Show Notes:
A Young Adult Reveals the Daily Realities of Cortical Visual Impairment (CVI) That Every Parent Needs to Know.

Unlock a deeper understanding of Cortical Visual Impairment (CVI)! Join host Tonya Wollum on Water Prairie as she engages in a powerful and insightful conversation with Ally Pack-Adair, a young adult living with CVI.

If you’re a parent of a child with visual impairment, particularly Cortical Visual Impairment, or are simply seeking clarity on this often misunderstood condition, this episode is for you. Ally shares her personal CVI experiences, explaining the crucial difference between CVI and ocular visual impairments in children.

Learn about the daily impact of Cortical Visual Impairment, including challenges with visual processing, the concept of visual clutter, and the importance of contrast sensitivity. Ally offers a first-hand account of navigating the world with CVI, providing invaluable insights for parents seeking to support their children.

Discover practical strategies and resources mentioned in the episode and gain a better understanding of the lived reality of someone with Cerebral Visual Impairment (an alternate term for CVI). This direct conversation aims to demystify CVI and offer hope and understanding to families.

Connect with Ally:

• 👉Instagram: @advocatingwithally

Resources Mentioned in This Episode: (*Some links are affiliate links. As an Amazon Associate, I earn from qualifying purchases.)

• Seeing Ai: https://www.seeingai.com/
• Aira shopping app: https://aira.io/
• High Contrast Placemat: https://amzn.to/4icHcJ8
• High Contrast Dinnerware (Black): https://amzn.to/42wLTrl
• High Contrast Dinnerware (White): https://amzn.to/4j4pFUx

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #122: Cortical Visual Impairment: The Most Confusing Blindness Explained

A Young Adult Reveals the Daily Realities of Cortical Visual Impairment (CVI) That Every Parent Needs to Know.

(Recorded January 27, 2025)

Full Transcript of Interview:

Tonya: Is your child’s vision a mystery? They see, but not like others.

In this episode, we’re learning about cortical visual impairment or CVI, the leading cause of visual impairment in children,

and we’re hearing directly from someone who lives with it every day, offering the understanding and insights you’ve been searching for.

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

This week we’re tackling a topic that can feel isolating and confusing. Cortical visual impairment or CVI.

We’re honored to have Ally Pack-Adair join us to share her personal journey and shed light on what CVI truly means for individuals and their families.

Get ready to gain invaluable understanding and practical insights that can make a real difference in your child’s life.

Ally, welcome to Water Prairie.

Ally: Thank you. I’m happy to be here.

This has been a topic that I have wanted to cover for almost four full years now. I have friends who have children who have CVI, and it’s a topic that having a child myself who’s visually impaired has been a different topic that, so I wanted to.

To bring Ally in so that we could finally understand what this is. And I’m sure we have some listeners out there who either have a relative who has a child with CVI, or maybe they themselves are a new parent and they’re trying to understand it. So, Ally, I appreciate you coming in and being willing to talk to us and help us understand the topic better and to be able to share as a young adult.

Who just happens to have CVI to help our parents understand a little bit more about what that is.

Thank you for having me. I’m happy to share my experiences.

Excellent. Thank you. So the first question I wanted to ask you is, let’s start at the basics. What is C-V-I?

C-V-I is a cortical visual impairment, sometimes known as a cerebral visual impairment.

It’s a type of visual impairment that occurs in the brain and not the eyes. So it’s how your brain communicates with your eyes is what’s causing your vision to be different.

It’s a defect in the visual cortex or the occi occipital lobe, typically caused by a brain injury or a traumatic brain injury. It commonly happens in childhood, but common causes of CVI are stroke, near drowning, near sids, cerebral palsy, infantile sleep apnea, CMV, or childhood meningitis. I’m sure there are more, but those are the only ones that come to mind right now.

I was gonna ask, how does that compare with other visual impairments, but you’ve already answered that, that it’s not the eye and I had not realized so many different childhood traumas that can can happen could lead to this.

