Okay, my fellow parents of gorgeous children who happen to have CVI.
Here’s the deal.
We have to speak a common language for advocacy. We have to know some fundamental things about the effect vision loss has on learning to affect change in our early intervention programs and our school systems. We have to talk the talk.
In most cases, we have to teach the talk.
Will it be easy? No, but what else do you have to do?
(Sorry, I’ll wait while we all catch our breaths from hysterical laughter or choke on a spit-take. I’ll wait while you get a towel. Bonus: Now the floor is clean!)
Knowing how to parent a child with severe vision loss did not come naturally to me. I have typical vision. My daughter was the first blind person I had ever met. At 6 months, when we got the diagnosis of CVI, we were told she was legally blind. We did not know anything about CVI.
What I remember about the first couple of years:
- She never looked at me or anything I tried to show her.
- Her head hung down all the time. (I thought this was because of the diagnosis of Cerebral Palsy which we also got on around the time she got her diagnosis of CVI. At Christmas time. Ho. Ho. Ho.)
- She never slept for more than 3 consecutive hours. (So when people at the grocery store commented on how serene she looked while asleep in the baby carrier on my chest, it was all I could do NOT to scream – “She is not asleep! She never sleeps! Her head just hangs down! All the time! Why won’t she sleep? I’m dying inside! Argh!” To be fair, I was severely sleep deprived. This is against the Geneva Convention, by the way. People have been charged for war crimes for less. Just sayin’.)
- I was never more than an arm’s length away, yet I felt as though I was a million miles away from her. (Nothing made me feel more useless than sitting on a blanket next to my infant daughter, trying to get her attention, while she stared blankly at the light coming through the window behind me. I asked her therapists over and over again, “Is she in there?” Typing this reminds of how low and sad I felt in those days. Did I mention that the child NEVER let me sleep?)
There was so much I did not understand. There was so much to learn. Over the years, I sought out some fantastic teachers of the visually impaired (Annie Hughes, TVI and Director of VIPS-Indiana is my personal hero.) and Dr. Roman-Lantzy in an attempt to educate myself about vision loss and CVI.
What I learned from them made perfect sense, but had not occurred to me before. I was struggling. I wasn’t sleeping. My older daughter was a toddler. Nothing made sense at that time. Basic hygiene was a luxury. Forget living day-to-day, we were living minute-to-minute. The transition into the “new normal” of being a family with a child with multiple disabilities was (and is) chaotic and messy.
Maybe sharing some of the fundamentals will help another mother of another child with CVI get a handle on the situation a little earlier, a little easier.
Maybe developing a common language will help us all go into our IFSP meetings and our IEP meetings with an action plan and the information to back it up.
Here’s where we need to start.
Incidental learning is the learning that just happens for a typically sighted person. From the time you open your eyes in the morning to the time you close your eyes at night, you are constantly taking in information about your environment without even trying.
Incidental learning is the information you receive with your eyes without realizing it.
Children with Cortical Visual Impairment are not incidental learners.
Here’s how it was explained to me.
Miss Annie’s Blue Bowl Story
Blindness or significant vision loss has a number of impacts upon a young child’s development.
One of these is the child’s lack of access to incidental learning.
Vision is the “great integrator” of sensory input. No one plans incidental learning, but it goes on every minute that a sighted child is awake. To illustrate this, I often tell parents the “Blue Bowl Story.”
Two babies are in high chairs at one end of the kitchen. One has normal vision, and one is blind. The dad comes into the kitchen and says to his wife, “Hey Honey, where is the blue bowl? I have rented a movie and want to make some popcorn.” The mom replies, “It’s on top of the refrigerator.” So, the dad walks to the refrigerator, he stretches his arm up and reaches on top, he grabs the bowl which is blue, and he walks to the microwave to make the popcorn.
In those few seconds, the child with vision has just had four “incidental” lessons;
1) The word/label “refrigerator” was connected with the object
2) The child is starting to get an idea about the concept of “on top”
3) The child is beginning to understand that even though this bowl is much bigger than his cereal bowl, it is still called a bowl. It must be the “scooped out/can hold things” aspect that makes it a bowl.
4) The child has a blue ball, and this is a blue bowl, so identifying that color as blue has just been reinforced
What did the child without vision get?
He/she heard the same words, but they weren’t connected to any meaning. Sometimes this is called “empty language.” This story illustrates how important it is for children who are blind or have low vision to have real experiences with real objects, so the language they hear isn’t “empty language,” but is tied to meaning.
Thanks to Annie Hughes, TVI and Director of Visually Impaired Preschool Services-Indiana
Being able to say, with confidence, “My child in not an incidental learner,” can be the start of an effective conversation with your educational team.
Stay tuned for more information and resources about incidental learning.