Video
Cerebral palsy and CVI: A community discussion
Watch our webinar with CPARF, Dagbjört Andrésdóttir, and more about the astonishing overlap between CVI and cerebral palsy.
In July, we helped our collaborators the Cerebral Palsy Alliance Research Foundation host an hour-long panel about the astonishing overlap between Cerebral/Cortical Visual Impairment and cerebral palsy. Jocelyn Cohen, the Vice President of Education at CPARF, posed questions about the intersections of CVI and CP, including the average diagnosis timeline, and where to find support for CVI and CP diagnoses into adulthood.
Dagbjört Andrésdóttir, an adult with CVI and cerebral palsy, returned to the virtual CVI Now space to share her answers to those questions, along with personal insights about living with cerebral palsy and CVI—from navigating her environment to navigating the medical system with the most common motor disability and a misunderstood visual impairment.
Joined by disability parents Ali Mahady, Rachel Bennett, and Lacey Smith, the full panel exchanged ideas, answered questions in a live Q&A, offered community resources, and more.
This conversation focuses on personal and anecdotal experiences. The presenters are not medical providers and do not give medical advice, but the full panel offered strategies that work for them. Our goal for these conversations is to help inform needed research in the fields of CVI and cerebral palsy.
Below are excerpts from our lively, collaborative community discussion.
Difficulties with diagnosis are common
Dagbjört: So I was born 2 months prematurely with periventricular leukomalacia (PVL), which is the cause of both my CVI and my CP. I was diagnosed with CP at a few months old, but my CVI diagnosis came in 2018, although I was born with both conditions.
Jocelyn: What was the thing that precipitated your diagnosis? Did you have a specific experience that kind of pushed doctors over the edge to give you that diagnosis? Or did you have to sort of you know go through a bunch of different doctors to get the answer that you need?
Dagbjört: It was my mom, who was a teacher. She was working one day, and there was this kid who came to the school that had been diagnosed with CVI. And my mom had to go for a meeting to learn how to help the kid go through school. And then she realized that this kid ticked all my boxes.
So it was like a light bulb for her. And so we went to the doctor, and nobody believed us. So it took another year to force or persuade the doctors to refer me to The Blind Association. They just did it because Mom told them to. They didn’t want to, themselves. So it was pure coincidence.
Jocelyn: We love a great parent advocate and I’m so glad that your mom was able to persevere with you and get you the information that you needed.
When did you change your perceptions around your child’s experience with CVI? Did you have an experience similar to what Dagbjört experienced?
Rachel: My son Henry’s CVI was missed until he was five and a half. So Dagbjört’s story is unfortunately common in the CVI world—although it’s getting better. Providers thought he had a mood disorder or severe ADHD. We know behavior is communication, and his behaviors clearly communicated that he was trying to survive in a world that isn’t designed for him. So I spent five years being his mom, not knowing how much he was on the blindness spectrum. His opthalmologist was also very dismissive, even though he also has ocular conditions. The system that was set up to guide us really is not set up to fully understand and serve people with disabilities.
As parents, we get a hard lesson right away with our kids. And I’m just grateful for adults like Dagbjört who share their stories about CVI and their experiences. I also learned from adults of CVI that there are so many different ways to access the world and that I need to take my child’s lead.
You don’t realize how insidious ableism is. It’s a hard journey to unlearn that and realize how to take your child’s lead and observe what’s working for them.
I realized that he was such a tactile learner. Once I learned how to take his lead and observe all of his compensatory skills, it really started unlocking his gateway to learning. Now he’s on a path to being a reader, writer, and problem solver because he has a multisensory approach and uses both print and braille. He uses vision when he wants to. So it’s been freeing and empowering for me as a parent. As an advocate for him and every space that he’s in, I advocate for his autonomy and agency.
Ali: Similar to what Dagbjört said, we know that some of the common causes of CVI are also the common causes of CP — things like lack of oxygen to the brain, or stroke, or infection, fever, damage to white matter. And we also know, as Dagbjört said, from literature, that kids with CP are more likely than not to have CVI. There’s different studies out there, but there are lots of different research studies that show we’re seeing between 50% and 70%. But we also recently saw something from CPRN (Cerebral Palsy Research Network) that said up to 87% of children have CVI with CP. The work that we partnered with McKinsey and Company with at the CVI Center last fall, the 180,000 kids that we found in the US, at the the base of that is 65% of those also had CP. So we’re we’re constantly seeing that there’s a large portion of the CVI community having CP.
