Category: CVI Phase II

Georgia Aquarium: CVI-Friendly Family Fun

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

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)

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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