Name that Neurological Visual Impairment & Love the Hub

Hello you good looking fellow parents of glorious children who happen to have CVI!

(Only one cup of coffee so far.  Why do you ask?)

I have been researching resources on Cortical Visual Impairment for the website of the up and coming non-profit organization, the Pediatric Cortical Visual Impairment Society (PCVI).

Often, when researching, information will come up about Cerebral Visual Impairment.   Generally speaking, Cerebral Visual Impairment is what we in the U.S. call Cortical Visual Impairment or, even, Cerebral/Cortical VI, aka C/CVI.  OK?  Confused yet?

For decades, researchers, teachers, and doctors on different continents have been debating what title to use to most accurately describe this neurologically based visual condition.

Here’s is one random mom’s perspective:  Whether you prefer “Cerebral” or “Cortical” should not hinder the progress that needs to be made in getting this condition recognized, diagnosed, and addressed in the classroom.

I would happily call CVI, “Shirley,” “Joe,” or “Rumpelstiltskin” if it meant that schools understood that they need to have endorsed teachers and a team approach to working with children with this unique visual impairment.

But I digress.  We were talking about resources.  There is so much good information out there in cyberspace.  There is also a great deal of outdated information.  Much more than when I began looking 10 years ago.

Sorting through it is time consuming.  And, we all know how much extra time we have, am I right?

Here’s a timesaver and an excellent resource:  the CVI Hub on the website for Perkins School for the Blind.

http://www.perkinselearning.org/cvi

Perkins “gets” CVI and understands that more progress in diagnosing and educating children with CVI needs to happen YESTERDAY.

I particularly appreciate Perkins’ eagerness to share parent experiences and parent/teacher experiences.

As we have mentioned before, there are fellow CVI parents who are moving mountains and raising awareness on behalf of their children.  Their stories are important for the rest of us.  Their successes and their challenges give us greater perspective about our own experiences.

Here are 3 resources on the Hub that have come directly from CVI parents (There are plenty more, as well as a wealth of information from teachers, doctors, and researchers).

1. Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3. 

A dedicated and fierce CVI Mom, Gunjan Rastogi-Wilson, and her family’s CVI Endorsed TVI, the incomparable MaryAnne Roberto, recently did a webinar for the CVI Hub.  This webinar is a great resource for parents at the beginning of their CVI journey.  You will find it at http://www.perkinselearning.org/videos/webinar/journey-cvi-experience-birth.

2. Accessible Ipad Apps:  Eric Jerman 

Eric Jerman is a CVI Dad who received his master’s degree in Education for Orientation and Mobility from UMass. He has collected a list of over 200 iPad apps and has organized them into four categories.  1. Cause and Effect   2.  Digital Books for Interactive Stories  3. Music 4. Communication

“My son can’t see five feet beyond him, so I bring the world to him using the IPad.”

I, for one, am so glad he is sharing his knowledge to help me bring the world to my daughter.

http://www.perkinselearning.org/technology/posts/accessible-ipad

3.  Talking points for school districts

YES, school districts!

When you are debating with your local school system about the need for CVI Endorsed Teachers, refer to the CVI Hub site for information you can take to your next IEP meeting.

On the Hub site for School Districts, you will find the following quote:

Perkins’ reputation in the field is unparalleled.  When my staff required professional development on working with students with CVI, I knew I could trust the experts at Perkins.”  — Irene M. Meier, Ph.D., Director of Special Education at Fairfax County Public Schools, Falls Church, Virginia

The Fairfax County Public School System has a national reputation for excellence.  FCPS has enrolled several teachers in the CVI Endorsement and is training teachers, therapists, and aides in Deaf-Blind Modules.

This training is happending because a parent (guess who?) kept bringing in research articles, reports from Dr. Roman and Dr. Sandy Newcomb, and statements on CVI from the American Printing House for the Blind and the American Foundation for the Blind.  It took the better part of 3 years to get momentum going, but there is momentum.

If other school systems are seeking out more training on Cortical Visual Impairment, why isn’t yours?

Fair question, don’t you think?

 

“CVI Moms are the busiest people I know”…and THIS IS WHY

I had quite the action plan this week and I learned stuff.

I learned that if you are up late typing a blog post,  you will fall asleep.  You will delete the nearly finished post when your head bobs, you jerk awake, and your hand slaps the keyboard. Then, groggy and irritated, I learned that when you spend five minutes clicking refresh in the hope that the words will reappear, they will not.

This was not part of my action plan.  Just thought you should know.

