Category: CVI Phase I

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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“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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Tactile Sensory Play Activities

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I have never been much of one to label my parenting “style” or “methodology,” but I suppose if I had to I would say I’m somewhat “Montessori-ish” in the sense that I value hands-on learning activities that foster independence and collaborative learning. I also highly value imaginative free play, which means I spent years avoiding (or at least limiting) toys that produce various lights, music (except for instruments, of which we have many), or sounds…. And then I was blessed with a child with Cortical Visual Impairment (CVI).

Rosalie was exiting Phase I CVI and starting to cross into Phase II the first time we got her official “CVI Range Score” from an endorsed professional (find one near you!), but was still a young baby with delayed motor skills so a lot of what I first implemented involved Phase I strategies to get her looking. LIGHTS, SHINY THINGS, and TOYS THAT LIGHT UP quickly found their way into our home as I resigned myself to (and perhaps grieved a little) the fact that Rosalie’s CVI meant she just would not be a “Montessori learner.”

But you know what is super Montessori and arguably MORE important for children with CVI than for their typically-sighted and/or neurotypical peers? HANDS-ON SENSORY PLAY!

These days I find myself being far more intentional about providing tactile, active learning experiences for Rosalie than I ever was for her big brothers (after all, with typical sight they have access to incidental learning). There are so many ways to tap into your inner-Montessori (if that’s a thing?) and incorporate sensory play, so today I will share just three activities we’ve been doing.

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14 More Gifts for a Child with CVI

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In recent weeks I have shared my daughter’s 10 Favorite Light-Up Toys and some holiday activity, gift, and dollar store ideas for children with Cortical Visual Impairment (CVI). But, I feel compelled to build on these posts and share some wonderful new items because my daughter, Rosalie, just received several Christmas gifts that I have been able to seamlessly incorporate into her everyday life with CVI – in play time (the best therapy!), bath and dressing routines, scheduled therapies, and when we are on-the-go (car rides, stroller rides, medical appointments, etc.).

I hope this list of 14 “CVI-friendly” gifts sparks some ideas for those of you seeking holiday, birthday, or “just because” gifts for your loved one(s) with CVI.

FYI: Rosalie is currently in Phase II CVI, is 15 months old, and is not fully mobile (but can roll/do tummy time and is working so hard on sitting independently and the pre-crawling “quad” pose). Some of these items may be more appropriate if any of these things are also true of your child with CVI, but some can be used by a child of any ability in any of the 3 Phases of CVI. Without further ado, here are 14 fantastic gifts my daughter received for Christmas.

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10 Favorite Light-Up Toys

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One of the ten characteristic visual behaviors of Cortical Visual Impairment (CVI) is “light-gazing” or “attention to light.” My daughter, Rosalie, is at a point on the CVI Range where she does not need light (or low lighting) to visually attend to things, but lights can still be hugely beneficial for her visual attention. So, today I’m sharing some of her tried-and-true favorite light-up toys!

Because the multi-sensory input of lights AND music playing at the same time can be too complex for some children with CVI to process visually, I’ve broken down the list into the categories of “musical” and “non-musical” for easier reference. Fair warning, though: Rosalie LOVES music (it’s one of her favorite things), so this list is heavy on the musical light-up toys. And speaking personally, I cannot handle toys that make a bunch of obnoxious sound (Goodness knows my 3 kids make enough noise on their own!), so almost every musical toy we have plays classical music – because that is one thing I can handle (and even enjoy) listening to over and over and over and over….

MUSICAL LIGHT-UP TOYS

1. Baby Einstein Glow and Discover Light Bar Toy

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Georgia Aquarium: CVI-Friendly Family Fun

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I love visiting aquariums. And considering my husband’s first dream job as a child was to become a marine biologist, it’s safe to say he likes them, too. We first explored the Georgia Aquarium when we attended a friend’s wedding in Atlanta back in 2014, and it quickly became one of our favorites – mostly because it is the only aquarium in the Western Hemisphere that has whale sharks(!), but also because it is a great aquarium all-around. So, as soon as we moved within 7 hours of Atlanta a couple of years ago my husband began plotting our eventual return with the kids….

When our daughter, Rosalie (who has congenital hydrocephalus and CVI), was born we necessarily stuck very close to home (and our hospital) for a long time. Once she remained surgery-free for awhile and things seemed stable with her shunt we carefully eased ourselves back into travel with a few weekend trips in-state, no more than 2-3 hours away.