Jocelyn: What are the challenges of diagnosis? Related to that, can you explain diagnostic overshadowing and how it increases the average age of CVI diagnosis?
Dagbjört: CVI is still taboo. Professionals aren’t taught about it. What they learn is how the eye itself is constructed and how it helps us see. That’s only half of the story. Up to 60% — 60% of our brain is dedicated to vision. In most cases, the professional never believes that a CVI is a thing, even if there are obvious visual difficulties.
For those born with CVI, we just think our vision is typical until proven otherwise. This denial from the professionals, and even family or friends, can cause a lot of trauma and anxiety about the diagnostic overshadowing.
CVI is incredibly misunderstood
Dagbjört: Looking is entirely different from seeing. Looking is the muscular movement of the eyes to the target, but seeing is where the brain actually recognizes it. So those are two different things.
Rachel: Exactly. Looking does not equate to understanding, and that’s really powerful to understand in the educational world, as well. Our educational system relies on visual instruction, so understanding how what access looks like for kids with CVI and other low vision conditions is paramount.
Dagbjört: People who aren’t exactly in the field of CVI or don’t have CVI think of being visually impaired or blind as an on/off thing: Either you have absolutely no vision or you have 100% vision, but this is a spectrum. So, I wanted to comment on what Rachel said about how Henry uses his vision when he wants to. We always want to use our vision, but we rarely can. So he uses the vision when he can, not when he wants to —because he always wants to.
Take, for example, my music school. They didn’t follow my CVI diagnosis as I got it… They kept forcing me to use my vision, which resulted in more than one occasion of me getting sick during lessons. I mean, physically sick. It took everything. One lesson [of me] trying to use my vision for no more than 10 or 15 minutes caused me to be bedbound for three days. So this is the energy we have to use to try to use our vision. Isn’t it best that we use an alternative method so we’re not feeling sick?
Jocelyn: I see a real parallel there in the CP space, where there’s a focus on walking independently, or just walking in the first place, and how walking can take so much energy out of a person. If they are sometimes an ambulator and sometimes use an assisted device, but they’ve been taught about how important it is for them to be able to walk, their pride, might overtake the utility of the situation. Right? And they might walk because they’re proud that they got to that point. But then, if they’re trying to walk, let’s say, to a baseball game they really wanted to go, they’ll use all their energy to get there and then pass out and miss the baseball game. But if they use the wheelchair, they’ll beat everyone to the seats and then be able to enjoy why they got there in the first place. There’s lots of overlaps there. I mean, it causes different kinds of issues but I just see real parallels.
Dagbjört: You’re correct.
Jocelyn: What’s the data on visual processing and CP? Where are the overlaps between that and CVI?
Dagbjört: As I said, I’m not an expert and I can only speak from my personal experience because nobody with CVI sees exactly the same way. We are just like fingerprints. There’s nobody the same.
So I’ve heard two things: One is that up to 70% of people with CP also have CVI and another is that up to 90%, all depending on how much the doctors are informed about CVI.
When we think about overlaps, I can only speak for myself. As a child and teen I was said to be clumsy, which was said to be caused by my CP and motor issues. But CVI, just like other visual impairments, can affect somebody’s ability to move or get around. The motor issues in CP weren’t alone in making me clumsy. Also, many of the causes for CVI can also cause CP, for example, lack of oxygen, or a stroke whenever in life, and the list goes on.
Jocelyn: Thank you for sharing that. That’s all really helpful information. And I like to say that we’re experts in the ways that our disabilities affect us, even if we may not be scientific experts.
Whatever decision you make, you’re armed with the information that you have at that time. Regardless of whatever comes out of that decision, you made the right decision because you made it based on what you knew at the time.
– Jocelyn Cohen
You can’t know what the future is going to be like. You can’t know what other information and research is going to happen. You have to make decisions for your child.
Even as an adult when you’re deciding what treatments to do, what therapies to do or not do, how to pursue different management options for your disabilities, you’re making the decision with what you know. It may or may not be the right decision in the future, but it’s the right one at that moment.
Jocelyn (question from the chat): Does CVI progress over time? Is it possible that everyone with CP has CVI?
Rachel: For some, it might. But I think it’s really important to understand that with comprehensive educational assessment, we’re able to learn the conditions, the accommodations, the supports, the environmental adaptations that make vision use possible. But once those conditions are removed, what does vision use look like?