I haven’t given up on my action plan, but, the learning lesson with a blog post reminded me that CVI moms are often trying to cram more into a 24 hour day than will comfortably fit.  It’s like the day is a pair of Spanx and we have to fit the elephant in the room into those Spanx.

Every day.

It’s not pretty.  There is chafing.  But, it gets done.

Mostly.  There may be some unsightly bulges and an enraged pachyderm, but, hey, nothing’s perfect.

(I just used the word “Spanx” in a post about vision loss.   I’m thinking this is a first.) 

Dr. Christine Roman-Lantzy often says that CVI Moms are the busiest people she knows. She says this when the need for more CVI endorsed teachers, policy changes, and basic awareness about CVI is inevitably brought up in a presentation.

CVI Moms are often the mothers of children with multiple diagnoses.  We are juggling medical and educational needs while attempting to maintain families, jobs, and, (oh, who am I kidding?) – an identity of our own.   I am mostly failing at all of the above.  And, I have forgotten my middle name.

This week, I have not been particularly successful.  My patience is worn thin.  I speak in short, rushed sentences.  I am behind on making the adapted experience books I promised I would make for E’s classroom.  My dining room table is the insurance/invoice/bill station.  I owe return calls to therapists, the genetic counselor, the insurance case manager, to name a few. I may have walked/fed the dog.  Maybe.  My couch is covered in pictures, more pictures, Velcro, (So. Much. Velcro.), glue sticks, bare books (www.barebooks.com – You need these to make simpler book versions of other books, or of pictures of objects that are meaningful and motivating.) 

This week I was able to correspond with some other CVI moms about some advocacy and fundraising items in the works.  They are getting it done.  They are managing their jobs, their families, and their children’s IEPs.  They are doing the legwork teaching their schools about what children with CVI need.  They are training the educational staff. They are demanding more educational staff.  They are adapting materials.  All of these activities are full time jobs on top of their full time jobs.

And, still, when asked to do something that will help other families like ours, they say “yes.”

They understand that change will come only when we work together.

There will be chafing, however, it gets done.

In the past, relatives have asked me as they coolly examine my never-ending stacks of paper and pictures, my bed head and permanently furrowed eyebrow, “Why do you try so hard?”  At first, I stumbled over my words because I was so surprised by the question.  It seemed so obvious to me.  And, then, in their presence, I felt so alone.

I thought, “No one should ever have to feel this alone.”  I’ve thought that a lot over the past decade.

This is why a community is so important.  The CVI Moms I know are fierce, loving, dedicated, and resolute.  They are some of the best people I will ever know.  Their determination and courage gives me heart when I lose it from time to time. They remind me that I am not alone.  They remind me why we try so hard.

THIS IS WHY.

 

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This post and life got the better of me this week because I spend a lot of time advocating for my daughter’s quality of life.

And, then, I don’t feel so unsuccessful.

“The bottom line is that child is not making sense of the visual world.” – A CVI Mom speaks

Hello Fellow CVI Families!

CVI Momifesto has been around a month today!  (I started it on Labor Day.  See what I did there?)

If you have read a post or two, I encourage you to go back and look at the first post in which the actual Momifesto is laid out.

There remains a need for advocacy for our children. Our children often have several diagnoses.  They are often called “complicated” (If I had a quarter for every time I’ve heard the word “complicated” in a doctor’s office or a classroom,  I’d have toll fare for the rest of my life.)  Some of our children aren’t that “complicated” and the extent of their vision loss goes unnoticed, and therefore, unaccommodated.

Before I published CVI Momifesto, I contacted a mother named Bernadette Jackel after I found her post on another blog. She graciously agreed to let me include her story here.

Bernadette has an important perspective to share with CVI parents.  She has been on this road longer than many of us.

Please read her story and share your thoughts.

The following was posted on 10/30/08.  (A Parent’s Voice blog by Susan LaVenture on http://www.familyconnect.org)

The first guest blogger, a mother from Connecticut, is Bernadette Jackel. Her son is seventeen years old, and has cortical visual impairment (CVI). Many families that have kids with CVI find that it can be complicated; often times the services providers themselves don’t fully understand the impact the visual impairment has on the child’s learning. A child with CVI often has so many complicated issues that frequently the vision impairment is ignored, and a parent needs to be the advocate to make sure that their child is receiving the treatments and rehabilitation services that will allow him to learn.

by Bernadette Jackel
Cortical/Cerebral Visual Impairment is the fastest growing diagnosis of visual impairment today, and yet there are still many medical and education professionals that don’t understand the implications CVI has on learning and functioning in a visual world.
When my son was born 17 years ago, there was not very much information available on CVI nor was it easy to access that information since the Internet had not yet been designed. We had to muddle through as best we could, taking his vision into consideration at every turn.

