On the brink of November, for a child with cortical visual impairment (CVI), it is still the beginning of the school year. Each school year is different for all kids, but for kids with CVI, each year may as well be a whole new school (especially when it really is a new school, new school district, new neighborhood, new city, new state, a whole new world). The CVI characteristic of novelty (Roman-Lantzy) has an impact on our kids and “new” lasts longer. Newness lingers for them, much longer than it ever would for us.
Along with a new school year, come new accommodations, new routines, new peers. New teachers, therapists and paraprofessionals, all of whom are usually “new” to cortical visual impairment. For children with CVI, there may also be new… behaviors. (Kindergarten, I’m looking at you). Parents of children with cortical visual impairment call it the CVI meltdown. Every parent of a child with CVI knows the CVI meltdown, we have all been there. Or are there. What is so important for educators to understand is that, when you are looking at our kids, you need to look at everything from the perspective of CVI.
In fact this is how the very first Start Seeing CVI t-shirt was born – you need to start seeing my child, you need to start seeing his disability. When you look at him, no matter what you are doing, you first need to see the ten characteristics of CVI (Roman-Lantzy). Where are you standing in relation to him (preferred visual field)? Are you standing in front of him with a glaring light source behind (light)? When you approach to talk to him, and expect his attention, is there a stream of students rushing past behind you (complexity, movement)? What does he see in front of him when he is seated (or standing!) at his desk? And so on and so forth. These are the things we always need to think about when it comes to students with CVI. Every activity, every transition, every class, every therapy session, all school day long. Yes, it is a lot of work, a lot of thought, a lot of mental energy. Any parent of a child with CVI will agree with that, because we do this all the time. It is what our kids require in the classroom. Children with autism have Applied Behavior Analysis. Children with cortical visual impairment have the CVI Range (Roman-Lantzy) and the ten characteristics.
Everything needs to be viewed from the perspective of the child’s cortical visual impairment, as Christine Roman advocates in her approach. And, as parents observe, every day, in the lives of our kids. For every incident of school behavior that parents hear about, there are always a few CVI characteristics that play a major role, but go unseen by the educators in the room.
At the start of the school year, we all have high expectations. Some of us have made drastic life changes or moved heartbreaking distances, in the hope of improving the life of our child with CVI. More than anything we want a strong start for our kids. A strong start means our children feel included, empowered, supported, and as much as possible, independent. It means that a child has visual access to an educational curriculum modified for them so that they can not only make it through the school day, but show us how smart they are along the way.
No matter how small a modification, each one matters. Because through the course of the school day, it all adds up. Maybe having one too many math equations on a work sheet, or one too many real objects in front of him when asked to make a choice, seem like no big deal to us. Maybe laminated materials are the standard, and are overlooked. Maybe the cute cartoon pictures that adorn all the educational materials these days seem harmless. Maybe the desk with students passing by all day long is the best they can do. Maybe the afternoon light streaming through the window seems calming, not distracting. But not for the child with CVI. The child with CVI cannot not look at that light. The child with CVI cannot not look at that movement. That is his disability, that is his cortical visual impairment. When it comes to CVI accommodations, there are no little things.
The CVI Range approach advocates for a constant CVI perspective. That means considering the world from the child’s sensory experience, not our own. Because of a lack of understanding, teachers may say the maladapted materials were “fine” for the student. “It’s only a little,” or he did not “mind,” or the lamination did not “bother” him. And at the same time, teachers are asking parents to explain a child’s unwanted behaviors.
As a neurotypical adult, how can we know the impact of that extra object or that extra equation, or the movement of peers? Or the impact of the shiny, bouncing laminate, on a child with CVI? Never compare our normal, to theirs. We cannot compare our neurotypical experience, to the sensory experience of a child with CVI. It is about them, it is not about us. Don’t use your normal, to measure my child’s cortical visual impairment.