Adventures in Advocacy / Anger & Courage

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Hope has two beautiful daughters; their names are Anger and Courage.  

Anger at the way things are, and Courage to see that they do not remain as they are.  

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago.  I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter.  As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next.  Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now.  It’s very busy in my head right now.  Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done.  Laundry?  Groceries?  You mean we still have to wear clothes and eat?  Haven’t you people done that enough already?  There are reports to read, questions to ask, and schools to visit, dang it!)  

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI.  These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S.  Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear.  I am particularly cheesy.  I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake.  Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”?  Wouldn’t that make more sense? That Hope is the result of Anger and Courage?  Will I be struck by lightning for questioning a saint?  Probably.  I warned you it gets busy in my head. My apologies to St. Augustine.)   

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities.  Easy enough, right?  (Cue the hysterical laughter.  I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.  

If you are familiar with anger as well, WELCOME.  You are in good company.

Anger is an energy.  (My apologies to Johnny Rotten.)  

Anger is a building block for Hope.

There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community.  These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force  the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us.  We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

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This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and  research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’”

As a CVI parent, you operate from the heart every. single. day.  

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart,  You are being courageous.

And, you are making it easier for the mom who will come after you.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart.  Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM: 

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com. 

Your information will go on a growing list of families facing the same challenges.  The information will not be given to any other agencies.  This is a mom fueled project.  We will use the information to keep you updated on future opportunities to advocate.  

 

 

 

Adventures in Advocacy / MaryAnne Roberto

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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.

MaryAnne Roberto
Envision CVI Consulting, LLC
envisioncvi@gmail.com

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.

Sincerely,
MaryAnne Roberto
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?  

Moms on Monday #10 / Kate Keller from AL

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We are going back in history for today’s Mom on Monday.

Since 2018 will be a year for determined (ok, fed up) parents to advocate for our children with CVI, I wanted to start the year with some historical perspective, and, perhaps, a different spin on a very familiar story.

You may recognize the last name of this particular mom from Alabama, just as you would recognize the name of her very famous daughter, Helen Keller.

We all know the story of “The Miracle Worker.”  Well, I hope we all do.  A few years ago, I learned that one state had dropped Helen Keller, her story and her books (The Story of My Life, Light in My Darkness, Optimism  & The World I Live In, to name a few) from their curriculum.  I don’t know if this is a common occurrence in today’s elementary schools.  I sincerely hope not because the story of Helen Keller’s life and her experiences with her gifted teacher, Anne Sullivan Macy, make for some of the most inspiring storytelling in American history.  Anne Sullivan Macy’s own harrowing childhood and fight for education makes her lifelong dedication to Helen Keller even more compelling.

Mark Twain coined the phrase, “The Miracle Worker” after he read of Anne Sullivan’s success teaching Helen Keller, a young deaf-blind child.  The Miracle Worker became the title of a play and a movie depicting Anne and Helen’s early days together.

It is a story of hope.

It is a story of determination.

It is a story of triumph over seemingly insurmountable odds.

And, as with every great story, there is more to it.

Before the story of the Miracle Worker could happen, there had to be parents who believed in miracles.

Kate Keller

Image:  Kate Keller

Captain Keller

Image:  Arthur Keller

In the 1880’s, after Helen was left deaf and blind following a severe illness at the age of 19 months, Kate and Arthur Keller spent years looking for a teacher who could reach her.   Their efforts went directly against popular opinion that children “like Helen” were not teachable.

Kate Keller wrote countless letters to schools and doctors across the country.  The Kellers often traveled for days from Alabama to see doctors in the northeast. They spent countless hours and dollars seeking out (often discouraging) “expert” opinions.

Years passed. As Helen grew more isolated, her behavior became more difficult to manage.  Relatives called Helen a “monster” and advised them to send her away.

That Helen did not languish in isolation and ignorance is the triumph of her parents who believed that  education (in the opinion of the time, “a miracle”) was possible.

Five years passed before the Kellers were introduced to Anne Sullivan.  Five years.

