The following story is the final straw, the very last straw, the one that broke me and the camel’s back.
This is the story that led to my current life of
crime , um, advocacy.
When my daughter, E, turned 3, she aged out of early intervention. This was after a thoroughly disheartening couple of years in search of an early interventionist who knew anything about CVI.
I realized it was going to be up to me to find the educational services she needed.
It was quite a learning curve and a huge responsibility. I was already sweating organizing doctor appointments and therapies (sometimes even successfully!), hunting down specialists, researching seizures and reflux, and occasionally, if absent-mindedly, patting my older daughter on the head.
I did not feel successful in anything I was trying to do. Launching my complicated daughter’s educational career was not something I felt equipped to do.
I was told that our state’s School for the Blind was too far: I would need to enroll her in our local special needs preschool. This was a developmental preschool classroom. The children had a variety of diagnoses. She was the only one with a diagnosis of vision loss. I was informed that the classroom teacher would have consult time with a Teacher of the Visually Impaired.
“Okay,” I thought, “I’ll just take them information about CVI. I can hand this over to the TVI.” Right? Right.
The classroom was as colorful and welcoming as any preschool classroom should be. This also means it was way too busy for a child in Phase I or Phase II of CVI. At the time, E was in early Phase II. I asked for a meeting with the teacher and TVI to get a jump on the accommodations and modifications we would need to develop together.
At the meeting, I gave the teacher resources I had printed out online. I began explaining the diagnosis and how we would need to simplify some places in the room if we were going to expect her to develop the use of her vision.
Then the TVI told me about the “one kid like that” she had 20 years ago.
A now familiar feeling of dread was born.
With little to no suggestions coming from our TVI, I suggested putting cloth on some of the toy shelves to create less complexity and clutter. I asked them to find a space for her with a tri-fold and an uncluttered table so that she could spend time learning new objects or pictures, without the visual and sound distraction from the classroom and other students.
My requests for modifications simply meant that, like any mother, I wanted her to have visual access to learning materials. I wanted her to have as much access as she could. This is more complicated for children with CVI. But, it is possible. Do-able even.
For E to be successful in this classroom, the staff would need to make the effort to understand her vision loss and to help her understand what she was seeing throughout the school environment. They needed to know that she could learn to see better and that they had a responsibility to support her in that.
I encouraged the teacher to make the requested modifications, and for the staff to read about CVI. I watched the TVI drop off a box from the American Printing House for the Blind.
Despite my feeling of dread, I thought, “I’ve got to give this time to play out.”
For a few weeks, when I dropped her off, I would linger awhile before leaving. Pretty soon I was getting the “let me do my job” stink-eye from the teacher and had to shuffle back to my car.
One day, near the end of class time, I dropped in a few minutes early to see how she was doing. Was she interacting with other kids? Were they explaining things to her? Giving her time to process? Encouraging her to touch things?
It was free play time. All of the kids, E included, were sitting on a brightly colored carpet. Behind them were low, wide bookshelves filled with toys and puzzles. Kids were reaching for toys, pulling them down, and putting them back. They rolled cars on the carpet, built block towers, or talked about which action figure was cooler.
Eliza sat with her back to a toy shelf. Smiling. She’s a happy kid. She was sitting next to an aide and listening to the kids playing. Seeing her smile made me happy too. She loves to be near other children. It was great to see her included with them. It was great that they were giving her a chance to get comfortable there with them.
The aide spied me in the doorway. I could tell she wanted to show me that they were keeping Eliza involved. So, she reached up on one of the shelves, grabbed a large plastic bin of legos and brought it down – crash – into Eliza’s lap.
Then, she reached into the bin and pulled out a small square stack of legos. She grabbed Eliza’s hand and put the legos in it.
“Here Eliza. This is a tree! Feel it? This is a tree.”
Eliza was startled both by the noise and weight of the bin dropped on her lap. To her it was just a loud noise and a physical intrusion. She was startled again by the suddenness of her hand being grabbed. The words made no sense to her.
She pulled her hand away, leaned over and curled up on the floor, overwhelmed by all of this confusing sensory input. The aide just looked back at me and shrugged.
That sound you just heard was the last straw breaking.
This moment gave me a chilling glimpse of the next 12 or so years in classrooms without teachers and staff who understand CVI.
If there was ever a kid who needed to learn about trees by touching them, E is the kid. If there was ever a kid who needed to go outside and feel the bark and the leaves and have it all explained to her (frequently) to make a lasting cognitive connection, E is the kid.
I suspect she is not the only one.
I wondered how many learning moments would pass right by her because a teacher or an aide didn’t understand that the way they were presenting the material was all wrong – and, quite likely, was pushing her further away, further into herself ?
Their ignorance would create behaviors that made her seem agitated or vacant.
(And, let’s consider this for a moment.
How much could you take if you were surrounded by flashes of light, color, and sounds that had no reference point?
What if people were always talking to you in words you found hard to understand or too quick to grasp?
What if, every day, you were told to move, yet before you could get your body organized enough to move, someone else’s hands grabbed your hands or your shoulders to steer you?
What if you didn’t have the ability to speak your joys, your frustration, your pain, or your fears?
What behavioral problems would you have on your report? How much would you learn?
My behavior report would be the size of your average copy of War and Peace, highlighted with lots of red exclamation marks, frowny faces, and the occasional cuss word.)
In this moment, I saw a situation that would begin in the ignorance, and, the apathy, of a teacher, an aide, and a TVI. Their inability to reach her would be documented as E’s lack of cognitive ability and her behavior problems.
It would start there, in preschool, but their ignorance and apathy would follow her every year as a downward spiral of low expectations about my girl’s abilities.
To learn, she needs to have experiences with the real objects. THE REAL OBJECTS. THE REAL PLACES. THE REAL ANIMALS. THE REAL SENSATIONS. (Within reason, I get that. We’re not going to run into the polar bear exhibit at the zoo to get the authentic Antarctic experience, or anything.)
THE REAL THING.
This is NOT a tree.
AND, this is NOT rocket science.
It is a problem, my fellow parents. A real problem for our kids. This is NOT how our children learn.
And, they can learn.
What can we do about it? I started telling this story to whomever would listen. Tell your stories. Ask for more real experiences in your child’s classroom. Ask your child’s teacher how she can bring real objects and real experiences into her classroom. (Because your child is not an incidental learner, right?) Ask them if they understand incidental learning. If they don’t, teach them. I know a great Blue Bowl story you can tell.
There are some advocacy action items in the works. CVI Momifesto will fill you in when we have more information.
Thank you for your comments and suggestions. We are a work in progress and will continue learning as we go.
It is good to know there are other parents out there on a similar path. And, as we travel this path together, may there be many beautful trees to touch, flowers to smell, apples to taste, and well behaved animals to pet, even the occasional even tempered polar bear. (Because how cool would that be?)