Article
Understanding dyslexia in kids with CVI
Mason's mom, Kira Brady, shares her advocacy strategies for a CVI and dyslexia dual-diagnosis triumph and perseverance.
Many kids with CVI have co-occurring conditions, such as autism, cerebral palsy, and dyslexia. The right diagnosis is nuanced and sometimes elusive, because CVI can mimic other neurodevelopmental conditions.
In particular, CVI and dyslexia can overlap. It makes sense: The visual processing struggles unique to CVI can resemble language-based learning disabilities because they affect word recognition, reading, and comprehension. CVI doesn’t cause dyslexia, but it can complicate how it manifests in kids with both conditions. Learn more about the current definition of CVI.
Remember: Kids with CVI often have multiple diagnoses. That’s why we’re sharing personal stories from caregivers like Kira with kids like Mason, who has CVI and dyslexia. Sometimes, it takes confidence, attentiveness, and perseverance to tease out these diagnoses.
Kira has experience navigating both worlds, and she often shares her experiences for CVI Now. Here’s how she balances advocacy for Mason’s dyslexia and CVI—with a reminder that both are visual conditions, both are ongoing conditions, and the accommodations should never stop. Neither does she.
How to listen to your instincts
We first suspected Mason had CVI when he became mobile. He would walk over toys as if they weren’t there. He didn’t see things that were underneath him. He would walk into doorways or even walk directly into walls. Those were our early clues.
Our radar was up in preschool. By age four, Mason hadn’t learned letters or letter sounds, despite working on it in his integrated classroom and at home. He’s a smart kid: He knew what kind of backpack every kid in preschool had and what color car their parents had. He could tell me, at the end of the day, what color shirt his teacher was wearing. I couldn’t understand the disconnect between his intelligence and ability to grasp complex ideas, and his struggle to learn even the letters in his name.
Strangely, I have two strong literacy-linked memories from pools. I remember when my daughter was 18 months old. We were at a YMCA pool, and it had big black letters on the side that tell you how deep it is. She pointed at them and started singing the alphabet song. I just had a moment of: “Dang girl! You know that those are letters.”
With Mason, when he was five, we went to a hotel hot tub—and there were the same letters. Mason pointed at them. He recognized them as letters. But: He was five. That was the difference. CVI had delayed Mason’s ability to recognize letters in his environment, and to gather the natural awareness of text that sighted kids tend to gain naturally.
CVI had delayed Mason’s ability to recognize letters in his environment, and to gather the awareness of text that sighted kids tend to gain naturally.
Kira Brady
Sensing the disconnect and taking action
We homeschooled Mason for kindergarten due to COVID, and we had an amazing TVI who came to our house. She was working super hard on literacy. And even she said, “You know, I think something else is going on here. He understands science and photosynthesis. But he’s not learning letters!”
There was just a huge disconnect.
Essentially, we knew we had a really smart kid. We were proactive. We had a fantastic TVI. We were making learning accessible. But despite knowing he had CVI, he still wasn’t learning in this specific literacy area.
Mason was frustrated, too. He wanted to read. I have a video of him looking at one of his favorite books, with a lot of rhymes. He was getting the lyricism and the rhymes, sitting there, pretending to read it, with maybe a few relevant words that he knew from listening. This was actually a beautiful moment, when I realized that Mason had acquired many pre-literacy skills from me reading to him regularly. I didn’t expect him to magically learn to read full sentences overnight, but I knew that we had provided a literacy-rich environment. The fact that he wasn’t learning letters or gaining print reading skills meant that something else was going on.
That’s when I sought out a full neuropsychological evaluation. I had suspicions about dyslexia and also wanted someone who understood non-neurotypical brains, even if they didn’t already explicitly understand CVI.
Finding a diagnosis, and cultivating perseverance
There are long waiting lists and insurance issues with neuropsych evaluations. We were lucky that we could partially pay for the evaluation with our HSA.