It’s typically a lack of blood or oxygen to the brain. I know there’s a deeper explanation to it, but I can’t remember it at this time. I am not a scientific expert.

You’ve given us more than, than what I knew before because it’s not a visual impairment that’s a physical eye impairment. How does CVI impact a child’s daily life?

In most cases, it’s defined as still being legally blind. It really depends on the state, if they’ll define it as legally blind for funding purposes, but in my case, I’m defined as being legally blind. It impacts a child or adult’s visual processing.

For the most case, and, um, basically just how they view the world. I can go more into that if you would like.

Because a lot of my listeners are parents of a young, young child. They may have a child who’s not able to communicate with them yet and tell them what’s happening. Does CVI only affect the child’s vision or does it affect any other part of their life?

It’s common for children with CVI and other visual impairments to exhibit stemming behavior that you’ll often see in people who are neurodivergent. Most professionals refer to this as blindisms. It’s a way of processing the world around you when one of your senses are impaired. Now, it doesn’t mean that visually impaired children can’t be neurodivergent.

They certainly can, but this is just one of the behaviors that visually impaired children exhibit. Children with CVI can also get overwhelmed and overstimulated with their environment easily. I know that I often did as a child and still do because of

 the overload of visual information. It’s hard to process visual information when your brain isn’t connecting with your eyes and you can’t process it correctly. There’s the concept of visual clutter. When too many images overlap at once. The best analogy for this would be looking at a Where’s Waldo or I Spy book.

Imagine looking at that all of the time.

So if you’re looking at an I Spy book all of the time, if a, um. If a person with regular vision is looking at an I spy book all the time, that’s kind of like what CVI is like. We have to pick apart our visual information and then we’ll often get overwhelmed.

That’s interesting because I’ve always thought about it like other visual impairments where.

It’s more of like for, for, for my daughter example, our, our listeners are familiar with my family story. So my daughter has low vision. She’s not legally blind, but her vision fluctuates between 20/60 and 20/150, depending on the time of day, the amount of fatigue, the amount of brightness, the amount of, of clutter that’s around her.

And um, and so when she was very young as a parent. It was helpful for me to have an idea of what she could or couldn’t see because it wasn’t fair to try to expect her to do things that were visual if, if they didn’t exist for her. And we had a doctor who had us take sheets of plastic off of a Ziploc sandwich bag and put three of those together.

And he said holding that up was comparable to what she was seeing most of the time. And so I could, as a parent, I could hold that up and watch tv. I could hold that up and, and look around the room to see, all right, do I need to move colors around? Do I need to, to, like, are there contrast issues happening?

Things like that. And it helped me understand a little bit better. It didn’t change Emily at all did not change her life at all. But for me as her mom, it helped me get a better idea of how to help her, what types of toys I might wanna get, things like that. And especially when she started reading, I. The illustrations inside books.

Um, showing that to my mom. She started outlining pictures so there was more contrast so that Emily could see what the picture was to make it easier. And, um, and so I’ve always thought CVI would be a similar type thing. So is the blurriness part of the vision or is it trying to interpret the scene around you and like you’re saying with that I spy book and just.

Trying to isolate certain things or can you explain that?

Yes. So with CVI, there’s also fluctuating vision day to day definitely with visual fatigue, environmental factors. That’s still something that occurs, but it’s important to acknowledge that all visual impairments are different. Contrast is a huge thing among children with CVI.

I know that it was for me, we did use many different strategies to make things high contrast when I was younger and I still do in my day-to-day life. Something that was huge for me when I was younger was using black and white overlays, like using a black place mat under white papers or a black plate if I was going to have, um, like white rice or mashed potatoes so I could see where my food was.

We did outline books when I was younger, but sometimes the clutter on the pages was too much, so we would end up texturing the books instead. There’s obviously different levels of what children and adults can see. And children don’t outgrow their visual impairments. There’s a common misconception that children outgrow CVI children with CVI become adults with CVI.

This is, this is really good information. I, I, I appreciate you, you’ve open openly talking so much. Um, one of the questions that I had for you was from person to person. Can you even compare two people with CVI? It sounds like you really can’t, ’cause it’s gonna be so individual, how their brain’s interpreting what the environment around them is.

