Let’s change the way we talk about kids with CVI

“He’s just so…UNIQUE.”

“I’m not sure we would have the expertise needed to assess her.”

“He almost sounds like… a case study.”

“He sounds too complex to be evaluated.”

Some days our kids with cortical visual impairment (CVI) really put the special in the term “special needs.” Lately, in yet another quest to find a provider to conduct an appropriate assessment, it is back to this all too familiar language when it comes to talking about our children with CVI.

The language we use around CVI is important. Usually “language” means, the language we use with children who have CVI. Slowing language down. Keeping language simple. Salient features language (Roman). Anticipatory or radio language (Roman, Dutton). Asking clarifying questions of our students with CVI, “What’s different about that dog?” “How do you know that’s a hippopotamus?”

Let’s make students with CVI less “challenging” and “complex.”

This is a different language than the one we use with students with CVI. This is about the language that the grown ups in the room use when describing or talking about children with CVI. By grown ups I mean providers – medical providers, teachers, therapists. CVI is a brain based visual impairment. At this point in time, there is still more that we don’t know about the brain, than we do know. While each child with CVI is different, each one has ten things in common (CVI 10 characteristics, Roman-Lantzy). There is a predominant tendency to  label children with CVI as “too complex” or “challenging.” But when you take the time to learn about the disability that is CVI, to  learn the ten characteristics, to learn about their visual perceptual differences, it becomes a whole lot less complex.

As a provider, when we continue using words such as challenging or complex, how does that prepare you to work with a child with CVI? “This student is so… complex… I don’t know what I’m going to do.” Doesn’t that kind of language tend to set people up for failure? And how do you provide appropriate services for that child when you cannot get beyond that word, challenging? That kind of language is not helpful to anybody. Least of all, to the student who has CVI.

When you make the time and effort to learn about CVI, our children with CVI become a whole lot less challenging and complex. That is when you begin to see cortical visual impairment.

“Multiple disability.”

In some places, the classification for serving students with visual impairments is ocular or… multiple disability. Does that make any sense? How is this appropriate? Are those two terms similar? Are the two terms related? What if you have a student who has ocular blindness, in addition to another disability? How do you classify that student? And what if you have a student with CVI – but he does not have “multiple disabilities.” It gets pretty murky, pretty fast. For comparison’s sake, are all children with autism non verbal? Would we ever label children with autism that way? Of course not. And all children with CVI do not have multiple disabilities. But all children with CVI do have a brain based visual impairment. Multiple disability is not an appropriate umbrella term to describe all students with CVI.

Is it the responsibility of the teacher of students with visual impairments (TVI) to determine whether a student qualifies as multiply disabled? It is not. Whether the visual impairment is caused by a problem with the eye, or is caused by a problem with the brain, the responsibility of the TVI is to assess vision: functional vision, and access to the educational curriculum. Of course, multiple disability is an important category and consideration when it comes to providing appropriate services to any student with multiple disabilities. The term “multiple disability” is not a synonym for the brain based visual impairment of CVI. We need to start classifying students with visual impairments as either ocular based, or brain based.

Let’s make our children with CVI less “unique.”

Our challenge – all of us – is to increase awareness and knowledge and understanding of CVI. Take the time to learn about our kids. Take the time to learn about CVI. When physicians and ophthalmologists and neurologists and physical therapists and occupational therapists and orientation and mobility specialists and special educators and speech therapists and teachers of the visually impaired learn about CVI – our children with CVI become less “unique.”

I’m pretty sure that parents of children with CVI will be Ok with that.