Episode 167: Alissa DeSousa: Using Video to Support Cortical Visual Impairment

This week, Rachel interviews Alissa DeSousa, a mom of a child with Cortical Visual Impairment (CVI) who started a YouTube channel for kids like her son. Alissa shares about her journey getting a diagnosis for her son, how they came to better understand CVI, why she started a YouTube channel for people with CVI, and discusses resources that support literacy and visual discrimination for people with CVI, like the book “Little Bear Sees”. 

Before the interview, Rachel talks about her “Takeover” of Andi Putt’s (@mrsspeechiep) Instagram page. Andi was talking a lot about AAC and doing an entire series on AAC and autism. During the takeover, Rachel got a ton of questions about requiring prerequisite skills before giving AAC. There were a lot people on Instragram who told Rachel there should be prerequisites for AAC, e.g., AAC users must have to have joint attention, visual discrimination skills, early language, etc before getting a device. Rachel disagrees with this mindset, and Rachel wonders where it come from. She proposes that it may come from an expectation an child will use a device immediately upon being introduced to it. She notes that taking longer to learn a device doesn’t mean they have the “wrong” AAC system. We need to provide support to communication partners and encourage modeling, not blame the student’s lack of skills. 

Key ideas this week include: 

🔑 Alissa shares the analogy of CVI being somewhat like looking though a kaleidoscope - you can “see” the image, but it is jumbled and the brain has a difficult time putting it together.

🔑 It can be very isolating having a child with special needs - there are so many appointments and things that you need to do, you end up missing out on a lot of things. Connecting with other parents of kids with special needs can really help parents feel more connected.

🔑 Alissa found out that kids with CVI do better with reduced visual clutter, technology with backlights (like an iPad or a TV), and black backgrounds. These preferences gave Alissa the idea that videos especially for kids with CVI could be very helpful.