You’ve given some good examples of using the, the contrast getting down to those, those high, high contrast items, like even like using a dark plate with the rice or with potatoes or something like that. Do you read braille?

I was taught braille up to a second grade level. It’s not a skill that’s necessary for me.

I do use large print, however. The easiest font for me to read is 16 and 18 point font. I can read things much quicker when they’re in that font with less visual fatigue, less eye straining, and headaches. Instead of braille books, I found audio audiobooks and eBooks very helpful because you can access them in large print in a less expensive way.

I use the book share program. I don’t remember who runs that. And the NLS program, the National Library Service, the National Library Service is a great free program. I’ve been utilizing that since I was in preschool.

Do you use a screen reader?

Only sometimes I use voiceover on my phone if certain apps aren’t accessible.

When I am on my phone, I have an Apple iPhone, and so I have my accessibility settings turned on. I have large print and Zoom turned on. It’s on full brightness. But in my control center, I have the button readily available to reduce the white points. I have reduced flashing objects on, I believe it’s actually called reduced motion.

I have the, um, in the control center, the button for the magnifier, but even with the large text on some apps still don’t have that, and they aren’t accessible. So I use a voiceover in some cases and I utilize the alt text and image descriptions on Instagram. In some cases, I. I’ve used an app that now I can’t remember the name of it.

Where you can, um, video call people and they will help you find things or read things.

Have you used Aira yet?

No, I’m not, I’m not sure what that is.

It’s a similar one to where you’re talking about the seeing ai, but it’s one that a lot of of stores are using now. So I know, um, where I am, the Wegman’s Grocery market has it. I think Target uses it.

There’s some others where when you go into the store. You log into to the Aira app and there’s a live person on the other end who uses the foot, the camera on your phone to help you navigate the store, and so you can tell the person what you’re looking for. They’ll help you walk through and can even compare items in front of you in real time while you’re there.

So if you’re shopping in the produce and you want a green apple, they can help you look to make sure there’s no bruises on the one that you’re holding. When you’re buying it or if you’re trying to find, um, a size large and, and a shirt, they can, you know, as you’re holding it, they’re able to, to look through the camera and look at the different items that you’re holding to help you navigate through that.

I haven’t used it myself, but I’ve done some research on it and I really like the idea of, you know, if you’re not able to take someone with you, to have someone there in real time who can help you with that, and I appreciate some of these stores are paying to have that. That service for you.

That’s very cool.

I’ll have to check that out. Thank you.

Oh, sure. I’ll, I’ll, I’ll send you what I found about it and then you, you may have some other stores there. It’s something we probably should do a segment on the, on the podcast about it just to, to let more families know about it. Listeners, I’ll put that list in the, in the show notes so you can see what, what, what all the resources are.

And we’ll put links for all of the ones so that you can go to their websites to find these too. So Ally, on the, um, we’ve already given them some just by listing this, but do you have any other resources that parents might wanna look into, either specifically for CVI or just that you found useful for yourself between school getting ready for, for life as an adult, things like that?

Is there anything that stands out for you that we could pass on to parents?

I don’t know of anything specifically for CVI. Not to say that there’s not anything, I’m sure there is. I believe this one is either for ages birth through 21 or for ages three through 21. But the Seedlings Book Angel program, that one is pretty great.

It’s through seedlings and it’s free Braille books every year. You get to choose, um, I believe five free Braille books. They also, they have a couple other braille programs through seedlings, but that’s the one that stood out to me. We utilized that when I was younger. NFB runs a free white cane program.

If you can’t afford a white cane, that’s a good program to reach out to for developing orientation and mobility skills for your child. But when I was younger, except for my first white cane, we got mine through Ambu Tech. When they started coming out with the cool colors, I always begged my mom to get a new one.