We may see visual progress under very specific conditions, but in an inaccessible environment and with inaccessible materials, CVI is going to rear its head.
You might see some improvement, but there’s always a need. CVI is lifelong.
Dagbjört: A lot of people that I’ve come in contact with think that [vision] therapy might help, but that’s wrong.
Jocelyn: It goes back to what Rachel was saying about ableist attitudes in the world.
Lacey: My daughter’s name is Savannah. She’s 13, and she has a rare genetic disease, including epilepsy. When she started having epilepsy again, around the age of 7, that was a really hard year for us.
My perspective has shifted on how to best support her. As we talked about before, with the whole multisensory [approach]. So I do think there are times where vision can change, like more permanently, when there’s [brain] damage, seizures, or other things. But I don’t know that for sure — Those are just observations of my own world.
Jocelyn: Those really helpful because everyone has different experiences with whatever their disability or disabilities are. So the more we can highlight those, the more people can see other people’s experiences to help them throughout their lives.
How to tackle safe navigation
Irene (audience member, whose son Edward has CVI and CP): Is there any research or any tips to help with [crossing the street]?
Rachel: A big part of CVI is difficulty with processing motion, especially fast motion. It’s been widely reported from people with CVI that they can’t see moving cars, they can’t see people walking by them. My son would always walk right up to swings on the playground.
Irene: Yes, my son would walk into people too.
Rachel: And things might appear “out of nowhere;” it’s something called looming, like they’re walking through a haunted house, all of a sudden something shows up in front of them. So I wonder if that’s a big part of it, and that’s a big part of why people have difficulty crossing the street. Working with an Orientation and Mobility specialist is critical.
Irene: Yes. We’re doing that.
Rachel: They should really understand that, if they can’t use their vision to cross the street, what are all the other cues that they need to learn to be able to do that safely?
Jocelyn: He has to deal with that on top of CP, which makes it harder to step off curbs, harder to step over uneven surfaces. It has sort of a multiplier effect, I’d imagine.
Not having the white cane, for me, it’s life threatening.
– Dagbjört Andrésdóttir, adult with CVI
Rachel: Dagbjört how do you cross the street safely?
Dagbjört: Well, as a child and teen, it was deathly scary to even try to exit my home. It wasn’t until in 2018 when I actually got diagnosed and started white cane training. That is the only thing ever that has allowed me to cross the street.
Natanya (audience member with CVI): One of my biggest issues is I cannot see moving cars. I was almost hit and killed by a car and I didn’t see it. So here’s what I have to do: I have to have somebody help me cross the street. You can’t always depend on sound. Sound can do funny things if you’re going around a corner, if there are certain trees. if you are in either more rural, or if you are in certain situations where you cannot depend on your ears, plus the electric car. As a rule of thumb, I’ve been told don’t don’t cross the street by yourself. That’s just been my experience.
Jocelyn: Thank you Natanya, I appreciate that. That also makes me think— so I live in New York City and we also have electric bikes on the sidewalk, and all these silent things that I absolutely depend completely on my eyesight to keep me from face planting or being knocked backwards… Sometimes that doesn’t even work. I know sometimes people don’t want to have an obvious signifier of their disability, but I think it goes back to what Dagbjört was saying about the white cane. You’d hope that people on a sidewalk in an urban environment who whose vision is fine would get out of the way for someone with a white cane.
Dagbjört: Not having the white cane, for me, it’s life threatening, literally. You can be killed. It’s like not having the security belt on you when you’re driving. It’s exactly the same stuff.
Jocelyn: It’s a really important warning for people to heed and it exemplifies why it’s so important to have these conversations, because people know what they know and they don’t know what they don’t know. So by bringing folks together who have different experiences, you can learn and hopefully improve your daily life with your disability or disabilities.
Looking for more CVI resources, guides, tools, and services? Whether it’s learning something new, finding support, or meeting others in our community, we’ve got you.
- Lean in. Sign up for a 1:1 CVI Parent/Caregiver Support call.
- Find CVI community support on Facebook at CVI Now Parents.
- Explore our resources on cerebral palsy and CVI, when to suspect CVI, the CVI visual behaviors, and at-home strategies that can help your child access their world.
- Build your knowledge and advocacy skills with our CVI Now Early Intervention series and CVI Now IEP Guide.
- Read stories from other CVI families and individuals with CVI.
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