Q&A
What it’s like to grow up with CVI and dyslexia
Tina Caruso, an adult with CVI and dyslexia, reflects on her diagnosis journeys with both conditions in this Q&A style interview.
Many people 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: People with CVI often have multiple diagnoses. Sometimes, it takes confidence, attentiveness, and perseverance to tease them out.
That’s why we’re sharing personal stories from people like Tina Zhu Xi Caruso, a college student balancing both.
Tina was diagnosed with severe dyslexia as a six-year-old, struggling to read while having blackouts and meltdowns without knowing why. At 19, more than a decade later, she was also diagnosed with CVI; only today, at 26, does she fully understand the origins of her reading challenges.
Happily, she’s now a senior at Massachusetts College of Art and Design, majoring in photography; she hopes to become a photojournalist.
Here’s what she wants others to know about her dual diagnoses.
Did you like books as a kid? What was reading like for you?
I loved reading, because my mom read to me! At six or seven, I started reading Laura Ingalls Wilder with her. By age 10, I was reading “Little Women” by age 10, “Jane Eyre” by 14 years old and other books that weren’t meant for my age — if my mom was reading it to me.
What was your experience like with dyslexia and undiagnosed CVI? Could you explain what your world was like, when trying to access books or access words?
Letters were pictures: D was a C backward with a lower case L, a long block. This method of learning how to write letters is used regularly in teaching Handwriting Without Tears. I literally had to memorize each letter like it was a picture via this method. But I had no idea what they meant or what they were: Words were consonants and vowels, without meaning or sound.
I had no hope. I wondered: Would I let my severe dyslexia win and take over my life? With the right reading teacher in middle school, words finally became consonants and vowels, with meanings and sounds.
You had no reference points. It must have been tiring. What was this process like, emotionally?
I had lots of CVI meltdowns. I was the angriest kid in class! In Kindergarten through second grade, these meltdowns were tantrums. By middle school, my meltdowns were silent. When they would happen, I’d just see black.
What sort of book access did your school offer? I know your mom would read to you, but what did you do in the classroom?
We didn’t even know that I had a vision impairment. They kept telling me it was “just” my dyslexia, and they kept giving me books that I could actually not read, because I can’t read Times New Roman font 12. Larger font just doesn’t help some people with CVI — but that’s all I had, throughout my schooling.
By ninth grade, the iPad was a savior. Once technology started coming out, I used audio apps like Bookshare. By college, I began to read in 20-point, Arial font. I do feel, had I gone to Perkins for at least three years, I might have learned Braille. I might have learned more skills that could have made it easier for me to try to thrive as a college student.
Could you share your CVI diagnosis story?
By 2012, we knew something was wrong, so we went to Mass Eye & Ear. They said I had learning disabilities. Nothing was wrong with my eyes, except for nystagmus.
Then, we went to Children’s Hospital in Boston, and then to a vision therapist. We were becoming traumatized. We then consulted Perkins in 2018, before I went off to college. That’s when Dr. Nicole Ross had the confidence to flag me as having CVI. She was more confident than any prior doctor.
How did it feel to finally get that diagnosis?
At first, I had no idea what CVI was. I’d always wondered why I struggled in ways that could never be explained by dyslexia. If I was having a CVI blackout, when reading a page — a page actually would go black! — it was actually because my vision was overwhelmed.
But I had always been told it was due to dyslexia. I did not get the correct help in high school. It’s just very frustrating for me that people don’t take CVI seriously. It is mind-boggling how many CVI’ers we could find, if we’d just listen to their stories.
Knowing about your dual diagnosis now, are there certain symptoms that come from dyslexia and others distinctly from CVI?
When I read aloud, I see black: I know that CVI makes me black out to the point where I’ll lose track of where I am on a page. Some of my less severe symptoms mash up between dyslexia and CVI, and sometimes they work together to make reading a nightmare.
With dyslexia, sometimes I’ll be writing sentences and skip words — and I won’t recognize that I did. My brain has so much to say; I won’t realize it. Then, when I go back and edit, I can’t actually even see the skipped word, because of my CVI. It’s a hilarious process. It should be an “SNL” skit: a CVI dyslexic trying to write a paper and edit it themselves.
How are you doing now?
I learned the Wilson method. It was an a-ha moment: Wilson makes sure you memorize every single sound, vowel, and everything. This has helped me, probably, with both CVI and dyslexia.
I was told that I have severe dyslexia, but I think I have moderate or mild dyslexia on top of how CVI made it impossible for me to read. I have an inability to match pictures to words in a matter of seconds.
Still, every time I want to read aloud, it feels like my CVI is saying: “What are you trying to do? I don’t know that word. I don’t remember where I saw that.” It’s just so confusing.
And, sometimes, I do get visual field loss when I’m really stressed. My lower field of vision got so much worse during the pandemic, due to wearing masks, which reduces visual field anyway. I don’t know if it’s going to return.This still happens – for instance, I’ll miss things on the lower half of a professor’s syllabus.
What are your dreams? I know you want to be a photojournalist.
I’m one of the few students with vision loss ever to attend Mass Art. Photographs are my words. As I wrote in my senior thesis: “Paralyzed and dazed. I turn to art. I express myself. The words I can’t articulate. The memories I can’t explain.
Photography is a beautiful language. That some people don’t understand. It’s a way to express the things I can’t explain. It’s a way to visualize things I can’t describe in my brain. It became my voice when I couldn’t find my own.”
What do you love visually? What do you love to take pictures of?
Anything. Everything! Last night, I took photos of the aurora borealis, the Northern Lights. (Learn more about Tina’s art.)
I love that. Do you have any words of comfort or hope for people who might recognize themselves in your story?
Teachers need to understand how CVI could cause more reading issues than people think. It could be severe dyslexia, but it also could be moderate or mild dyslexia with CVI.
Having CVI doesn’t mean a child isn’t intelligent. It’s all about the access the CVIer has in the classroom.
To kids: Keep doing what you love, and find safe teachers who understand you. I really did have teachers who tried to help me.
