Paths to Literacy

for students who are blind or visually impaired

What We Talk About When We Talk About CVI, Part One

A typical Kindergarten worksheet with images and simple wordsNovelty. Complexity of array. Sensory complexity. Preferred color. These are some of the characteristics of cortical visual impairment. More importantly, these are descriptors for my son’s vision. Such words have become a second language. At times it feels like a secret language. Learning any language is easiest when you are immersed in the culture. Our cultural immersion began with my son’s infant stroke and subsequent diagnosis of cortical visual impairment in 2011.

Educating My Son's Educational Team

When talking about Jasper, the words and language of CVI come easily. At this point, it is almost not possible to think about him without also thinking of complexity in all its forms, preferred color, field loss, distance viewing, to name a few. They are meaningful because they apply to my child, because these words define his vision, because without understanding these terms, it is hard to understand him. Educating my son’s educational team – which changes and rotates from year to year, starting from scratch each time – means providing reports on his most recent CVI Range assessment (Roman-Lantzy). It means creating original materials to help explain my son’s vision. It means providing his team links to appropriate online resources such as the CVI Teacher blog or the West Virginia Department of Education (yes, West Virginia).

Learning the Language of CVI

It all begins with learning the language. If you do not learn the language, reports and resources are meaningless. My son is only in kindergarten, but this started at birth, and I have educated many providers on his cortical visual impairment. Over and over, CVI is described as a “complex” diagnosis. Yet when sending updated reports or a particularly relevant blog post or website to his team, the messages are met with silence. No response, no questions from his educators. So how does this impact Jasper? How does this play out for him in the classroom? Like most CVI parents, I could talk about my son and CVI until blue in the face, but there are no questions. Every time, it makes me wonder how much they really understand about CVI.

At a recent CVI training with my son’s team, I put this to the test. (Ongoing CVI training is written into my son’s IEP under Staff Supports, and should be for every student who has CVI.) The meeting was called to address how to modify the mess of worksheets my son brings home from kindergarten, how to make the mess accessible to him, how to make learning accessible to him. Referring to my son’s list of IEP accommodations, I asked his team about close viewing. The tendency is to discourage young children from viewing anything too closely, like sitting too close to the TV. Why does Jasper need to be allowed to examine objects close up? Five teachers from his eight person team sat at the table, silent, looking at me. Surely everybody there was aware of Jasper’s accommodations, but they did not know the meaning behind the accommodations. When Jasper holds an object up close to view, he blocks out everything around it so that his brain can focus on that object. By doing this, his brain has less visual clutter to deal with, to process, so he can see that object. If the object is ten feet away, then his brain has to work harder to sort out all of that other surrounding visual information. He may not see that object ten feet away, not because it is blurry (acuity), but because his brain has to sort out that object from everything else that surrounds it. For the team it was an audible Aha moment.

As a parent, it was an alarming moment. How will educators ever understand our kids with CVI if they do not take the time to learn the language?

Visit Start Seeing CVI for more posts like this.

Collage of what we talk about when we talk about CVI

Comments

In response

Posted by Tracy Fitch

I am so sorry you've faced such difficulties with ensuring your son's visual condition and accommodations are understood and implemented. Unfortunately it can prove to be a difficult task for parents and TVI's alike. I fully agree with encouraging if not putting in the IEP as you did continued training, especially as teachers and service providers change. Have you reached out to your most local CVI Specialist or Mentor for additional support? As the CVI Specialist in my area I'll share your website with parents and teachers. Love hearing the parent perceptive on Paths to Literacy!

re: Tracy

Posted by brenda

Thank you, Tracy! I appreciate your ideas. Here in Washington State, we really don't have any local mentors (but I am working to change that!). I do consult with a few TVIs long distance, including Dr Roman. The experience I wrote about really showed me how much more training the team needs. It isn't enough to talk about Latency, or Color, or Distance. It needs to be, "This is what latency means for my son, this is how it looks in the classroom." It will definitely inform how I approach training with his team going forward, and I am always part of team training.

Thank you again.

Brenda, your son is very

Posted by Christine Spratling

Brenda, your son is very fortunate to have you as his constant advocate, because as you mentioned, educational teams change frequently and the level of knowledge about CVI varies greatly from team member to team member. I agree that ongoing support to your son's educational staff needs to be documented in his IEP. One of my former student's IEP not only had that support stated in the IEP but we even specified who should provide the ongoing training. We then scheduled monthly meetings as a team (or at least we tried to...) and had specific topics that we discussed. Another way to try and reach all team members - since we know how hard it is to get everyone committed to the same time at the same place - is to start a shared google folder or a website where you can post topics or strategies and all team members are highly encouraged to post a comment. If you can get your son's school district to offer some kind of credit or professional learning units for such meetings or even virtual meetings, then you might have more success getting everyone on board. It takes one person on your son's team to "get it", and then that person could be in charged with monitoring all CVI accommodations etc. I know, it sounds easier said than done, but you are doing an amazing job.

re: Christine

Posted by brenda

Christine, thanks for your suggestions around training. That's another area we are revamping. It's definitely hard to get everybody on board, and I like your "virtual" suggestions. And I like the comment idea to help ensure that team members actually read the information provided. Great suggestions, thanks.

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