(As the parent of a child with CVI and multiple disabilities I have often said that the days last forever, but the years fly by.  I think about how long those five years must have been for Kate Keller.) 

helen and annie

Image:  A young Helen Keller seated on a chair holding a doll on her lap.  Anne Sullivan sits on the ground next to her.

 

Kate, Annie, Helen

Image:  Kate Keller, Anne Sullivan Macy fingerspelling into the hand of Helen Keller as a young woman

Helen herself once wrote,

“No pessimist ever discovered the secret of the stars…or opened a new doorway for the human spirit.”

She could have been referring to her own parents whose dogged optimism found the special teacher who unlocked Helen’s fierce intellect and compassion.

Over seven years ago, when my daughter entered the public school system,  I found myself in the uncomfortable position of educating school systems about CVI and convincing people that my daughter can learn if they would learn how to teach her.  

I found myself wondering how Anne Sullivan came to work with Helen Keller.  I wondered what the Kellers had to go through to find her.

I wondered what Kate Keller went through trying unsuccessfully to communicate with her daughter who could no longer see or hear.

I wondered how difficult it was to hope against hope in an age before the telephone, before IDEA, before the Internet.   I struggled to maintain hope and I have those things.

If you are living with a child with CVI (and possibly other disabilities) and you are finding it difficult to find resources or services that can help you and your child, you probably have an idea about how determined and discouraged Kate Keller must have felt at times.

You may recognize how those two conflicting emotions washed over her  – buoying her or drowning her – as she watched her once bright eyed daughter lurch through the house, biting and pushing anyone who kept her from getting her way.  You may have an idea about how desperate she felt to reach her daughter again.

I do.

As a parent of a child with CVI and multiple disabilities, I am grateful to Kate and Arthur Keller for their tenacity and their sacrifice.

Today’s parents are better equipped to fight battles of education and inclusion because of the struggles of parents like them.

Woodrow Wilson (one of the many presidents Helen Keller met in her lifetime) once said

“The man who is swimming against the stream knows the strength of it.”

In honor of Kate Keller and parents of children with CVI across the country and around the world I’d like to update this quote for you:

The mom who is swimming against the stream knows the strength of it.

From history and from our own experience, we know the strength of the stream….(sing along if you know the words)….  a surprising lack of awareness about CVI in the medical and education communities, too few Teachers of the Visually Impaired, no hard, accurate data on the numbers of children with CVI, too few providers/teachers with the specific training necessary to work with children with CVI, low expectations…..

We know the strength of the stream.

Thankfully, we also know that education is not a miracle.

It is a right for every child.

The miracles are the children themselves.

What we do for them will be the best work we ever do.

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Stone Walls and New Starts

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Thank you to Ian Christy, Illustrator Extraordinaire, Designer,  & Cool Rockin’ Dad for the fantastic illustration in this post!

Imagine you were walking down the hallway of an elementary school.  As you walked, you saw brief glimpses through the slender window in each classroom door.  In one class, a teacher stands writing at a whiteboard, her students taking notes.  In another classroom, children gather on a rug for story time.

In the last classroom on the left, you see a similar scene.  Students sitting at their desks, raising their hands, doing their classwork.  You notice that one little girl’s desk is surrounded by a single layer of limestone bricks.

The next day, you walk down the hallway again to see the usual business of learning.  Some children are walking around their room going from station to station.  One class watches the teacher do a science experiment at the front of the class.

In the last classroom, however, you see the little girl’s desk is now surrounded by bricks stacked about 2 feet high.  She is sitting quietly. No one seems to notice them. The teacher stands at the front of the class continuing the lesson.  The students continue raising their hands.

You become concerned.  You return every day.  Every day you look into the last classroom on the left. Every day, the wall of blocks  gets taller and taller.  Every day, the little girl sits quietly, growing more isolated than the day before.  Every day, the classroom moves on around her.  You begin to feel anxious for the little girl.

She is being walled in, cut off from her teacher, her peers, her classroom, but no one seems to notice.  You stand at the window day after day and watch as she disappears behind cold, hard stone.  ian access

You knock on the door and ask the teacher why the little girl is being walled in.  She looks at you as though you have lost your mind.  She cannot see the wall.