To find an evaluator, I basically looked up providers in our area and paid careful attention to their “about me” sections; I looked for a provider who used the terms “brain injury,” or “cerebral palsy,” so that I knew they worked with kids like mine. I also made sure, however, that the provider specialized in dyslexia or in language-based learning disabilities. I always have my CVI hat on, and I wanted to make sure that I wasn’t going to sway someone into viewing Mason only through the CVI lens.
Eventually, Mason was diagnosed with profound dyslexia and dysgraphia, which go hand in hand. He also is diagnosed with mixed expressive and receptive language disorder (MERLD), and dysarthria, a speech disorder that makes it difficult to pronounce or form words. There were multiple language-based learning disabilities, and so the intervention would need to be aggressive.
From diagnosis to classroom strategies
After that, Mason started first grade in a co-taught inclusion classroom with a special education teacher and a general education teacher working together, which was amazing. He entered first grade knowing only the letters in his name and arguably no letter sounds.
Fortunately, he also started intervention specific to dyslexia using the Wilson method, which is science- and research-based. Wilson was especially great for him. It is explicit, repetitive, and designed for people with dyslexia, and it also uses a lot of consistent pictures and symbols. His special education teacher further individualized the work for him by using color coding, light boxes, and allowing him to use large, hand-held cue cards, rather than small, photocopied cues.
At the end of first grade, Mason could read a little bit, mainly simple CVC words and a few high-frequency words. He knew all the letters, all of the letter sounds, and some blends. His progress was incredible. When the intervention was finally appropriate, he took off.
Most researchers say dyslexia is a phonological-based learning disability. There is a school of thought that says it’s a vision-based learning disability. For Mason, there’s absolutely a phonological component. He did not know letter sounds, struggled with rhyming, and had a history of speech delay: These are all warning signs for dyslexia.
What to expect from schools
Here’s what I’d like other people to know: Your school district is not going to diagnose dyslexia. They’re not going to say “dyslexia.” Instead, they’re going to say, “Language-based learning disability.” Another term you might hear is “specific learning disability in reading.” This also means dyslexia. That’s where the specific diagnosis with a neuropsych evaluation comes in, which I think is so important.
I understand, however, that this isn’t accessible to everyone. You can still get the services you need. It just takes a little bit more advocacy in terms of telling your school, “I want a full educational assessment for my child,” and fighting that fight.
Meanwhile, CVI is so misunderstood. A lot of people have never heard of it, or don’t know how to accommodate it, or don’t recognize when that’s what’s holding a child back. As parents, we all have our CVI hat on—again, which is part of why I sought out a neuropsych provider who understood dyslexia. I needed a person to check and balance me, because I was always fighting the CVI fight. What I found is that our school district is fantastic at providing intervention for dyslexia, but not everyone always understands CVI.
Making progress, with caution
Today, Mason is in fourth grade. His language-based learning disabilities now impact him more on a day-to-day basis than CVI, especially in school.
But, honestly, the kid has blown us all away. He’s already met this year’s IEP goal for reading. Now, he’s being progress-monitored on a fourth-grade reading goal, which is amazing. They monitor progress using words per minute. It’s lower than a goal for a typical fourth-grader, but still: It’s a goal that’s based on a fourth-grade text, which is huge. He’s also receiving additional specific intervention for oral reading fluency, as this is an area of relative weakness because of his speech diagnoses.
Here’s the thing: Both CVI and dyslexia require work. For Mason, using vision is effortful. Reading is effortful. Put the two together, and he can do it, and he’s doing a fantastic job—but he’s tired quickly. When it’s the first time that he’s read a text, he makes a lot of errors.
Fluency homework helps. He reads the same short text every day of the week. He reads it Monday through Thursday, which has been a game-changer in terms of oral reading skills and learning new words. The whole week, he keeps reading the same text, over and over. The first time through, he struggles. We highlight words that he stumbles over. Usually it’s a new word, or it’s a word that’s really similar to a word he already knows, so he maps that word onto what he’s seeing. Highlighting is enough of a cue for him to pause and really examine what that word is, before he says it. By Thursday night, he’s got it.
