomes difficult. Complexity, in all of its manifestations, is a huge challenge for my son who is in Phase III CVI, so the conversation begins there and will grow as the school year moves forward.
School is about more than learning facts, it is where our kids make friends. In so many ways, the characteristics of CVI work against this, especially when your child cannot recognize the faces of his schoolmates. Jasper is so happy and friendly and social, he knows everybody! So to drive this home to school teams, I emphasize that my son does not recognize his mother’s face. Instead he relies on other visual – and auditory, voice – cues to identify familiar people. It is so important for the education team to understand the impact of this deficit, if our kids are to be part of an inclusive environment and form friendships just like any other child.
These are the verbal descriptions to introduce the iceberg that is cortical visual impairment – to describe my son, to answer the perpetual question, What does Jasper see? This supplements the blog posts, articles, and thesis projects and other resources that are provided. It goes without saying that all of this is in addition to the tome that is the Individualized Education Program, or IEP, that accompanies each of our kids.
The bulk of the overview of CVI comes from Ellen Mazel, and a publication called A Team Approach to CVI by Donna Shaman, an OT from the Seattle area. Parts of the publication now feel dated but the team approach to CVI cannot be emphasized enough. Like most of us, our kids use vision all day long, vision is not restricted to certain tasks with certain team members. Improving vision for our students with CVI is the responsibility of everybody on that educational team.
Parents of children with CVI are well known for creating our own materials, out of both necessity and desperation. From toys and Little Rooms and black paged books and modified books and bubble letter sight word cards, to materials to help educate educational teams on CVI. Jasper has at least two such documents that help describe his cortical visual impairment. The first is a vison book that addresses the impact that CVI has on areas such as literacy, mobility, social behavior, and strategies for each area. The second is called What Jasper Sees. It is a collection of snapshots that illustrate how Jasper responds to visual targets or objects in the natural environment. An example is seeing elephants in a low complexity setting at the zoo. The book also shows what visual information Jasper misses. He sees the elephants but not the giraffes, farther away and against a more complex background, they are lost to him. Underneath each image, a few sentences describe the scene, Jasper’s response, and the CVI characteristics at play.
Lastly, most importantly, the packet always includes our most recent CVI Range report. Each year since my son was almost two, we have traveled to Pittsburgh for our assessment with Dr Roman. His vision is described in terms of the CVI characteristics and how each one affects him. Special emphasis is given to the school setting, his progress, frustration behaviors that arise with visual fatigue, and any areas of concern. In my mind, it says everything you could possibly need to know about my son’s cortical visual impairment.
Below is the short back to school list with links. As mentioned, this is the tip of the iceberg. Throughout the year, other blog posts, resources, articles, webinars, online training opportunities are regularly shared with the school team, along with participating – insisting on participating – in CVI inservices. Wouldn’t it be so much easier if cortical visual impairment had the same kind of name recognition as autism?
CVI back to school
Educators should be encouraged to follow Ellen Mazel’s blog, CVI Teacher
A Team Approach to Cortical Visual Impairment by Donna Shaman, especially the chapters, What is CVI? and A Team Approach
Cortical Visual Impairment: Special Topics, in a series of videos, Christine Roman-Lantzy talks about CVI, sponsored by the West Virginia Department of Education