Before we finish this, I want to, um. To go to a segment, we’re going to start for season four called A Day in the Life. And Ali’s agreed to answer a couple questions here. So we, I thought this be a good way, listeners for you to get to know our, our guest that’s on, but also, um, get a little more advice of, of what you might.

Want to learn about to help your child. So, um, so Ally, if you could explain to us maybe what a typical morning routine is for you.

Yes, so I’ll wake up anytime between six and 8:00 AM I’m aware that that’s a very wide range, but I don’t work, I have multiple disabilities, so I have a feeding tube. I’ll disconnect that as soon as I wake up and flush the feeding tube and get my meds ready for the feeding tube.

I have a home health nurse that is here four to five days a week. I’ll usually wait for her to arrive for me and she’ll do my meds for me, set up another bag for my feeding tube, and my mornings are quite different after that every day. I don’t really have a set schedule. I’ll do your typical morning routine of getting dressed, doing hair, brushing, teeth, all your self-care things.

Ally’s gonna be on the on as our, as our guest for the next two weeks as well. So you’re gonna hear more about some of what she’s talking about.

Yes.

That kind of gives us a start there. What are, um. Let’s see. I wanna ask you one more. What’s one of the biggest challenges that you face visually during the day, or more often than not during the week?

This may not be directly answering the question, but because I’m considered legally blind, I’m not able to drive, and so I would consider that the biggest challenge overall. Being 21 and not being able to drive is quite difficult. When my friends got driver’s licenses when they were 16, that was different.

Um, I got a state ID, they got driver’s licenses. So whenever I want to go somewhere during the week, my options are. To walk the short distance. Not really walk because I’m an ambulatory wheelchair user, but, um, and I live in a walkable town, or to get a ride from someone, which is typically my home health nurse or my mom.

And I can’t, and someone isn’t always available to drive me where I want to go, but another visual challenge for me is reading the things I need to read. Information isn’t always available in an accessible format. I think one of the hardest things for me to read has to be debit cards. That’s probably a silly one, but debit cards are not made to be accessible.

Even if the lines are raised on them. There’s not enough contrast and the numbers are quite small. Honestly, I could fix this and just write down. All the information for my cards, but I haven’t gotten around to it. I suppose if we expand on the money concept, whenever I’m out in public at a store, a restaurant, anywhere that requires paying with a debit card or a gift card.

The machines that you pay on, there’s always a different spot to tap or slide or insert your card, and it’s not very clear where you need to do that. Sometimes you get judgmental looks from the cashiers and I’ll feel like an old person not knowing where to do it, but they’re all built different, the screens on them, where you ins, where you type your pin or sign or.

Everything you do on the screens aren’t high contrast, and there’s not a lot of lighting on them. So that’s a very inaccessible part of life for me. It seems small, but it’s frustrating. I.

Those are some of the things that my daughter and I talk about that the inconsistency makes it hard because you would, if it, especially, most of those payment machines are made by the same company, so I don’t understand why they’re not all the same, but, but you’re right.

Ally, thank thank you for sharing all of this. So we’ve really appreciated you coming in and. Being so open about about your life and about what you’ve learned and what you can share with us. But before you go, tell us what you’re doing right now and the best way that parents can get in touch with you if they have a question.

I am an ambassador with the Muscular Dystrophy Association for the second year. Our next project that we’re working on is the Shamrocks campaign. To support MDA summer camps. If you would like to get in touch with me, my Instagram is @advocatingwithally.

Alright, great. We’ll, we’ll put your, your contact information in the show notes and um, if you can get me a link to the MDA event, I can put that link in the show notes as well.

Okay. Thank you.

Listeners next week we’re gonna be talking more about her role as an MDA AMBA ambassador. So be sure to join us again, um, for the next episode. And until then, thank you for being with us today.

Thank you.

I hope this conversation has provided you with a deeper understanding of CVI and given you some valuable takeaways, but Ally’s story doesn’t end here. Join us again next week as Ally returns to Water Prairie to share her inspiring work as an ambassador for the Muscular Dystrophy Association. You won’t want to miss hearing about her advocacy and the important initiative she’s involved in.

I’ll see you then.