“It is what it is.” I wonder.

“It is what it is.”  A dedicated TVI with many years of experience said this to me earlier this morning.

This is not the post I had planned for today.  I planned to follow up with more examples of incidental learning, the kind of effortless learning typically sighted people take for granted.  The kind of learning not available to children with vision loss.

It bears repeating:  Children with Cortical Visual Impairment are NOT incidental learners.  This phrase may become my first tattoo.

Take this critical piece of knowledge with you when you begin the ongoing conversation with schools about how to teach you children.  It has been a real challenge to get this point across in every school my daughter has attended.  I wish I had known how to explain incidental learning much sooner.

My secret goal is for everyone who knows me to get to the point that, when I begin to say (maybe a little self righteously),“Have you ever heard of incid…”

They will cut me off with an exasperated sigh.  “Incidental learning. Yes. Good grief. We know.  WE KNOW. Can we please, for once, finish a pizza without discussing how typically sighted people effortlessly process information?”

Then, with a satisfied smile and a mouth full of cheesy pepperoni, my work here will be done.

That was the plan for this post.

But, then this morning, I participated in a conference call between the educational team from my daughter’s school and the staff at our state’s DeafBlind Project.  (There are federally funded DeafBlind projects in every state.  The DeafBlind community has been very receptive to the CVI community.  They have the expertise in teaching children with sensory loss that is often missing in general Special Education programs.  If you are not satisfied with how your child is being taught, ask about the DeafBlind Project in your state.  You can find it here – https://nationaldb.org)  

The conference call was a way for the educators at the DeafBlind Project to offer training and coaching to my daughter’s classroom teacher and her aides (sometimes aides get overlooked, but they often spend more time with the child than the teacher). I will go into more detail about the National Center on Deaf-Blindness and State Projects in later posts.

After the call, our TVI wanted to catch up on my daughter’s progress this summer. She told me about the materials and accommodations she made at the end of last year and into ESY (Extended School Year) for my girl. She explained how she had lobbied for more time in the classroom and more training for everyone.  She was actually preparing to leave early for a family emergency, but, she made sure she came for this conference call.

She wanted me to know that she has been giving this school, this classroom, my daughter, everything she can.

“But, you know,” she smiled sadly at me, “it is what it is.”

I do know.

What it is  is  Teachers of the Visually Impaired working with caseloads so large, and in so many schools, that they struggle to meet the time allotments in each student’s IEP.  TVI who can only provide consultation, at best seeing students 15, 30, 45 minutes a week.  At worst 15, 30, 45 minutes a month. (For students whose vision loss affects their access to their environment every waking minute of their day.)  TVI who, in some states, are expected to provide Early Intervention as well as in-school consultation for students through high-school. (How effective would you be if you had to braille a high school senior’s Geometry homework, then, drive to the next county to show a new mother how to interact with her baby with low vision?  How would the average Kindergarten teacher feel about taking over for a Calculus teacher and visa versa?  Different, equally important, sets of skills.) 

This is what it is.  This is how it is. It is already not enough for children with ocular forms of vision loss.

AND, Cortical Visual Impairment is a new challenge for TVI. They did not get the training on CVI in their teacher training programs. Many of them are recognizing this challenge.  They are asking for more training.  When school districts are unwilling to provide it, they are seeking it out themselves.  They are paying to get themselves the skills to teach our children, to help the world make sense to our children.

I applaud the Teachers of the Visually Impaired who are taking the initiative to learn about CVI and to advocate for children with CVI in their classrooms, often to no avail.  (Don’t give up!  You aren’t alone! These kids matter! I will personally bake you a pie and hug the stuffing out of you if I ever get the chance.)

Today was, finally, a step in the right direction for making school a place where my daughter can learn.  I know it is just a beginning. I have learned to say that I am “cautiously optimistic” when things seem to be improving.

I cannot forget that it has taken me over two years, in this school alone, of arguing, pleading, explaining, attending conferences, and doing my own research to get to this point.

I have had the pleasure of meeting a very dedicated TVI who is going above and beyond for us and for all of her students.  I am so grateful for her time and her effort.  I will continue to learn from her and with her.

Yet, it is what it is.  It is still not enough time. She is still pulled in too many directions.

If it is what it is, I wonder what it can be if we put our minds to it.

I wonder how we, the parents, can help it become what it should be: consistent access to a learning environment, teachers who understand CVI and who can make appropriate modifications in a classroom, enough teachers and TVI to give every child with any vision loss, including CVI, ample direct instruction and consultation.

I wonder.  Do you?

 

 

 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

One thought on ““It is what it is.” I wonder.

  1. Because I know you and love you and your family, I not only enjoy reading and agree with the message of your posts, but can actually hear you saying what you write. It’s like we’re both back in the same state! I am sure there are Moms and Dads who will feel affirmed as they read CVI MOMIFESTO. Keep up your amazing work!

    Like

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