Environment Matters for Kids with CVI

The first time I caught a glimpse of my daughter’s visual world was while reading Dr. Christine Roman-Lantzy’s book, Cortical Visual Impairment: An Approach to Assessment and Intervention. She describes what a person with Cortical Visual Impairment (CVI) sees as a kaleidoscope of meaningless color and pattern. It was a tough pill to swallow but I found hope in knowing that with repetition, objects could start becoming familiar for my daughter.

The excerpt below from Chapter 1 in Dr. Christine Roman-Lantzy’s book Cortical Visual Impairment: An Approach to Assessment and Intervention illustrates what the world might look like in the eyes of a person with CVI.

Imagine that you’ve been born in an imaginary place, and you live in a room that has no windows or direct contact with the outside. The room has an ever-changing projection of color, pattern, and light on the walls. Sometimes it’s pleasant to look at but it never seems exactly the same from hour to hour or even minute to minute. The room has sounds, too. The sounds are seemingly as random as the visual display. Sometimes there is music, sometimes a voice, and sometimes the sounds of the outside environment. When the sounds occur, it is hard to know whether they are directed at you or are just background noise. When the visual patterns get too busy or move too fast, it seems easier to just close your eyes and listen for the sounds you like best. The special sounds are usually music or the voice of your regular caregiver. The words spoken by the background voices are interesting, but you don’t really know what they mean because no one pairs the sounds with the objects or patterns around you.

Then one day, a person from outside the room enters and gives you an item. It is round and red and the person keeps saying “ball” as he rolls the object toward you. The ball is brought back in your room day after day, and soon you are able to recognize it as soon as the person enters the room. Then the person leaves the ball in the room for you, and as long as the ball is close to your body, it doesn’t get lost in the background visual display. When it does roll away, you can’t find it until the person comes in again and brings it close to you…

With a better understanding of the “kaleidoscope of meaningless color and pattern” that my daughter likely sees due to her CVI, I began to internalize what that meant for her surroundings and environment. One of the primary recommendations for children with CVI is to provide them with simple, solid colored objects to look at in clean, uncluttered environments. It’s such an important concept that her wonderful visual therapist gifted us a black blanket to lay down atop “busy” rugs or hang behind objects we wanted to show our daughter.

I wish I’d known about the importance of an uncluttered environment for CVI kids sooner, but the good news is I’d already been on a quest to minimize thanks to the Marie Kondo series I’ve been watching on Netflix. There’s something about living in a completely uncluttered space that feels really good.

I’ve tried to give that to my daughter as much as I possibly can. As she grows and begins to walk, we’ll need to adjust for her age. For now, I’ve identified that her main spaces are her diaper changing station, crib, playmat and surrounding areas.

My daughter’s CVI-friendly bedroom

Here’s a photo of my daughter’s bedroom after I’ve minimized it as much as possible. The CVI-friendly toys I’ve placed in her view really pop! I hide the rest of her toys, clothes, etc. in solid colored storage boxes from IKEA and in the closets. Generally, the rest of our home has the same clean look with no knick-knacks, wall art, ornaments, picture frames or books in sight.

Since the time I’ve taken these photos, I’ve added a CVI-friendly mobile. Click here for how-to instructions.

Avoiding a busy space during playtime

One thing I quickly realized is that many of the products, toys and playmats available for babies on the market are so darn busy! I spent some time hunting for a solid colored playmat and the most appropriate one I could find is this one with solid colored blocks from IKEA. It works well because I can use it in several ways. Sometimes I fold up the side and hang a black blanket and toy she can look at while I do her daily physical therapy routine.

For a baby, it’s relatively easy to maintain an uncluttered space (they can only see so far, after all), but I imagine it will be more difficult when my daughter is in daycare and school, especially since classrooms can be so busy!

Clothes matter too

I’m literally in my daughter’s view practically all of the time, unless she’s taking a nap or doing tummy time. It took me some time to embrace the idea that I simply cannot wear my usual heavily patterned clothes since any objects I try to show her would get lost against the background.