You run to the principal’s office to tell him that the little girl is being enclosed in a kid sized stone tower.  The principal goes to look for himself.  He doesn’t see the wall either.

Every day the wall gets higher.

You demand a meeting with the principal, the teacher, and anyone else who works with this little girl.

You show them pictures of stone walls.  You bring them research about limestone.  You find articles from education experts who have studied children behind stone walls for decades, and, who have concluded  (surprise!)  that stone walls make learning very difficult.

Children cannot learn when they are cut off from everyone else.  Stone walls = bad for learning.

The team considers your presentation.  They reluctantly admit that – maybe – they noticed the wall from time to time.  An aide admits she tripped over a brick once but didn’t want to make a fuss about it.

Someone suggests that the stone wall may not be the little’s girl’s only problem.

“Sure,” you reply, “ she may have other issues, BUT, that STONE WALL IS NOT HELPING.”

The educational team takes another couple of weeks to develop a learning plan for the little girl.

Every day, the wall gets higher.

At another meeting, the team tells you that a teacher who works with “stone wall children” will take the little girl out of the stone wall to another room for 30 minutes a week.

“But, she’s sitting behind the wall for every other minute of the school day!”

Then, Rod Serling comes out of nowhere, pats you on the head, mumbles something about how even The Twilight Zone wasn’t this surreal and disappears.

This seems ridiculous, right?  Or, sadly, mind numblingly familiar?

I have spent sooooo much time trying to explain to people that my kid does not have easy access to the world with her visual system.

I have walked by “Library Time” (my personal pet peeve for children with vision loss in a traditional school setting) where I’ve seen children with CVI sitting passively at tables in the back of the library while the librarian reads a book the size of a magazine to the children grouped at the front.

I have found “art projects” in my daughter’s backpack that were clearly colored in by the well meaning aide who finished it while Eliza was self-stimming in the back of the room.  (I know this because I went to art time one day and found everyone – Eliza’s aide included- sitting at the table coloring, except my girl, who was laying on the floor, rocking. I cannot make this stuff up.)

How are these examples any more ridiculous than watching in panic as a child is enclosed in stone, a situation that no one else seems to find problematic?

They aren’t.

To my fellow CVI families,

2018 is a new start. 

There will be opportunities for us as a community to work together to raise awareness about Cortical Visual Impairment and to demand that our children be educated in a manner in which they can learn.

In this year and every year that follows, we must demand access and expertise.  

Stay tuned

and

Happy New Year!

 

 

 

 

Adventures in Advocacy / NE AER / Part 3

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Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent.  Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries.  It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself.  Trying too hard.  My girl is a complex kid.  She is non-verbal and has an additional diagnosis of autism.  We are struggling to find a consistent method of communication.  We do not get a lot of eye contact.  Interaction takes time and effort.  It is hard to read her.  It is hard to know what she understands.  

It is all too easy to develop low expectations for a complicated kid like her.  I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.  

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

  • The importance of presumed competence and eye contact.
    • CVI masks cognitive ability.  Our children are often not able to maintain eye contact.  (Children with visual impairments cannot be accurately assessed by traditional cognitive tests.  IQ tests are not going to work on this population of children.) 
    • Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers.  Be aware of this tendency to interact less with a child who does not maintain eye contact.
    • Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.  
  • If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
  • Read articles and attend presentations.  – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.  

Regarding IEPs and Assessments:

  • The CVI range endorsement is the beginning of your journey NOT the end.  
    • Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
  • IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).  
  • When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
  • Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
  • Best practice accommodations and modifications should be based on the CVI Range score 
  • Strategies need to be embedded throughout the day
  • Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
  • As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
  • Embed the theory that there is something visual in front of that child all the time.
  • Use more CVI supports in place when developing weaker visual fields.
  • Introduce yourself and use the child’s name so she knows you are talking to her
  • Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them.   She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important.  We spend so much time talking about the kids.  Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment.  There is a solid foundation of knowledge and a growing current of educational strategies and research.  There is an active and vocal community of families around the world.  There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world. 

