Author: Stephanie Kung

Resolutions + Resources

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Welcome, 2023! Wow, it’s been awhile since I’ve created new content – so if you’re still following along I sincerely thank you. I posted a few things throughout 2021 and 2022 on the blog’s corresponding Instagram and Facebook pages, but for the most part I’ve been focusing my time elsewhere since the end of 2020.

But it’s a new year! And while I’ve never been big on new year’s resolutions, my life as a “medical mom” keeps me so busy that I doubt I would ever find the time to share more of our everyday CVI strategies unless I make a conscious effort to prioritize doing so. In 2023 I’m resolving to do just that!

The landscape of available CVI resources has changed drastically since I first launched Everyday CVI, so let’s kick things off by highlighting a few that have become my “go-to”s in recent years! Whether you’re new to a CVI diagnosis or have been navigating the blind/visually impaired world for awhile, I hope this list is helpful to you.

My Go-To CVI Resources

Please be sure to check out The CVI Scholarship, run by CVI parent Kira Brady. By selling merchandise that celebrates CVI and neurodiversity (shirts, mugs, tote bags, etc.), The CVI Scholarship provides financial assistance to families that incur expenses traveling long distances to seek a diagnosis, care, or assessments for a child with CVI. To support this mission, I purchased a “Leaders in the Field” logo mug in red (pictured below). It makes me feel like a total imposter to even dare imagining my name listed amongst true CVI experts and powerhouse leaders in the field, but as a parent advocate it’s fun to dream about how I might contribute to our CVI community in some small way! By purchasing something from this scholarship fundraising campaign YOU can make a direct impact that provides assistance to CVI families in a tangible way.

For even more educational resources, check out my old post titled “Introductory CVI Reading (For Parents or Professionals)” and/or the resource page here on the blog that is perpetually under construction. Happy reading – and Happy New Year!

What’s In Our Playroom?

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Spend any time in an online forum with parents of children with Cortical Visual Impairment (CVI), and you’ll see a common theme that gets asked repeatedly. It’s also something I have been asked many times through the blog and/or the Everyday CVI Instagram page.

“What toys does your child like?”

Of course, each person with CVI is unique – and just because one child gravitates to a particular toy doesn’t necessarily mean that another child with CVI will be equally interested in it. But more often than not, children that are in similar CVI Phases and/or have comparable mobility tend to enjoy related toys/activities (which surely stems from the fact that there are 10 shared CVI characteristics).

At some point I planned to write about the incredible birthday gifts Rosalie received when she turned 2, the amazing Christmas gifts from last year that enhanced our everyday play, and (most recently) my all-time favorites from her 3rd birthday…but despite my best intentions, life happened and here we are entering the end-of-year holiday season of 2020 and I have yet to impart this information. But all of that changes today!

Without further ado, I’ve compiled a giant list of all the wonderful toys I’ve been meaning to share about for months. The easiest way for me to do this is to simply share about what’s currently in our playroom! It’s not practical or helpful for me to list literally every single thing in the room, especially because I have other children that play with things that are not visually accessible to Rosalie. Rather, I’m sharing all of the things Rosalie actually plays with and/or I’m working on intentionally introducing (you know, novelty).

Let’s get to it!

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Happy Fall, Y’all!

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Happy November, everyone! Time is flying over here, so before we get too close to winter I’d like to share about a fun fall-themed book I enjoyed introducing to my daughter that has Cortical Visual Impairment (CVI) (Rosalie) this year. If you follow Everyday CVI on Facebook or Instagram, you may have already seen me mention this book, but I thought it was worth sharing here on the blog as well. 😉

“The Littlest Pumpkin” book (which has English, braille, and tactile images of foam pumpkins) is available through American Printing House for the Blind and can be purchased with federal quota funds. If you’re in the United States, this means you can ask your teacher for the visually impaired (TVI) about getting a copy at no cost to you.

Pumpkin 1

Our TVI dropped this book off on our front porch back in September (I’m bummed our therapies need to be virtual right now, but so grateful to have a team that still delivers tangible materials to us!), but it didn’t really come to life for Rosalie until October – after we visited a farm and brought real pumpkins home.

People with CVI often struggle to visually understand novel 2D images, which is why pairing books with 3D objects is such a helpful strategy for learning.

Pumpkin 2

Many times I simply have toy versions of what is shown in books, so I have to specify that it is a “TOY” and ensure that I use salient feature language to describe and/or provide tactile opportunities to help teach how the real thing looks and feels. But when I have the actual object (like a real pumpkin), that’s even better!

Pumpkin 3

What kinds of seasonal objects have you been using to teach someone with CVI about this time of year and/or to provide them visual access to stories? Please share in the comments below!

CVI Mealtime Strategies

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As soon as I received my daughter’s Cortical Visual Impairment (CVI) diagnosis in 2018, I began researching, reading, and brainstorming ways to help her begin using her vision throughout her daily routines (you can check out my introductory CVI reading recommendations here). 

The very first adaptation I can recall implementing was the mealtime strategy of placing a shiny, red gift bow on the handle of Rosalie’s spoon (I think I got this idea from reading the Little Bear Sees book?). At the time, Rosalie was 7 months old and her mealtimes consisted largely of being fed purees on a spoon. Prior to my learning about CVI, she never seemed to open her mouth in anticipation of the spoon; rather, she would open her mouth only after I gently touched the spoon to her lips. In hindsight, it’s pretty obvious that she didn’t see the spoon coming! 

Fast forward to placing a red, shiny bow on her spoon…and voila! Rosalie began opening her mouth as I brought the spoon towards her. That first easy adaptation literally changed our lives – and reminds me that even the simplest changes can be made to provide my daughter access to the visual world.