Embracing tech tools
I’d also like people to know that, in elementary school, a lot of books are pretty accessible. The font is big, the chapters short, and the lines are spaced further apart than books for older ages. He can access things like Bookshare and Dolphin EasyRead, but he doesn’t use them as much. Mason doesn’t want to be different. Right now, he’s reading from the same print books as his peers. But that’s not going to last in middle school and high school, when fonts get smaller. One goal that his TVI and I set this year is to get him to be more willing to use those tools.
Next year, middle school will be a whole new world in terms of thinking about both CVI and dyslexia. Mason hasn’t needed much in the way of O&M services, but we anticipate that he will work with his O&M regularly over the summer to learn to navigate the new building and a schedule that involves changing classrooms. I will be advocating for an exception to the foreign language requirement, because it simply does not make sense to burden him with learning a second language, when his effort should be spent on continuing to develop skills in his native language.
I also expect that he will need to rely more heavily on technology, including digital texts or e-readers. As assignments become more complex, I think he will need help reading instructions and understanding what is being asked of him. There are small things, too, that most might not consider. His daily schedule will need to be bigger than usual. He’ll likely need an alternative to the rotary combination lock used on lockers, as the small numbers and left right directionality can be difficult for someone with CVI, dyslexia, and fine motor challenges.
Advocacy advice for proactive parents
Keep a “CVI dossier.” Here are all the texts that I’ve read; here are all the workshops that I’ve participated in; here is all the training I’ve completed. Without being cocky or aggressive about it, I let his educators know that, aside from the TVI, I’m also the CVI expert in the room. It helps to have it in print: “Here’s all the work I’ve done. I’m not just speaking as a parent. I’ve educated myself on this.” I provide that to all of his teachers at the beginning of the year, and with it, I send a brief history explaining where he is now and what’s most useful for him.
It’s helpful to press for 10 hours of consult services per year, stacked at the beginning of the year, in his IEP. This is time for the TVI to communicate with the teachers and train them on things.
We made sure that it could be stacked at the beginning of the year so the TVI would be spending maybe an hour a week with Mason and an hour or two a week with consult services: prepping materials, showing his teachers how to make accommodations, spending time with them. Once they get to know Mason, the time could fade, because the teachers know how to make the accommodations for him.
But dyslexia doesn’t go away. It’s a learning disability that he will have forever. CVI doesn’t go away, either. CVI is a vision impairment, and print reading is a visual task. Sometimes I find myself having to say: “Mason will still need accommodations, because this is a visual task, and he is visually impaired.”
Confidence, on Mason’s terms
Today, Mason has a great friend group. He does struggle a bit with confidence and, again, he doesn’t want to use certain accessibility tools. Sometimes, there are things he misses or doesn’t understand, and he won’t tell anybody because he doesn’t want to seem different. Other than that, I think he’s doing exceptionally well.
For years, he used to say, “I can’t read, I can’t read. I can’t read.” Right around second grade, it started to shift. He’d say, “I’m learning to read.” And now, he considers himself a reader. He says he’s good at reading—and that’s been awesome to see.
I think the most important takeaway is this:
If your child is struggling in all areas, especially in the early days, it could be because of CVI.
If your child is struggling in all academic areas once they’re in school, it could still be because of CVI, or there could be an intellectual disability.
But if your child is only struggling in reading—despite vision accommodations—or struggling much more in reading than in other areas, that’s when you should suspect dyslexia, because it’s specific to literacy.
Learn more about dyslexia in CVI and other low vision conditions
- Understanding Dyslexia in Children with Visual Impairments
- Global visual selective attention, or the ability to integrate multiple visual elements of a scene, in children with CVI, ADHD, and dyslexia
- Eyes on CVI: Eye movements unveil distinct visual search patterns in Cerebral Visual Impairment compared to ADHD, dyslexia, and neurotypical children
