In Helen Keller A Life, author Dorothy Herrmann describes the moment when Helen experiences the ocean for the first time. Anne Sullivan Macy, Helen’s teacher, explained later that she had anticipated Helen would be overjoyed by the full sensory experience of the pull of the tide and the wetness of the water.
What she did not expect was that Helen would emerge from the waves grimacing and coughing. When she found her teacher’s hand, she demanded to know who put salt in the water? Clearly Helen had not expected that either.
Reading this passage made me laugh out loud. It also reminded me that even when I try to teach E about the world, I will always have a lot to learn. I have typical vision. I experience the world visually, first and foremost. I will leave out key details.
I keep learning and trying because I am her mom. It’s challenging. I forget to describe salient features. I don’t always notice when she becomes still to listen to a fire truck that is passing because I’m rushing to get to the store. I sometimes forget to give her a verbal cue before I give her a new object. We have lost so much time in her education. There are still so many delays. There is so much to teach. I feel as though I am just now learning how to reach her. It can be very discouraging.
I find myself wondering how can I expect anyone else to try so hard when she is not even their kid? Curling up in a fetal position in the closet seems like the only choice. Then, I remind myself (clearly it’s quite busy in my head) that this is America. There are laws and systems in place because parents like me – like you – said “Enough already,” and demanded education for their children with special needs.
We are walking a path that has been paved by the parents before us. It’s a bumpy path with potholes the size of Texas, but, it’s a path nonetheless. As parents of children with CVI, we have to create our own lane.
What we do for our children, and together for all of our children, will begin a movement to create a system of services for children with CVI when we say “Enough already.”
A key part of “Enough already,” is understanding and explaining the effects of sensory loss because CVI makes it challenging for children to receive visual and auditory information. Even if your child is making great progress moving from Stage I to II to III in short order, your ability to advocate for access and why it is important remains the same.
Here is some information you can use when you are discussing how your child with CVI learns.
The website for the National Center on Deaf-Blindness (https://nationaldb.org) contains a wealth of information about the effects of sensory loss and the importance of knowing how to teach children who lack incidental learning. (Snuck that one in there on you. If you are reading this post for the first time, please go back and read the earlier posts about incidental learning. It’s my favorite two word phrase! There’s a quiz later. Not really.)
The following is from the page, Developing Concepts with Children Who Are Deaf-Blind, written by Barbara Miles, M. Ed, and Barbara McLetchie, PhD. (https://nationaldb.org/library/page/1939)
Concepts are the ideas that give meaning to our world.
Here are some ideas that make sense from the perspective of the deaf-blind people who had them, but that might seem “odd” to someone with sight and hearing:
- a boy thought “going home” meant the feel of a bumpy road and a series of turns in the car
- a boy experiencing snow for the first time thought it was ice cream and asked for chocolate
- a girl touched a wet leaf and signed “cry” (it felt like tears)
- a girl thought food came from a mysterious place up high (it was always set down on the table from above)
- a young man didn’t know, even after many years, that his family’s pet cat ate (he had never seen it or touched it as it ate, and no one had ever told him)
What each of these examples teaches us is how important it is to always be sensitive to and curious about a child’s perceptions of the world.
We need to continually ask, “What idea might she have or be developing about this experience, object, person, or place?”
If we want to help a child develop meaningful concepts, we must be willing to enter into a relationship and seek to understand the child’s concepts.
Children who lack sight and hearing or who have significant impairments in these senses, need to be consciously given continual access to the world and the society around them.
Most importantly, we must take the responsibility of providing experiences that will maximize the child’s opportunities to develop useful and meaningful concepts of the world.
(“We” meaning the parents, yes, but also, the teachers, therapists, aides, and administrators who plan learning experiences for our children.)
It can be done. Would there be a National Center on Deaf-Blindness if there had not been an extraordinary girl who became deaf-blind and an extraordinary teacher who made it her life’s mission to teach her?
I look to history to show us how to get where we need to go.
If even Anne Sullivan Macy forgot about the salt once in awhile, I can keeping describing the world to my girl, teaching her adapted signs, making her experience books, and teaching her to communicate by listening to that $%&@ song she loves for the 15,000th time,
reaching out to you on the path we are making together.