Yes, you need to understand something about CVI if you work with my child

Social skills play groups are hard to come by. And when your child has cortical visual impairment (CVI), it is even harder. For some reason, CVI does not easily translate when it comes to speech and communication providers. Surely there are exceptions, but that has been our experience. So, among other things, the last month has been about deciding whether a play group is a good fit. Finding the right fit has been like trying to fit a square peg in a round hole.

Private speech therapy began before Jasper’s second birthday. It would be another six months before he said his first words. Ever since babyhood, he has been social, in the form of babbling, along with his favorite “word,” ya-yow. It is hard to even remember how old he was when ya-yow started, it seems to have always been there. Looking back, and thinking about his CVI Range assessment (Roman-Lantzy), his preferred color, and the context in which he said ya-yow, this was likely his word for yellow. Long before he could talk, his first word was his preferred color. Read that again, and think about about how powerful preferred color must be for a child who has CVI.

Last spring, we concluded speech therapy with his provider of nearly three years. “I’ve done as much as I can, one on one. What he really needs is a pragmatic social skills group.” We know that the CVI characteristics of distance, complexity, movement, latency, difficulty with faces (Roman-Lantzy) all work against the best interests of a child with CVI who is trying to make friends. Visual latency makes it difficult for him to pick up on and interpret the fleeting facial expressions, gestures, body language. The complexity of the human face can make it hard to make eye contact or to even look. When other kids are at a distance – and by distance, we mean beyond five or ten feet away – complexity works against visually locating a specific child against a complex scene such as the school playground or even the classroom. Movement interferes with everything. Jasper is in Phase III CVI and when there is movement he has to look, it is not a choice for him, that is his disability (Roman-Lantzy).

How do children with CVI learn about social skills, how do they navigate social situations, talk to other kids, make friends? My son with CVI should have the chance to learn all of these things. But teaching him looks different. As the parent of a child with CVI, these decisions can be agonizing. And the decisions come at us, one after another, and they do not stop.

After his first play group, the facilitator admitted she had not read a word of the information provided on how CVI affects Jasper. In the same breath she referred to her communication materials – pictures of strangers cut out from magazines, laminated, black and white line drawings of facial expressions and super hero like figures – being “accessible” to all the kids in the group, while clearly her definition of accessible excluded my child with CVI. Jasper is very social and had enjoyed the group. But if it is not accessible and meaningful to him, if the provider is going to skimp on CVI, what is the point?

Every time I have neglected to advocate or speak up for my son, and it has happened a few times, I have regretted it. Learning social skills is so important. His CVI is so important. He has a right to access to any environment or setting, and a right to  providers who are knowledgeable about CVI.

And so this is what I said:

When interviewing any potential new provider to work with my son, my first question is always, Tell me what you know about cortical visual impairment. With anyone new, I provide as much information as possible about his CVI. At school, I constantly work to educate his team about CVI and improve the way we do things for Jasper, how to modify his work and give him that access that kids with typical vision experience naturally. CVI means he does not have access to incidental learning, which is why he needs accommodations (Roman-Lantzy). At school, his IEP consists of a long and growing list of accommodations and modifications to give him access to the curriculum, and minimize his visual fatigue so that he can get through an academic school day (Roman-Lantzy).

While I certainly would not expect you to become proficient in CVI over the next month, I do expect you to understand how his CVI impacts his learning and social skills. His vision book specifically addresses CVI and social skills, and ways you can help Jasper navigate those situations. In order for a playgroup to be meaningful for him, and worth our time, there needs to be some consideration of filling in those gaps for him – that incidental learning – and accommodating him to make the experience accessible. Because of the lack of awareness and education around cortical visual impairment, I never assume providers have prior experience with CVI, so it falls to me to make up for that. And so I have concerns about whether this group will be accessible for him and a good fit.

For example, the homework assignment is more meaningful to Jasper if it is familiar, so I would use a familiar photo to represent “calm” and explain the salient features of that picture of calm. With a visual that is familiar to him (versus strangers in a magazine picture), the experience or lesson is more meaningful. Looking at that picture on a device with backlighting visually anchors him, and reduces his visual fatigue in the midst of his school day.

I am always happy to talk about my son, or CVI, or provide more information, or answer any questions. His cortical visual impairment has been my primary preoccupation for these last six years.

In the end she agreed to read about CVI and accommodate Jasper as best she could. She also offered the suggestion of finding a provider who knows CVI. If only there were social skills play groups for kids with cortical visual impairment. Or physical therapy. Or occupational therapy. Or speech. Or an educational team with teachers who know CVI. What a wonderful world it would be if everybody could start seeing CVI, could start seeing our kids.