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

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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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!

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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Celebrating Halloween (CVI style)

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Happy Halloween!

Two of the “10 characteristics of CVI” are color and complexity. This means bright, highly-saturated hues that are solid colors (with little or no patterns) tend to be easier for someone with Cortical Visual Impairment to visually process.

Red is one of the first colors our brains learn to process as infants, so it’s no wonder Elmo is often a favorite of little ones with CVI! He is solid, bright red and easily identifiable with his simple eyes and big, orange nose.

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Pictured: little girl dressed in an Elmo costume, surrounded by 4 Elmo dolls.

Another CVI characteristic is novelty, which means a child with CVI will be drawn to the familiar since new people/places/things are much more challenging to visually process. Someone with CVI cannot simply “look” and learn what something new is; they must learn the distinct, salient features that categorize objects for what they are, which means new things require building a new framework of understanding in the brain…whereas familiar objects are ones the brain has already learned to “see” (process).

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Hello, Instagram!

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Are you on Instagram? Now “Everyday CVI” is! I invite you to follow along for visual announcements and updates about new blog posts (and possibly more). Just search for @everyday.cvi.

InstaAnnouncement

Not on Instagram? No worries! You can always subscribe to notifications about new posts (click on the blog Menu and select “Follow Blog Via Email”) AND/OR follow the Everyday CVI Facebook page. However you follow along, thanks for joining us on our everyday CVI journey!

Does she “look” blind now??

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This was originally published on the Everyday CVI Facebook page, but I’ve decided to give it a permanent home here on the blog as well. May it serve to encourage you on your CVI journey and/or help raise awareness about everyday life with CVI.

“But she seems to be doing great.”
“What? She doesn’t look like she has special needs.”
“She doesn’t look blind.”
“Why would she ever need a cane?”
“I don’t understand; can she see? It looks like she does.”

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These are things family, friends, and strangers have said about my daughter that has Cortical Visual Impairment (CVI). It’s beyond frustrating for me to listen to other people comment on things they know nothing about – but that’s the thing: THEY KNOW NOTHING ABOUT IT.

We don’t owe the world explanations, but when I can shed some light on my daughter’s CVI in a constructive way it makes the world around us just a little bit more enlightened, more aware, and potentially even more inclusive. So while the focus of EverydayCVI.com is to share helpful tips and strategies that provide my daughter the visual access to improve her functional vision, today I’m sharing something a little different. It’s a glimpse into our world – not of our visual adaptations, but of what CVI sometimes looks like for our family.

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Introductory CVI Reading (For Parents or Professionals)

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

So, someone you know has received a diagnosis of Cortical Visual Impairment (CVI). Or perhaps you suspect a CVI diagnosis, despite medical and/or educational professionals refusing to put a name to the condition…. But what is CVI? And how can you learn about it?

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I wish I could say that the pediatric ophthalmologist sent me home with some medical literature to read through on the day she diagnosed my daughter with CVI. She didn’t.

I wish I could say I was given a pamphlet or card with a list of resources that would teach the basics of what I needed to know. But I wasn’t.

Unlike every other time my daughter has been given a new medical diagnosis, I was sent home empty-handed. No written medical information, no leaflets, no book or website recommendations. Nothing but a diagnosis – and instructions to wait for the state agency to call about setting up vision services once they received the doctor’s referral.

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“Rosalie, Small but Mighty” (Interview on Kaleidoscope: The Cortical Visual Impairment Podcast)

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Do you know Parent CVI Advocate Jessica Marquardt? If not, you should! In 2018 she launched Kaleidoscope: The Cortical Visual Impairment Podcast, where she discusses the growing public health crisis within the world of vision impairments (spoiler alert: it’s CVI!), sharing stories of neuroplasticity and visual perception.

Kaleidoscope

Jessica launched this much-needed podcast the same month my daughter, Rosalie, was diagnosed with CVI – so listening to Kaleidoscope has been an integral part of my journey as a CVI parent. I have eagerly devoured each new episode, taking heart that I am not alone and gaining insight, tips, and inspiration from others directly impacted by CVI. When Jessica asked if I would sit for an interview I felt honored and, of course, said yes!

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