As my daughter with Cortical Visual Impairment (CVI) has progressed further into Phase II, I find myself constantly searching for new ways to integrate her vision with everyday functions. There are all kinds of ways to visually adapt Rosalie’s everyday “free play” time (creating defined spaces, providing toys and an environment that address the ten characteristics of CVI, etc.), but one tool I created specifically for this purpose is: a felt wall.
What is a “felt wall,” you ask? Well, it’s exactly what it sounds like. Instead of making a “felt board,” I selected part of a wall in our play room to cover with felt. This provides a sturdy back-drop on which I can display any number of felt pieces.
My daughter with Cortical Visual Impairment (CVI) recently TURNED OFF HER BEDROOM LIGHT SWITCH FOR THE VERY FIRST TIME! To be clear, I was holding Rosalie in my arms when she flipped the switch – so no, my child who is not yet fully mobile did not suddenly learn to climb. 😉
This seemingly “simple” task is often taken for granted by parents of typically-developing children, but the rest of us probably know and understand what an accomplishment this is for a child with a vision impairment (and the delayed fine motor skills that result from it).
How did we achieve this particular skill? Well, it started with me thinking of things her brothers liked to do for fun at her age and then creating a goal to help her build the functional vision and fine motor skills to do one of those activities: flipping light switches up and down!
Rosalie is achieving milestones at her own pace, but her desire (and need) for constant play and learning is no less than it is for my other children. I knew that turning off her bedroom light switch would not be as “simple” as it was for her brothers, but I made it a goal nonetheless. And not only are light switches fun, but turning them on or off is a useful everyday life skill. Win-win!
I love (good) books. As a child, I was a huge bookworm. As a mother, I could seriously read to my children nearly all day long if they would let me! I think one of the most personally devastating parts of discovering our daughter’s Cortical Visual Impairment (CVI) diagnosis for me was the realization that reading books with her (and teaching her to read) will likely require a great deal of adaptation – and it simply will not be the same experience as I’ve had with her big brothers. Still, I am filled with hope because some children with CVI can become skilled readers – and even fall in love with literature.
“I now know that some children with CVI will achieve the prerequisites for reading and ultimately become competent readers, while others will follow a different path. But I cannot foresee ahead of time which individuals with CVI will read, so I believe that all children must be provided a path to literacy. Some will use symbol systems that are not word based. Others will learn a discrete set of words that can be used for short passages or functional reading. Still others will become skilled readers who will ultimately read fluently, with comprehension and pleasure…. So I encourage my colleagues to take the risk of believing that your students with CVI are capable of literacy no matter what form it ultimately takes….” (p. 37)
Personally, at this point in time I must choose to believe that Rosalie (my daughter with CVI) can and WILL achieve literacy. Right now she is only 16 months old, so we have a long way to go on a path to literacy – but she takes an interest in 2D images (a skill that typically emerges in Phase II CVI) and is at a great age in regards to neuroplasticity. This is a prime time to read picture books with her and focus on building her repertoire of “known” objects!
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.
One of the ten characteristic visual behaviors of Cortical Visual Impairment (CVI) is “light-gazing and nonpurposeful gazing.” Practically speaking, this translates at the most basic level to “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….
When I first learned of my daughter’s Cortical Visual Impairment (CVI) diagnosis I began strategically implementing at least one visual adaptation to every aspect of her daily life. The only thing I could initially think of for her bath time was to show her the red Elmo faucet cover (describing what it was and what we were about to do), and then place it on the edge of the bathtub so she could (maybe/hopefully) see it while I washed her.
We now know (thanks to Rosalie’s latest follow-up CVI Range performed by a Perkins-Roman CVI Range Endorsee) that Rosalie has made great strides with her vision in recent months and is more solidly in Phase II (hooray for big progress!). Phase I is all about building visual behaviors and ultimately getting a child to “simply” LOOK. But in Phase II we are seriously integrating vision with function, which means I have taken everything to the “next level” in terms of functionality. It’s no longer enough to JUST get her looking, but now whatever she is looking at needs to be even more meaningful; it needs to make sense within the context of whatever she is doing (for additional explanations of the 3 phases of CVI and what kinds of environmental supports are required within each phase, check out this instructional piece written by Ellen Cadigan Mazel, a teacher of the visually impaired and CVI Endorsed Professional who blogs at CVI Teacher).
So what else have I done to further adapt bath time, focusing on integrating vision with function?
Three simple things:
First, I have been using a bright yellow washcloth.
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!
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.