 

 

 

 

Adventures in Advocacy / NE AER / Part Two of Three

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Hello Fellow Families of Delightful, Sometimes Exasperating Children Who Happen to Have CVI and Who Sometimes Knee You in the Neck,
Why yes, maybe E did wake up at 4:30 this morning and kneed me in the neck while climbing into my bed. Once settled comfortably (for her) on my chest, she leaned over to kiss my forehead about a dozen times. It was pitch black, so let’s just say she missed a few times. In my semi-consciousness, I dreamed I was being water boarded.

This is an accurate description of the power dynamic in our relationship.

Moving on.

I promised more information from NE AER.  This post turned into a doozy.  So, I am splitting it in two.
To recap: There were 6 presentations about CVI at this conference! This is a big deal. Bravo to the Co-Chairs of the 2017 NE/AER Program Committee, Sharon Marie and Martha Delaney for their development of this year’s CVI track.
(You may want to reach out to the folks planning your area’s next AER conference. You could ask how many presentations they will be having on Cortical Visual Impairment. Just a thought.)
I was present for Peg Palmer’s presentation “Assessing children with CVI using Dr. Roman-Lantzy’s CVI Range,” Dr. Christine Roman-Lantzy’s follow up discussion following her “Implications of CVI in the Development of Literacy, Language, and Social Skills” presentation, and Ellen Mazel‘s presentation, “Serving our students with CVI: Learning Assessments and Intervention Strategies.”

Here are some of my takeaways from this conference:

The Perkins-Roman CVI Range endorsement is a necessary starting point and here’s why.  (Good to know for future stare-downs with school administrators about the importance of proper training for the teachers who work with our children.)

Right off the bat, Dr. Roman-Lantzy asked the discussion group if any of them were unsure about the CVI Range endorsement.
As a parent, I was surprised by this question. I’m just glad an endorsement exists  to give teachers the skills they need to improve educational outcomes for our children. I was more surprised when a few of the teachers raised their hands.

Dr. Roman-Lantzy asked them why they had reservations.
One of the teachers explained that she knew several experienced TVI who did great work with children with CVI but did not have the endorsement. Some teachers did not see the point of the endorsement. Some thought the CVI Range endorsement was extra work – more hoops to jump through at their own expense- for teachers who already had substantial experience working with children with CVI.
Dr. Roman-Lantzy acknowledged their doubts and agreed that there are experienced TVI who are more than capable of working with children with CVI. She mentioned that she herself is not endorsed.  (My mind was blown.)
Her point – an important one – was that while CVI has been discussed over the years within the field of the education of children with vision loss, there has yet to be a rigorous, commonly accepted standard of training for teachers to work with children with CVI.

(This leads me to paraphrase Ellen Mazel. My apologies to Ellen Mazel. )

The 2 most dangerous teachers Ellen Mazel has ever met are
1. The TVI who has never heard of CVI
2. The TVI who has been to one workshop / conference on CVI.
Boy, did that resonate with me. I wonder how many of us have had a teacher tell us – “Oh, I know CVI. I took a workshop once.”
Surely, it’s not just me. I bet I’d recognize the slight indentation on your forehead where you banged your head on the table after hearing these words. It’s okay. I’ve got one too.

We have been affirmed by the CVI Teacher herself!

This was worth the whole trip to Vermont, including losing my driver’s license, and, the resulting extra security patdowns to get home.
Now some history on the development of the CVI Range endorsement.

(Use this when you begin advocating for your child by telling your school system that a CVI Range endorsed educator is a requirement for your child’s ACCESS to her education.)
The lack of a standard educational protocol for training TVI to work with children with CVI has been a concern for Dr. Roman-Lantzy for years. In recent years, she went to the associations that recommend topics of study for university TVI preparation programs.

She asked them to recommend that CVI be included, to no avail.

Then, she approached Perkins School for the Blind.

Perkins met the challenge of training teachers to educate children with the #1 pediatric visual impairment in America and
First World Countries (and tomorrow and 9 months from now and 2 years from now).

It’s not going away, folks.