Last month, when Rosalie was 11 months old, we did our first out-of-state travel as a family of 5 because I was the Matron of Honor in my best friend’s wedding. The fact that Atlanta was the halfway point on our road trip sealed the deal: we could finally take the kids to the Georgia Aquarium!

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Whale shark sighting!

Because Rosalie is so young, we do not yet plan family outings “for” her; instead, we do things geared towards her big brothers’ interests and abilities – as long as it can accommodate Rosalie’s needs and not overwhelm or scare her.

I had heard that aquariums tend to be a favorite of kids with CVI – with their low lighting contrasted by luminous tanks, brimming with highly-saturated hues of marine creatures. This is not unlike the reason why iPads, with their back-lit screens, can be so beneficial for visual attention in children with CVI.

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Creating Defined Spaces for Play

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Within days of receiving Rosalie’s CVI diagnosis I made a mental list of all the places she regularly spends time (the crib, high chair, car seat, bathtub, etc.) so I could think of how to make those spaces more visually accessible to her (which you can read more about here). We were very home-bound when she was little, due to many factors relating to medical complications combined with my sheer terror when I thought about the possibility of her (or her big brothers!) getting sick that fall/winter/spring. But, because Rosalie has two big brothers we necessarily spent a great deal of time engaged in free play throughout the house.

We clearly have two spaces in which the boys regularly play, depending on what time of day it is: the designated play room (located upstairs) and the living room (located downstairs near the kitchen). These were the two rooms in which I would spread out a big baby blanket and create a “play space” for Rosalie as she grew, so the obvious next step after learning about her CVI was to make both of those baby play spaces easier for her to see. I really don’t think I had even learned the visual term “defined spaces” yet, but it made perfect sense to minimize the complexity of these spots where I would regularly lay her down with some toys.

The living room was pretty easy, because I had already naturally carved out a little safe space for Rosalie where her brothers quickly learned to stop running, slow down, and be extra careful (we had made strict rules early on about not getting on her baby blanket without asking my husband or me). So, all I needed to do was trade out the blanket for one that is solid black (which I purchased on Amazon). Then, I placed a black tri-fold “science fair” board near the blanket so we could minimize complexity while she was side-lying or doing tummy time.

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Since Rosalie was 7 months old when we received her CVI diagnosis she had long out-grown our “real” baby play mat that came with hanging toy attachments, but her CVI meant that she really needed to have things hanging above her that she could practice looking at. She was not yet mobile (she had started rolling to her sides and a little bit onto her stomach), so having things hanging above one space where she could not move from was an important way to integrate vision into her play time.

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CVI Phase I-II Adaptations (aka what I’ve been doing for the past month)

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We received our daughter’s CVI diagnosis on May 7, 2018. This piece was originally published on my personal family blog on June 7, 2018. It led me to believe that sharing our everyday CVI strategies has the potential to inform and help other CVI parents. Because it served as a catalyst in the creation of Everyday CVI, I have decided to re-publish it here as a starting point in this new space dedicated to our everyday CVI adaptations. I hope it is helpful to you in some small way!

Today marks one month since we received our daughter’s Cortical Visual Impairment (CVI) diagnosis. One entire month since we learned of our daughter’s disability – a disability of visual access. Thankfully we have a pediatric ophthalmologist that rightly informed us upon giving the diagnosis that it is a visual impairment that can be improved with proper interventions (how frustrating for so many CVI parents that they were wrongly misinformed by medical and educational professionals from the get-go and took years of fighting and researching to get to where we are now!).

Still, the basic information I was given at the eye doctor in no way revealed to me that CVI was so complex – and the intervention methods she listed were barely the tip of the iceberg of what we could be doing for our sweet Rosalie. But, because she gave me the most crucial information about CVI that so many parents are not given – the fact that we CAN do things to improve her vision (technically, how her brain understands vision since her eyes work fine) – I went home and got to work researching. In other words, I was able to immediately dive headfirst into medical research and advocacy mode for my daughter….

First, I visited the website Little Bear Sees, which helped me begin to see the magnitudinal impact CVI has (and will have) on my daughter’s everyday life – but it also helped me start to digest the message that there were several things I could truly (and inexpensively) begin implementing immediately(!) to help my daughter better “use” her vision, thus making important neural connections in her brain.

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