Movements do not form out of the actions of one or two people.
When you study history you begin to see the patterns of how change occurs. The frustrations of a relative few become the conversations and the questions that seek out others.
“I thought it was just me”
gets thrown by the wayside for
“What are WE going to do about this?”
CVI Moms, collectively WE have spent thousands of days, months, years knocking our heads on the brick wall that is the challenge of finding an appropriate education for a child with CVI.
For a long time, it thought it was just me. I found out I was so wrong. I wrote a blog post about Kate Keller.
MaryAnne Roberto, a CVI endorsed TVI and mother to 2 boys who are blind wrote a powerhouse of a letter using examples from history and her own story.
Read this letter. Get ready to write your own.
Envision CVI Consulting, LLC
Craig Meador, President
American Printing House for the Blind
January 10, 2018
Dear Mr. Meador
I read your letter on the APH Facebook page about all the exciting things APH is doing in 2018 to “Make Big Things Happen”. As the mother of two boys who are blind, the information about advances in technology that will be highlighted and promoted in the new year was exciting. One of my sons is totally blind and gifted. He will benefit from the innovative technology that brings the written and graphic world quite literally to his fingertips so that he can access the same information as his peers.
Both of my sons are adopted, and spent their early years in orphanages in China where they were left to exist with no interventions, no education, no access to the world around them. The nannies in their orphanages loved them, I am sure, but had no ability to ‘break down the barriers of accessibility’ for them. They lived in a country where children who are blind are not educated, and are thought to be ‘less than’ the typical population of children.
People did not understand them, and gave them less than adequate tools to prepare them for learning and thriving. They were left out of most of what went on around them. And then, they were adopted, came home to a family with a mother who is a Teacher of the Visually Impaired, and father who is a former Health and Phys Ed teacher at a school for the blind. Their lives changed, and they are now thriving, learning, and in have great potential for success in their lives. Sounds like a fairy tale with a happy ending, right?
For the children with Cortical Visual Impairment in our country, there is no “happy ending.”
Like my sons’ experiences in China they are often left to exist in classrooms and programs where there is little to no appropriate education and have no visual access to the world around them.
They are taught by teachers who have had inadequate instruction in their diagnosis, and treated by medical professionals who often do not understand this complex condition.
Their true potential cannot be known when they are not given a chance to experience it themselves.
‘Band aid’ programming is thrown at them, IEPs and strategies are guessed at and implemented, and team members are satisfied that they are ‘doing the best they can’ to serve the needs of the largest population of children with visual impairments in our country.
And so, when I read your post as a mother of two blind sons, I was of course excited about all APH had to offer for the future. But, to be honest with you, my sons’ needs are well-known to their teachers. They are registered for the Federal Quota, receive all the adaptive equipment they need, and are given appropriate services. Their needs are handled by professionals who write accurate goals, collect specific data, and order necessary materials for them.
At the same time, I read your post as a Teacher for the Visually Impaired, and a Perkins-Roman CVI Endorsed specialist, and I was quite disappointed. Nowhere in your post did you even mention the diagnosis that accounts for more than half of the children with visual impairments in our country. There was not a whisper of new advances in research and evaluations, no talk of new technology such as CVI Connect, no discussion of the growing need to reach the children who are learning to read in new and innovative ways.
Your post screamed of Braille access and instruction and was deafeningly silent on the children who are not taught to use their vision to learn, but are treated as if they have no vision at all.
I am privileged to work closely with many parents who are rallying to fight for appropriate services for their children with CVI. Much like Helen Keller’s parents, these parents are not willing to sit back and let the ‘powers that be’ provide inadequate services for their children. They fight long and hard and are met with resistance at every turn, and mostly from the world of educators of the visually impaired. Their voices are getting louder, and their cries are beginning to be heard. Unlike the Kellers, however, many of these families do not have the money or connections to affect real change, but slowly, surely, they are making changes in their children’s lives.
Yet, like Helen Keller and her family, who waited years to find an Annie Sullivan, these families are waiting as well. They are waiting for appropriate university programs that will educate future teachers on their children’s visual impairment, waiting for schools and programs to recognize the need for adequate services, and waiting for organizations like yours to put their children at the top of their priority list to ‘Make Big Things Happen’.
I write this letter to you as both an Annie Sullivan and a Kate Keller. As a mother of blind sons and a teacher of the visually impaired I know well the roads that both Annie and Kate walked, The road that Annie walked was paved with determination and fortitude. The road Kate walked was paved with tears and desperation for the little girl she loved so deeply. In our country today, there are far too many Kate Kellers whose roads are paved with tears and desperation, as they beg for appropriate services and materials for their children with CVI. The Annie Sullivans are ill-prepared to support those children or are not interested in learning new techniques.
And organizations like yours with national and international notability and resources have added to their frustrations and desperation by completely ignoring their children.
As Annie and Kate, I am writing to petition your organization to provide more comprehensive education and materials that will support children with CVI in our country. CVI Connect is one product that can be added to the Federal Quota program to give access to activities and much-needed data to support the students in programs to develop their visual potential. By promoting resources and education in CVI, you will quite literally ‘Make Big Things Happen’ for children, who like my own sons when they sat in orphanages half a world away, have little access to the world. We can do better for our CVI kids, and we can give hope to the thousands of Kate Kellers who cry in desperation for appropriate programming for their children.
Thank you for taking the time to read this letter. I would be more than happy to speak with you regarding your commitment to improve the lives of children with CVI through the American Printing House for the Blind’s resources and education.
Teacher of the Blind and Visually Impaired
Perkins-Roman CVI Endorsed Specialist
Thank you MaryAnne for this important lesson in advocacy!
Now, CVI Moms, what are we going to do about it?
4 thoughts on “Adventures in Advocacy / MaryAnne Roberto”
I am ramping up for a knock down drag out with my school district. I have clear documentation that supports my case beautifully. That being said, I am still hopeful that calm head with prevail and that everyone will focus on my son, and what we CAN do to make an educational program that makes sense for him!
The bottom line is that WE parents,and those that care about our kids, need to get vocal.
You got it, Maggie! Let us know how it goes. We can learn from each other.
As A Teacher for the Visually Impaired and a Perkins-Roman CVI Endorsed Specialist I veery much relate to your dilemma. I recently placed an order through a school district(unnamed) and the number items for CVI students was woefully inadequate. I have diligently worked the first half of this school year to identify as many students as I can who have CVI characteristics and develop programming based on their individualized needs. When I start reading my accommodations and instructional strategies recommendations in a ARD meeting you can literally see the level of panic increase in everyone’s eyes. It’s too much work! It’s up to those of us focused on the CVI population to make head roads. Unfortunately, can only concentrate on 1 – 2 students per semester to insure everyone, from administrator to paraprofessional is knowledgeable of CVI. Most importantly, once they have been trained, constantly following up to see the individualized needs are being met. And I can assure you they are not being consistently met. It takes one person in that classroom who doesn’t follow the instructional strategies set forth for CVI to ruin a student’s day. I am seriously looking at how I can approach this a private consultant versus in a school district because it’s a daily head against the wall. I have so much empathy for the parents of students with CVI because they are fighting this in every aspect.
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Thank you for your insight, Deborah. It is always appreciated. Those students need your expertise!