To address the growing need, Dr. Roman-Lantzy and Perkins collaborated to create the endorsement and other classes surrounding specific aspects of CVI.
For their willingness to address the issue of CVI, this CVI mom applauds Perkins and its President and CEO, Dave Power. Dave Power is also the father of a son with dual sensory impairments. It does not surprise me that a parent of a special needs child made the decision to move the CVI Range endorsement forward.
During the discussion session, Dr. Roman-Lantzy explained that “no one is getting rich off of the CVI Range endorsement.” There are administrative costs to running the classes which are offset by the fees.
She further explained that the creation of the CVI Range endorsement was a way to acknowledge that every endorsee has the same foundation of knowledge about CVI and has the ability to use the CVI Range accurately and effectively.  The endorsement means you know how to use the CVI range, however, knowing how to address the unique learning needs of every child identified with CVI is an ongoing learning process. CVI is a complex diagnosis. It covers a wide spectrum of children with varied abilities. Research is still unfolding.

Learning all things CVI is happening for all of us in real time.
Hearing this discussion, I can understand why an overworked Teacher of the Visually Impaired with too many children on her caseload and fewer available resources would be dubious about extra training for a “new” visual impairment.

She does not have extra time. She is being pulled in too many directions. Depending on the state and depending on the day, she may be expected to provide early intervention in the morning for an infant with albinism in a neighboring county; at lunchtime, she may be pulled into an IEP meeting for a 4th grader with nystagmus; in the afternoon, she may be transcribing civics homework into braille for a high school senior who is blind.
Changes in our educational system to give TVI fewer caseloads, more resources, more extensive professional development, and the time it requires to do their job well need to happen yesterday.
It is simply too much to ask these teachers to do more.

BUT,

nothing about having a child with Cortical Visual Impairment is simple. 
Until we can get universities to add CVI to their teacher preparation programs

AND,
until we can make sweeping changes in the system of educating children with vision loss

We have to ask.

Our children can’t wait. (Ellen Mazel again, everyone!)

Yet, they are waiting.

Every day a child with CVI sits in a classroom without appropriate accommodations – without ACCESS – to her education, she is losing learning time.

The awareness of time lost is the motor that drives CVI parents to ask overworked teachers to learn more about CVI.  It is why we ask them to help us give our children access.

To wrap up this post, I will repeat what I said to the TVI and COMS in my presentation.

We need you to believe that our children can learn.  

We don’t expect you to have all the answers.  

Help us find the answers.  

We have to start somewhere.  

Thanks to these formidable ladies, we have a starting point.  

 

CVI ladies

Adventures in Advocacy / NE AER / Ellen Mazel / Standing Room Only, Part 1

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standing room onlyThe Northeast AER Conference in Burlington, Vermont wrapped up Friday, November 17th.

Thursday, it was standing room only for Ellen Cadigan Mazel, M. Ed. CTVI. Ellen is the CVI Program Manager for the Perkins School for the Blind. (Her blog, CVI Teacher at wordpress.com is required reading for CVI parents, TVI and anyone who cares about a child with CVI.)

The information and discussions that arose from the presentations at NE AER should be another post topic.  I will do that one next.

For now, I will share briefly what I experienced and what I learned from discussions in and around the presentations.

First, it made my mom’s heart glad to see so much interest in CVI.  The fact that Ellen’s presentation was standing room only and Peg Palmer’s would have been if it had been in a smaller room was encouraging.

Many TVI, COMS, and administrators showed up to learn more about the condition that affects our children’s access to the world.

There were 6 presentations on Cortical Visual Impairment during the 3 day event.  Dr. Christine Roman-Lantzy was there!  I was present for an eye-opening discussion session. (Saved for Part 2) 

(I couldn’t stay for Matt Tietjen’s presentation on What’s the Complexity, but I really wanted to.  I highly recommend parents and teachers familiarize themselves with his work around complexity and literacy.  It is a perspective we all need to understand to help our children make progress visually and to understand what they are seeing. Check out the Perkins CVI Hub for the next class or webinar.)

This amount of information and discussion about CVI at an AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) conference was unprecedented.