My son experienced difficulties with visually guided movement so he walked later than his peers. Once he was walking, he tripped over curbs, walked off stairs as though they were flat, hung on for dear life in crowded environments, was not able to see in noisy environments, had a difficult time orienting himself in space, and often confused other people for me. He also experienced his vision being there one moment and not being there the next. He needed everything he was looking at explained to him so he understood what he was seeing.
When my son began school, we found that the staff had no knowledge of CVI. They couldn’t understand that this cute, blond-haired, green-eyed, lovable, friendly, outgoing, funny, ambulatory, speaking 5-year-old who didn’t “look blind” and “seemed to see” could possibly have Cortical Visual Impairment. The TVI did not know how to teach the staff how to teach a child she didn’t know how to teach herself.
So, it was decided that his visual impairment would not be considered a “true” visual impairment but instead a learning disability and later an intellectual disability. After all, his acuity is measured at 20/80 and he could see the primer print. But it took him a really long time to focus on each word because he lacked saccades. He didn’t see the middle of each word because he had a central scotoma. He didn’t understand the pictures on the page because there wasn’t enough contrast. He couldn’t pick out one object on the page because the page was too crowded to see more than one thing at a time.

He had difficulty in math because he was unable to see all the objects he was supposed to count. For example, he would only see three items yet he was told there were five in front of him.

The playground became another area that was difficult for him. He couldn’t play ball because he didn’t see the ball coming at him. He couldn’t run around with his peers because he so often had to stop to feel surface changes with his foot for his own safety.
He also had difficulty identifying classmates by sight, sustaining visual attention for long periods of time, seeing in the distance, and difficulty with extraneous auditory stimuli.
Again, although these difficulties were well documented and he had a diagnosis of CVI, it was decided that he chose not to see, that his visual fluctuation was volitional and his difficulties learning were due to “other issues,” not to vision. I often liken his public school experience to refusing to teach a deaf child communication skills and then saying that child has a severe language disorder.
These same difficulties that he had at 1, 2, 3, 4, and 5 years old he still has today. Much of it he has learned to compensate for himself, however, not one of the above-mentioned issues have resolved, gone away, been cured. Because of our diligence and his own perseverance, he certainly understands the world better now than he did when his CVI was considered to be a learning disability rather than a visual impairment.
We had to go through a due process hearing in order to get him an appropriate education. Once he was given the proper modifications and accommodations from a wonderful staff that understands the learning implications of CVI, both academically and functionally, he began to thrive. Unfortunately he spent seven years not getting these modifications and accommodations.
It is disturbing that these same misunderstandings still exist today among many of our medical and educational professionals. Today there is plenty of information available, but every day I read how children are still experiencing the same difficulties getting the proper services that we did.

Parents are still in search of good information because they are not being given any from their medical professionals. Some parents are having a hard time finding a doctor to give the proper diagnosis although the child clearly has CVI. Certainly children are entering schools where there is no knowledge of CVI, and often these children are experiencing the same difficulties my son did in trying to get an appropriate education.
Regardless of whether a child cannot see due to an ocular issue or a brain issue, the bottom line is that child is not making sense of the visual world. The lack of understanding this leads to many, many difficulties in the child’s life, difficulties that can easily be circumvented.
It appears that we are still lacking good strategies for students as they enter into school settings although we are not. Many, if not all, of the same strategies one would use to teach a child who is blind or low vision are very beneficial to the student with CVI. The child’s educational environment must also be taken into consideration.
CVI is a real visual impairment and it is a growing diagnosis. CVI needs to come to the forefront of the medical and educational collective mind so children can get the proper diagnosis and the education they deserve. Colleges and universities with TVI programs need to have good, comprehensive classes on CVI so the teachers understand and learn best practices. With all this in place, many of these children will reach their fullest potential and become contributing members of society; otherwise, I fear we will end up with a large population of undereducated, visually impaired people who will be dependent upon society for their livelihoods.

This was written 9 years ago.  Pretty sobering, huh?

WHAT YOU CAN DO:  Join the conversation.  If you are willing to share some of your story as a CVI parent, write us here at info@cvimomifesto.com.

We will follow up with you for an upcoming feature. 

“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?

