One of the most under-diagnosed and misunderstood vision impairments in the country. But a local school has a new way to try and help kids living with this condition.”I can be around friends, and I don’t feel like left out,” said Ava Henahan. “I’m the only one with a disability.”Ava Henahan is feeling more comfortable in school these days. She’s a second-year student at Perkins School for the Blind, and she says before enrolling here, she was often misunderstood in class. “I always put my head down. I put my head down because my eyes get visually tired,” said Ava Henahan.Ava Henahan’s mom, Kathy, said teachers in past schools didn’t understand why her daughter kept her head down in class.”If you’re not physically looking at somebody when you’re talking to them or when they’re talking to you and you’re looking over here and doing other things, you’re not paying attention. That’s a teacher’s reaction, but there’s a reason for it,” she said.Ava Henahan has a form of blindness called cerebral visual impairment or CVI. It’s caused by damage to the visual processing area of the brain. “Looking at something for a long time gives me a headache,” said Ava Henahan.Ilsa Willems is the senior director of the CVI Center at Perkins and she said one of the challenges with this condition is that every person sees things differently. “For our students with CVI they might be able to take in that image, but it’s then really hard for them to process and interpret what it is that they’re looking at,” she said. “Some students they might have great vision. It’s just trying to process what it is that they’re looking at. Some students also might have an ocular visual impairment. So, it’s not just that that pathway is interrupted or that there’s some damage, it’s also that the image going to the back of the brain is blurry. So, some of our students might only be able to recognize highly familiar items, items that they see every single day.” Ava Henahan’s vision loss is in her lower right quadrant.”If you can envision between 4 and 7 o’clock. That area is where there’s a deficit,” said Kathy Henahan.She said it hasn’t been an easy road to get school resources until now.Perkins created a new assessment tool for educators called Perkins CVI Protocol. It uses a science-based approach to evaluate students with CVI and determine their individual needs to improve learning in the classroom. “It wouldn’t then magically change their vision, and now they can see, but helps to figure out what’s the best way that we can provide access to that student. What is the best way for them to be able to see it, to be able to recognize it. And that’s not always vision. How can we also include their touch or their auditory sense?” Willems said.A game changer for Ava Henahan, who now knows what works best for her. “I have a schedule that I can read better,” Ava Henehan said.”The right application, doing worksheets, doesn’t work for her. She really needs to be on a computer. She needs more audio. She’s a much happier kid. She’s more confident. She is amongst peers that are like her. They understand each other,” said Kathy Henehan.CVI is now the leading cause of blindness and low vision in the U.S. Some studies have even shown that one in thirty kids in elementary school have it but may not even know it. The National Institute of Health has now put CVI at the forefront of its strategic plan, aiming to raise awareness and get more research on this condition.

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