It would be great to see this kind of interest at every 2018 AER conference in every state or region of the United States and Canada.

Wouldn’t it? 

To share this opinion, you can find your state’s AER at http://www.aerbvi.org.

Find the president of your state’s AER and send her/him an email about your child, about CVI, and about the need for more teachers trained in understanding CVI.

You could ask them how we as parents can support our TVI in this training.  You could ask them what we need to do help make progress in getting CVI recognized as the #1 pediatric visual impairment in First World Countries. 

I mean, since it is.

Also, you can send the email to these folks too:

AER’s Executive Director, Lou Tutt, lou@aerbvi.org 

AER’s Chair of the Personnel Preparation Committee, Olga Overbury at olga.overbury@umontreal.ca

AER’s Chair of the (provisional?) Neurological Visual Impairment Committee, Susan Sullivan at ssullivan@aph.org 

Since I had given my presentation to essentially the same audience at Peg Palmer’s presentation the day before, I shared other parent stories from the previous post where I asked you what you would say to a room filled with TVI.

This is what I shared:

From Kathryne in LA:  “My theory on the lack of interest in addressing outcomes for CVI is that our kids have all been lumped as multiple disabilities.  Incompetence is assumed. That is not to say that blind children can’t have multiple disabilities, but CVI is more prevalent in the multiple disabilities class.  Since it’s more work other therapists and teachers ignore it. 

Addressing my son’s vision has given him more improvement in all areas.  More than any other therapy.  We are now starting to see improvements in other areas now that vision has improved.  

She asked me to “point out that many of the other skills will follow if vision is improved.” 

 

From Anna in OH:  “Show care, compassion and patience.  If someone is asking for a CVI Endorsed provider, there is a reason.  

The good news about CVI is that we can do something about it.  Please accept the challenge to learn more about our children.  It will be worth it!

Please listen to the parents’ concerns and ideas.  Their children are their life, their whole world. Parents do know what they are talking about.

A passionate/trained/knowledgeable/driven CVI Endorsed provider is worth their weight in gold.” 

Then, I shared a couple of stories about the frustrations parents face when looking for appropriate educational services for our children.

One mom called her local university teacher preparation program for teachers of the visually impaired and asked if CVI was covered in the curriculum.  The head of the program told her no.  When she asked why, he said, “We can’t be all things to all people.” 

One mom called her state’s School for the Blind when her son was identified as having Cortical Visual Impairment.  When she told them her child’s diagnosis, she was told, “We don’t serve those kids here.  It’s too expensive to train our teachers in CVI.”  

If these 2 stories frustrate you, they should.  We have a lot of work to do to raise awareness and to raise our expectations of how our children are taught in their educational placements.

There will be more to come on this.

And, I wore this shirt. t-shirt

 

Brenda, the kickass mom from Seattle and the brains behind the blog and FB page, Start Seeing CVI,  made them and some proceeds of sales go the growing Pediatric Cortical Visual Impairment Society.

What a lovely holiday gift, if I do say so myself!   https://startseeingcvi.com/?s=T-shirt

More to come to wrap up NE AER.

Until then, Happy Thanksgiving!  I continue to be grateful for other parents who remind me that we in this together.

Because we are.

 

 

Northeast AER 2017 / Adventures in Advocacy / Peg Palmer knows CVI

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Good morning fellow families of well loved children who happen to have Cortical Visual Impairment,

I am writing from the Burlington Hilton where the 2017 Northeast AER conference is well under way.  I have heard that the attendance is roughly 300 TVI, COMS (Certified Orientation & Mobility Specialists), Low Vision Therapists, Occupational Therapists, Physical Therapists, with some program directors thrown in for good measure.

This is a great turnout.

Thanks to the efforts of Dr. Roman-Lantzy and people who lead the DeafBlind Projects in the Northeastern United States, this part of the country is well ahead of the curve on awareness of Cortical Visual Impairment.  There are TVI here who received training from Dr. Roman-Lantzy over 10 years ago and have been honing their skills and gaining knowledge ever since.

