We have a love/hate relationship with reading in our house. But stories? There’s nothing but love for that.
Let me explain. I’ve read to Grace almost every day since she was born. It was our special bonding time and she always enjoyed the melodies of the written word spoken aloud. As she grew, stories became a window to a world that she couldn’t access in real time. Reading stories aloud gives us the time to pause, reflect, describe the visual in our heads, define a word, and so on…a luxury our fast-paced world does not afford us.
We’ve journeyed through a library of books and found treasure: A valuable collection of objects, environments and experiences for Grace’s personal library — her brain.
Children with CVI do not learn things incidentally. They may see what’s going on around them, but that does not mean they are able to interpret what’s going on around them.
So we have to be intentional. We use rich language to describe things for our kids with CVI. We build on familiar concepts, helping them make connections between the known and the unknown. This helps them build schemas, connected and organized information that they can retrieve and expand on later.
Grace had a first-grade teacher who explained schema-building to her students in an accessible way (She described it so well that Grace was able to give us this explanation one night after school):
Your brain has a bunch of shelves. The learning fairy flies from shelf to shelf and puts the things you learn in the right place to keep them organized. Then, you can go back to any shelf and pull that information when you need it.
While she adores listening to stories — and has gained so much from the experience in terms of vocabulary, grammar, perspective-taking, and worldly knowledge — reading can be a struggle for Grace.
This is understandable. Reading is difficult for CVI learners because it’s a complicated task. “We’re wired to speak, but reading must be learned,” says Judy Endicott, reading specialist and instructor of Literacy and CVI: High Phases II and III. “CVI learners have the additional task of recognizing and identifying the written symbols before they can convert them to the phonetic code. That is exhausting work.”
When I read it feels like my eyes are being pulled out from their centers. I have a hard time reading long passages, like when we have the end-of-grade tests, because my eyes get tired after about two paragraphs. A weird thing about this is I never get tired when I read numbers.
This does not stop me from reading lots of books.Grace, age 10, individual with CVI
She knows the rules of language. She can decode words. She has access to print materials modified for her visual needs. She uses a CCTV to read materials that have not been modified. She practices and practices. There has been great progress.
Yes, it is slow going. But she is learning and continuing to grow, so it is all worthwhile.
Thank goodness for audiobooks. Over the past year and a half, Grace has trained herself to listen to books at a faster and faster pace. She started at 90 words per minute (slower than the average speaker) and incrementally increased her speed, 5 to 10 words per minute at a time. She can now consume books at 525 words per minute.
She attributes this to her sense of hearing, which we assume is more acute due to her lowered visual sense. I’d add that the skill came with a lot of practice — and she gladly put in the effort because of her curiosity and love of learning.
We celebrated Grace earlier this school year for her voracious reading habits. Grace logged the most pages read out of all the students at her elementary school. The reward? A popsicle party and her accomplishment stamped in a school library book.
Some may complain that it’s unfair for Grace to listen while other kids read by sight. Some say this does not count as reading. What’s the point of this debate? The goal of reading is comprehension. To understand the world and gather new information. This is exactly what happens when she listens to a book. In fact, Gallant Lab researchers at the University of California, Berkeley, measured and compared the brain activity of subjects as they listened to and read the same story. The study results, published in the Journal of Neuroscience in September 2019, demonstrate that “the semantic representations evoked by listening versus reading are almost identical,” bolstering the case to offer audiobooks to a student who struggles with reading.
Others question whether she can really listen at such a rapid pace. I questioned it once. Grace’s response: “Mom, would I really sit here for hours on end if I wasn’t getting it?”
Additional evidence of comprehension: She can summarize the story and she laughs at all the jokes that, of course, no one else in our household can catch before the story moves to the next line.
A bonus? Listening to a book first can make reading by sight a smoother experience later.
We get audiobooks from a variety of places:
Books have been an important conversation starter in our home. We’re thankful for a few books in particular, which feature the perspectives of fictional characters who have a disability.
We highly recommend these for students who are able to access chapter books. Here’s our review of each:
The Miscalculations of Lightning Girl, by Stacy McAnulty
In second grade, Lucy gets struck by lightning that results in a brain injury. She becomes a math savant who is able to do massive calculations in her head. She also acquires obsessive compulsive behaviors, like an elaborate ritual before she takes a seat. She is homeschooled until sixth grade, which allows Lucy to hide her abilities— until her grandmother decides it’s time to experience public middle school. It’s a story of making friends, embracing our abilities (and our quirks), and the journey to self discovery.
Out of My Mind, by Sharon M. Draper
Melody, a brilliant young woman with cerebral palsy, yearns for more. She has information and opinions trapped in her head and she is unable to verbalize them. She feels frustrated that she must rely on her parents, her neighbor and her aide at school to help her with physical daily activities. And, more than anything, she wants to learn alongside her peers in an academic setting. Her new, trusty AAC (who she names Elvira) makes all the difference. Now Melody can express herself with words — which brings both opportunity and heartache.
Out of My Heart, by Sharon M. Draper
The sequel to Out of My Mind follows Melody to summer camp. It’s a growth experience for Melody, exposing her to new people and activities. In just a week, Melody learns that she can do anything, including ziplining and riding a horse!
Roll With It, by Jamie Sumner
Ellie and her mother must move to a small town in Oklahoma to care for her grandparents. Moving is difficult for any middle schooler, but Ellie’s mom is particularly worried that her rural hometown will not have the services her daughter needs because Ellie has cerebral palsy and travels in a wheelchair. But with the help of new friends who are also searching to belong, she falls in love with her new home.
Tune It Out, by Jamie Sumner
It’s ironic that Lou has a gorgeous singing voice, yet finds sounds incredibly overwhelming. She is also sensitive to touch. Lou has sensory processing disorder. A big move to live with her aunt helps Lou discover her voice and a renewed appreciation for music.
Wonder, by R.J. Palacio
This is now a well-known book and movie, celebrated for its emphasis on inclusivity and kindness. It’s a heartfelt book that showcases kids building empathy and resilience. There’s a picture book available for younger readers and a sequel called Auggie and Me, written from the perspectives of a bully, a classmate and a friend.
The Insignificant Events In the Life of a Cactus, by Dusti Bowling
Aven has a big imagination and uses it to make up all sorts of stories about how she lost her arms. In reality, she was born without them. When she moves to Arizona for her parents’ work, she makes a new friend who also has a disability. They bond and uncover a mystery to be solved.
And for the audience who prefers a snack-sized story:
My Three Best Friends and Me, Zulay, by Cari Best
A picture book about an elementary student who believes in herself, even when being blind makes school difficult. Zulay does not enjoy standing out from her peers, whether she’s using Braille or a white cane. However, she comes to realize that standing out can be great, especially when you prove to yourself that you can run a race!
Jessica Marquardt is a CVI mom to Grace, the creator of Kaleidoscope: The CVI Podcast, and works in marketing and communications for a major software company. Jessica is a fierce CVI advocate, a life-long learner of CVI and the brain, and undeniably knows that storytelling has the power to change the world for individuals with CVI.