How my world works: Self-advocacy and CVI

Krish, an 8-year-old with CVI, shared a presentation with his class about how his world works.

Self-advocacy and CVI

Krish is an incredible kid. He’s 8 years old and learning to advocate for himself and his CVI. He’s living in a world not designed for him, but he knows what accessibility looks and feels like for him. Krish created a PowerPoint presentation to share with his class called, “How My World Works.”

“I always tell him he is like a CVI spokesperson to show families how well our kids can learn!” —Gunjan, Krish’s mom

Krish’s mom, Gunjan, shared this self-advocacy success in the CVI Now parent group. Gunjan wrote, “He asked me a ton of questions to understand CVI better like, ‘How did I get brain damage?’ ‘Why doesn’t Rohan (his twin) have CVI?’ But the question that got me the most was ‘Why is my CVI forever?’ His OT and PT skills have improved, speech has improved, but his vision will forever be CVI.”

As parents, we have such a big role in helping our kids understand their neurodiversity and their gifts—to figure out what makes them happy and how they want to access the world. And this is tough. Gunjan shared that she always tries to help Krish realize his amazing strengths and skills. 

“[I]t became a philosophical conversation about everyone having something about them that is special or that they struggle with. His brother piped in and said he gets anxious, and that’s something that makes him different." —Gunjan, Krish's mom

When Krish asked about why his CVI is forever, Gunjan said that “it became a philosophical conversation about everyone having something about them that is special or that they struggle with. His brother piped in and said he gets anxious, and that’s something that makes him different. I also explained neuroplasticity and said what is amazing about Krish’s brain is that when a thought goes through his head and it runs into brain damage, it finds another path to get through, and that’s why his brain gets more tired than other people’s brains. We also talked about Autism since he has met children with Autism, and said how they have a special way that their brain works, and that they can think in ways we can’t imagine. I told Krish that he has amazing hearing skills and that he can repeat a conversation even when you think he isn’t listening.” 

Krish’s presentation, “How My World Works”

“CVI affects me in these ways: I have trouble seeing some faces; I have trouble seeing things further away; I have trouble seeing in crowded areas like when I went to Italy . . . If you see me walking, give me some space for my cane. Don’t be scared to ask me about my CVI. When there is a lot of action and sound happening around me, I can get overwhelmed and it can be hard to use my vision. Sometimes it’s hard for me to catch balls fast and keep up with running, but I’m getting faster and better every day!” —Krish 

Questions and feedback from Krish’s classmates

Krish’s TVI reported that the kids and teachers enjoyed Krish’s presentation and found it informative. His classmates gained insight into why Krish does things a little differently. Some of the comments included: “I didn’t know that is why you used that” and “oh, that makes sense.” His peers loved his PowerPoint presentation and wanted to learn how to make their own! 

Krish answered many questions from his classmates. For example:

  • "How did the brain damage happen?" Krish explained that he was born prematurely.
  • "When did you first get the cane?" Krish described that he used a walking toy first then a cane and that his cane will get longer as he gets taller. Krish explained that he uses it to figure out if he needs to step up or down, or if there is something he needs to move around. He also stated that if he notices one of these things, his brain knows how to safely get around it.
  • "Why did you do this presentation?" Krish answered that he wanted to tell people about his CVI and bring more awareness to it. He wants people to know about it and how it affects him. He also made a comment that he is pretty famous in the CVI world. 

Krish is a gift to this world. His voice and advocacy will continue to build CVI awareness and push the educational and medical communities to figure out more ways to support and provide access to all individuals with CVI.

Learn more about how Krish’s TVI and AT specialist implement a literacy approach matched to Krish’s needs: Trust the process: A case study in literacy and CVI