 

 

 

“Kids Can’t Wait”

The actual quote from a comment to the first post on CVI Momifesto was

“In a perfect world, all TVIs would be knowledgeable and endorsed, but kids can’t wait.

The quote came from Ellen Cadigan Mazel, M.Ed. CTVI.

Ellen is a Cortical Visual Impairment Advisor with many years of experience working with children with deafblindness, and 10 years of experience working with Dr. Roman-Lantzy.  She created her blog, CVI Teacher, in 2014.  Ellen is at the forefront of raising awareness about how to educate children with CVI. She also teaches Cortical Visual Impairment: Assessment and Education in the Visual Studies graduate program at the University of Massachusetts Boston.

She is right.  Kids can’t wait.  The families can’t wait either.

When writing the CVI Momifesto, I very specifically used the term “CVI Endorsed” professional, educator, or therapist.  I did not write Teachers of the Visually Impaired.

I knew this would start a conversation.  It is an important conversation to have.

Parents of children with CVI should know the following: 

Teachers of the Visually Impaired are not automatically equipped to assess and to work with a child with Cortical Visual Impairment just because they are TVI. 

Graduating from a university training program for visual studies does not prepare new TVI to support children with CVI.  They are not trained in the history of CVI.  They are not taught how to use the CVI Range.  They are not trained in making a CVI schedule, accommodations or modifications to a child’s home and school environment.

That’s right, folks.  Cortical Visual Impairment is the #1 pediatric visual impairment in the Western world, yet, our university training programs for teachers of the visually impaired do not cover it in depth (or -stunningly- AT ALL, in some cases).

In case you missed this last part, university training programs (with the exception of the Visual Studies program at the University of Massachusetts Boston) in the United States do not prepare teachers of the visually impaired for children with CVI, the most common pediatric visual impairment.  These programs are supposed to be preparing the educators we, as parents, need to be our first guides and mentors in all things CVI.  They have not risen to the challenge.

Parents need to know this in order to ask very specifically for a TVI, teacher, or therapist, who has completed the Perkins-Roman CVI Range Endorsement. It is a training program offered by the Perkins School for the Blind.  The program was established because of the lack of interest in CVI by the folks who create curricula for VI teacher training on the university level.

I  learned about the current lack of teacher training in CVI years ago, when I began asking questions about why it was so difficult to get CVI even acknowledged in the public school system, let alone find a teacher who understood it.

Kids can’t wait.  But, they do.  Way too often.

We experienced the lack of CVI trained educators over and over again.

I knew I was in trouble during the first meeting with a veteran TVI assigned to our daughter’s first preschool classroom.  I asked her what she knew about Cortical Visual Impairment.  (I had met some of the children she already worked with in the school system and knew that at least 2 of them had also been diagnosed with CVI.)  She thought for a moment, then said, “Oh yeah, I had a kid like that about 20 years ago.”

Flummoxed.  That would be the word I’d use to describe my reaction.  I recognized that she had kids with CVI on her current caseload and I AM NOT A TVI.  Over time, I also realized that she had made no accommodations for those children in their educational settings.  She had not trained the teacher or the aides in the classroom on how to engage a child with CVI.  A month after school started, she dropped off a box of materials from the American Printing House for the Blind.  The aides sorted through the materials without any assistance from her.  Eventually, they sat my daughter in front of a light box with a spinner for “vision time.”  (That sound you just heard was my head banging on the table as I remember this.)

Kids can’t wait.  Yet, they are, and that is unacceptable.

Children with CVI and other sensory loss are sitting in classrooms right now being taught by teachers who do not understand how the children access their environment.   They are missing out on a lot.  This thought makes me crazy.

WHAT YOU CAN DO

Begin conversations with new providers, teachers, therapists, and yes, Teachers of the Visually Impaired by asking about their training and experience.

We have the CVI Endorsement now, so you can ask them if they are CVI Endorsed through the Perkins School for the Blind.  Their reaction will tell you a lot.  Don’t take no for an answer.

You are within your legal rights to demand a provider who has the expertise to work with your child’s vision loss.  It is critical not to overlook this piece of your child’s team.  

What our children need is not extra.

It is access.

(This statement is stolen directly from a presentation by Julie Durando of the Virginia DeafBlind Project.)

If a TVI without a CVI Endorsement says she will do a CVI Range on your child, tell her to put the CVI Range down and no one will get hurt , er, go get some training.  Without the endorsement, her assessment will not give you an accurate result, nor will it give you accurate accommodations and modifications.

You can do it.

Our kids are waiting.

 

 

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