This conference has a CVI track – meaning there are presentations on various aspects of CVI in almost every time slot.   This may be almost unheard of at a conference like this.  It certainly is from my personal experience in which I show up at conferences and ask questions about CVI just to see what the response will be.  The response is usually a cold, hard stare from the presenter who is probably wondering who let a parent in.

It is refreshing and maddening at the same time.

Yesterday, Peg Palmer, a Perkins-Roman CVI Range Endorsed TVI with decades of experience, allowed me to hijack 15 minutes of her presentation about the CVI Range.

A shout out to Peg Palmer whose professionalism and compassion knows no bounds.  Connecticut is lucky to have her.  Her presentation on working through the CVI Range was very informative.  The videos of students she showed elicited a lively conversation and a lot of questions.

Exactly what we need.

I was able to talk to a room of 50 TVI and COMS (with a few therapists and a couple of program directors thrown in) to give them a parent’s perspective.  I shared some of my story as E’s mom and how challenging it has been to get CVI recognized, let alone understood in classrooms.

I asked them three things:

1.To believe in our children’s ability to learn

The presence of CVI is not an indicator of cognitive ability.  (Source:  The CVI page on the American Printing House for the Blind website)

I told them the Lego Tree story (see post on Lego Trees) and explained how easy it is for teachers, aides, and therapists to develop low expectations for our children if they do not understand the characteristics of CVI.  How many learning opportunities get lost if a teacher does not understand latency and lack of visual reach?  Too many.

2. To reach out to AER and to ask them make CVI a priority in professional development and in university teacher preparation programs

A few weeks ago, I had a meeting with the Executive Director of AER, Louis Tutt, and the Deputy Executive Director, Ginger Croce.  They very kindly answered my questions about AER’s slow recognition of Cortical Visual Impairment.  Only last year, did AER put together a provisional committee on Neurological Visual Impairment.  

Mr. Tutt told me AER responds to the concerns of its members.  So, if AER members contacted the president of their state chapter with the message that more professional development needs to happen for TVI and that future TVI needed to get more training on CVI, progress would be made.

Now we know.

Did you know that parents can join AER as a Associate Member for $98/year?  This is a non-voting membership category for anyone who is not employed in the field such as a parent or caregiver.

FYI:  Here are some email addresses you may find useful.

Executive Director, Louis Tutt – lou@aerbvi.org

Chair of the Neurological Visual Impairment Committee, Susan Sullivan, ssullivan@aph.org

Chair of the Personnel Preparation Committee, Olga Overbury, olga.overbury@umontreal.ca

You can find the president of your state AER chapter at aerbvi.org.

You could tell the powers-that-be at AER that you are the parent of a child with CVI and that you value their dedication to children with vision loss.

You could tell them that children with Cortical Visual Impairment, just like children with ocular vision loss, are not incidental learners (See how that came in handy?).

You could tell them that children with CVI require a different educational approach than children with ocular vision loss.

You could ask them to make educating children with CVI (the #1 Pediatric Visual Impairment in the United States and the Western world) a priority.  That means university teacher preparation programs need to add CVI to their curricula.  That means school systems need to provide extensive, ongoing professional development.

Understand this.  No one has all the answers.  This condition is complicated.  Each child is unique.

What we need to ask is that they join us in asking the right questions and seeking the answers.

3. To seek out more training

I told them about the Perkins-Roman CVI Range Endorsement.  I told them it wasn’t fair to ask them to do more training when that are understaffed and overworked.  I also said the training they got for children with ocular vision loss does not work with our kids.

So, to sweeten the deal, I offered pie.

Really, it’s all I’ve got. me-and-peg-e1510842788984.png

 

Northeast AER 2017/ A CVI Mom meets Vermont

CVI Momifesto2 Comments

Hello Fellow CVI Families,

Today, at 6:30 a.m., I boarded a plane from Dulles airport in D.C. to JFK, and then, boarded another plane to Burlington, Vermont to attend the Northeast AER conference.

AER is the Association for the Education and Rehabilitation of the Blind and Visually Impaired, the professional membership organization of administrators, teachers of the visually impaired, orientation and mobility specialists, and other vision professionals.