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Our CVI mealtime strategies have evolved numerous times throughout the past 2+ years, so today I’m sharing some of what has worked for us. Perhaps it will spark new ideas for your own mealtimes!

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September is CVI Awareness Month!

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It’s September, y’all! And you know what that means….

CVI Awareness Month

Happy CVI Awareness Month! This month is a great opportunity to raise awareness for this growing public health crisis. If you’re on social media, feel free to share this image. Let’s spread the word!

“CVI-friendly” Access to Life Skills: Choosing Outfits

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I think we can all agree that being home-bound due to a global crisis like the Coronavirus pandemic is not ideal (to say the least). But, sometimes less-than-ideal circumstances can potentially have a silver lining for some.

In our case, my oldest child no longer needs to be at school by 8am(!), which means I can take my sweet time leading the kids through our morning routine of dressing, combing hair, and brushing teeth. My oldest two children need minimal assistance, so I have found myself better able to focus on these everyday life skills with Rosalie, my daughter that has Cortical Visual Impairment. Prior to our state’s school closures and stay-at-home orders, there was zero morning time to spend choosing outfits and Rosalie wore whatever I laid out the night before.

When I began introducing clothing options, Rosalie (2.5 years old) already knew the names of most colors – but that doesn’t mean you need to wait for this knowledge in order to begin! In fact, clothing could be a fun way to help teach colors (I do this frequently for Rosalie by describing the colors of shirts everyone in our family is wearing each day).

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Image of girl with braid and red bow looking at a wardrobe of red and white clothes. Text reads, “CVI-friendly” Access to Life Skills: Choosing Outfits {Everyday CVI}

How did I begin?

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Using Wall Decals to Promote 2D Processing

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Happy CVI Literacy Awareness Month!

When it comes to Cortical Visual Impairment (CVI) and literacy, it’s important to understand that anything we do to promote looking, visually recognizing, and interpreting what the eyes are seeing is creating a path to literacy. 

What do I mean by this?

To briefly summarize: CVI is a brain-based vision impairment. The eyes are healthy and function normally, but the brain has difficulty processing and understanding what the eyes see. But, how an individual with CVI uses and functions with their vision can improve as the brain makes new connections, learning to recognize and better interpret more visual input.

So, if you think about it, literally any time we get a child with CVI “looking” we are working towards literacy. A child must be able to look at something, maintain visual focus, and begin recognizing and interpreting what they are looking at in order to achieve literacy.

Keeping this in mind, I am always looking for creative ways to increase my daughter’s opportunities to use her vision throughout our everyday routines. Right now this means creating additional ways to get my daughter, Rosalie, looking at (and recognizing) more 2D images.

A recent strategy I’ve been using to promote extra 2D processing is: using wall decals around the house!

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CVI Strategies for Reading “Brown Bear, Brown Bear”

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In honor of CVI Literacy Awareness Month, I’d like to share some of the strategies I’ve used to introduce my daughter with Cortical Visual Impairment to the book Brown Bear, Brown Bear, What Do You See? by Bill Martin, Jr.

When I added a felt wall to my daughter’s defined play space, my mom gifted me a set of pre-cut Brown Bear felt pieces. I had fun immediately introducing the matching felt pieces to the pages in the story, which provided a fun tactile (and visual, obviously) learning experience.

Brown Bear-wm

Pictured above are all of the animals from the book, but to address the CVI characteristic of “complexity” I present only one image on the felt wall at a time.

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April is CVI Literacy Awareness Month!

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Happy CVI Literacy Awareness Month!

The topic of literacy is so important for the CVI community that it needs its own month (set apart from CVI Awareness Month in September) for recognition and awareness. After all, a path to literacy for an individual with CVI must look different than a path to literacy for an individual with any other type of vision impairment. Why? Because CVI is unlike any other vision impairment. With this neurological-based vision impairment, the eyes are healthy and see what everyone else sees, but the brain has difficulty processing, recognizing, and interpreting what the eyes can see.

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In other words, CVI is a disability of visual access. Appropriate strategies that adapt the environment and materials in consideration of the 10 characteristics of CVI and an individual’s unique functional vision are the key to providing access to materials. This is no different when it comes to literacy.

Literacy is defined as “the ability to identify, understand, interpret, create, communicate and compute, using printed and written materials associated with varying contexts.” (UNESCO Education Sector, 2004, p. 13)

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“CVI-friendly” Magnetic Stacking Blocks

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This post contains affiliate links. As an Amazon Associate, I earn from qualifying purchases at no cost to you.

Back in the fall, I was thinking about some of the fine motor goals I have for my daughter’s play time. She is 2 years old and very much loves “cause and effect” toys – things where she can push a button and make it light up, sing, dance, etc. These are really fun, rewarding toys (“I make an effort and this cool thing happens!”), but I also want her to be able to move beyond simple cause and effect toys as she grows (something we take for granted with typically-sighted children, but must intentionally teach and/or provide access to for a child with CVI).

When I reflected on this, my mind came up with two major categories of play that I wanted to move towards: “pretend play” and “building.”

Today on the blog I want to focus on “building.”

Do I expect my two-year-old that has physical developmental delays and Cortical Visual Impairment (CVI) to suddenly become a mini engineer building the kind of elaborate Lego Duplo inventions her (typically-developing and sighted) big brothers began creating at age two? NO. But I often look to her typically-developing siblings and/or peers to generate ideas of where I’d like her to be able to go and/or what I’d like her to have access to in play (and life). 

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