AER chapters around the country have annual conferences.

We CVI parents are often talking about how we need more teachers with expertise in the unique learning needs of children with CVI.

How will this be achieved if we don’t start making our voices and our children’s stories heard?

The kids are already in the classrooms.

Time is passing.

This urgency put me on a plane to where I knew I could reach out to some of the educators who will work with our kids.

Now, I’m staring at my computer screen wondering just what to say to TVI who are already overworked and understaffed.

I will keep you posted.

I can report so far that Vermont has

1. So. Much. Flannel. (a big selling point for me)

2. A restaurant called The Skinny Pancake.  I didn’t eat there, but, I may move in if my return trip doesn’t pan out..

because

I lost my driver’s license somewhere between D.C. and Vermont. (Expletive deleted times 10.)

If I don’t make it back, please forward all future correspondence to The Skinny Pancake at the Burlington Airport.  I will be the woman in the corner passed out in a blissful sugar coma behind a pile of syrupy dishes and covered in crumbs.  Wearing flannel.

I can think of worse ways to go.

 

 

 

Adventures in Advocacy: What would you say to a room filled with TVI?

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Hello Fellow Parents of Adorable Children who happen to have a diagnosis of CVI,

If you found yourself standing up in front of 50 Teachers of the Visually Impaired, what would you want to tell them?

This week, I am going to Burlington, Vermont to the North Eastern AER conference.

AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) is the professional membership organization for TVI and Orientation and Mobility Specialists.  AER offers approval to teacher preparation programs that meet AER standards.  There are AER chapters  in many states or regions across the U.S. and Canada.  AER conferences are where education professionals in the field of vision loss can get together to learn, to share and to network.

At the North Eastern AER conference, Ellen Mazel and Peggy Palmer are both presenting on different aspects of CVI.  They are very kindly allowing me to have 10 minutes to address their audience of educators.

I am going to Vermont because, as Ellen Mazel says, “Our kids can’t wait.”

But, we all know they are waiting.

I hope to ask the TVI about the number of children they see with CVI.  I am genuinely curious to hear what they have to say.

As experienced teachers, they know that kids with CVI are already in the classroom.
They have been for decades.
They can learn.
They need teachers who believe in their abilities.
They need teachers to have high expectations for them.

They need teachers who recognize the need to get more training to be able to bring the world to these children. The fact that these educators signed up for Ellen and Peggy’s presentations means that they are aware of the need for improvement.

And, the saying goes, “It never hurts to ask… TVI to take the classes to become CVI Endorsed.”

Okay, I added the last part.

At the risk of becoming the broken record all CVI parents become, CVI has been discussed and researched for decades.  CVI is the most common visual impairment in the Western world.

Yet, only last year did AER, the professional organization for educators for blind and low vision students, agree to form a provisional committee on Neurological Visual Impairment.

There is a disconnect here somewhere.  I think the disconnect is the lack of urgency for real progress in the education of children with CVI.

The national office of AER is in Washington D.C.  Since I live close to D.C., I recently made an appointment with the Executive Director, Lou Tutt.  I wanted to find out about AER’s stance on how to prepare their members to teach children with Cortical Visual Impairment. Mr. Tutt and Ginger Croce,  Deputy Executive Director, very kindly took the time to answer my questions.

What I took away from the meeting was the following:

  1. AER takes guidance from its members.  According to Mr. Tutt, if enough members demanded more information and training on CVI, then AER would comply.
  2. Reaching out to the head of the Neurological Visual Impairment committee would be a good way to continue the conversation.  I have not done this yet because I wanted to attend the conference first and get more information.

If there is a disconnect, maybe parents are the connection.  Maybe our urgency is what is needed to get CVI addressed by the organizations that create policy and teacher programs.

Let’s see what happens in Vermont.  I will get the chance to ask a group of members to strongly encourage AER to approve more training for teachers who will be teaching children with CVI.  I will suggest they get the Perkins-Roman CVI Range Endorsement.  I will offer them pie.

I will let you know how it goes.

And, remember, if you have something you would like to tell them, send it in to info@cvimomifesto.com.