Author: MaryAnne Roberto

It’s important to understand the rationale for the CVI Range Endorsement, and there is no one better to explain it than Dr. Christine Roman-Lantzy.

The rationale behind The CVI Range Endorsement-why did this become necessary?

The rationale behind The CVI Range Endorsement-why did this become necessary?

I have long wanted to provide my perspectives on the Perkins Roman CVI Range Endorsement.  There seems to be confusion and even resistance about the Endorsement and I hope to clear up some of the misinformation or misgivings.

Around 1994 I was the lead person in a project at The Western Pennsylvania School for Blind Children called Project CRIB (Community Resources for Infants who are Blind).  The purpose was to offer functional vision evaluations to young children who were newly diagnosed with visual impairment. The project was a joy and I so appreciated the opportunity to offer information to families who were searching for the “next steps” after diagnosis.  I did not anticipate the reality I now see clearly, but could not see then.

In my time at WPSBC and Project CRIB, I was encountering many more children with CVI than those with glaucoma, ROP, cataracts, or other forms of ocular visual impairment. I was not fully prepared to address the needs of children with CVI but was highly motivated and had been since my early teaching days that began 20 years prior.  I was also teaching at The University of Pittsburgh at that time and had many resources that facilitated opportunities for me to study CVI in greater depth. But, it was ultimately at WPSBC that I first conjured the concept of The CVI Range.

I began to notice patterns of response when I asked parents questions about their child’s use of vision.  For example, when I asked, “What does your child look at?”, many parents reported, “Nothing….well, she does look at Big Bird”.  Or, “Is your child more alert to new things or familiar ones?” Of course, the responses were generally, “the familiar”. I paired these parent reports with information I was reading about the unique traits of children with CVI (Jan et al) and a distinct profile began to emerge.  I found myself reporting to parents that I thought about the degree of effect of CVI as being a 1-10 continuum and would report the number value of an individual child’s responses.  Then one day, there was a threshold moment when a parent asked me, “What does it mean for a child to score 4?”.  It meant of course that I would need to operationalize my 1-10 range. Thus began the years-long process of determining the elements that defined the characteristics at each level of functional vision based on observation of the child, interview of the parent, and my direct assessment techniques.  What began as a simple checklist of behaviors and characteristics I noticed became an intricate and interwoven set of data that I called The CVI Range.

In 2007, The CVI Range was included in my book, Cortical Visual Impairment: An Approach to Identification, Assessment & Intervention. In 2010, Dr. Sandra Newcomb published the results of her study on the reliability and validity of The CVI Range.  What once was a tool I used for my own professional purposes became a more widely embraced method to evaluate the functional vision of individuals with CVI.  I was both flattered and nervous as a cat in a rainstorm.  I was becoming more and more aware that vision professionals and others were using The CVI Range in ways that were not appropriate.  I learned of professionals using a single part of the test to derive a score, of miss-scoring and guesses.  I became aware of students who were being diagnosed with CVI based on The CVI Range and others who were being dismissed because they scored 10 (a score I have never assigned), both of which are improper uses of The CVI Range.  The CVI Range is my creation & my responsibility.  Time to take action. I owed it to the students.  I owed it to their parents.  I owed it to the field of visual impairment.

I began to think about a way to create a standard for the protocol. This would become a way to both acknowledge the extraordinary efforts of those who took the time to learn to conduct The CVI Range with fidelity and to validate their skill set.  This, of course, does not indicate that those who choose NOT to become CVI Range Endorsed are uniformly unskilled.  But, it does provide a bank of individuals who have demonstrated their ability to administer The CVI Range properly.  It’s that simple.

So, I gathered about 25 letters of support from ophthalmologists, administrators, educators, parents, state directors, and consumers about the need for a CVI Range Endorsement.  I first approached AER with my detailed proposal and the letters of support.  A committee was formed to review the need for the CVI Range Endorsement and after a single conference call, the response was that a CVI Range Endorsement process was unnecessary.  If you know me at all, you can anticipate that I did not stop there.  I next approached Dave Power, the CEO of Perkins School for the Blind.  He agreed to review the material and quickly decided that The CVI Range Endorsement process was important and should be part of the work of Perkins. I am beyond grateful to Dave for his ability to see to the heart of my proposal and to be forward thinking.  Thanks too to Betsy McGinnity and Mary Zatta for breathing life into the development and maintenance of the CVI Endorsement process.  You are pillars.

The CVI Range Endorsement provides an opportunity for professionals to be distinguished for their knowledge of The CVI Range.  It is a mere beginning in the work that must be accomplished on behalf of individuals with CVI.  The CVI Range Endorsement is also an act of advocacy.  Those who seek Endorsement are stepping over the line of “we didn’t learn this in my program”, to a place of personal responsibility and professional excellence on behalf of their students.  I am so very very proud of each person who has made the decision to voluntarily go further than required.  I am honored to be called a teacher and to be in your ranks.  Thank you.

As the mom of four kids with special needs, I have had my share of IEP meetings. With each meeting I am given a copy of a document that can contain upwards of 40 pages. The information in that document will drive my kids’ programming for the next year. Most of that information is related to progress, narratives of present levels, goals to begin working on, and specially designed instruction. Imbedded in that information is a plethora of numbers: numbers for percentages to show progress; numbers that have been recorded for baseline skills; numbers to indicate scores on standardized tests. Some of these numbers, like IQ scores, are static, and will remain with my child throughout his or her education. Others, such as reading levels, number of Braille words read per minute, numbers of buttons used accurately on an AAC device, will change, as my child changes and progresses. In the 12 years since we adopted out first child and I became the mother of a child with special needs, and subsequently added three more to our family, no one ever shied away from the numbers that are so important in the evaluation and planning for my children’s Individual Education Programs.

So it was with great surprise that I was informed recently by a vision supervisor in my state (Pennsylvania) that the ‘powers-that-be’ in our state are ‘recommending’ that the CVI Range (Roman, 2007) score not be recorded in a child’s IEP. I was sure I had heard the person wrong, or that they had misunderstood the directive, and when I had the opportunity, I asked two of those ‘powers-that-be’, in person, whether or not the information was true. After initially denying that they said that, and suggesting that perhaps the supervisors had misinterpreted their directive, one of them admitted to me that yes, that was indeed what they had said.

Interesting.

When I questioned her further about the reasoning for suggesting that the CVI Range score, which is the foundation for the IEP present levels, goals, and specially designed instruction for a child with CVI, she told me that they just don’t want that ‘number’ following the student throughout their educational career.

Clearly, this educational professional, who is responsible for developing training and implementing policies across my state, has no idea what the CVI Range score is, what the purpose for it is, or what it means. As anyone who has even the beginning knowledge of the CVI Range knows, the operative word is “Range”. The score is not static, and it is EXPECTED to change, under the guiding principle of ‘Expectation of Change’ (Roman, 2007). IF the score remains the same, they are doing it wrong, and that in and of itself is another problem.

Or, alternatively, perhaps she does understand what the CVI Range score means.

I pressed her for their rationale behind this new ‘suggestion’ and she told me that they just don’t want the score to be included in the IEP, but the teachers could write the information from the CVI Range in theire present level narratives. Huh. So, perhaps the psychologist who evaluates my son who is Intellectually Disabled should write a lovely narrative about his present levels and never report a score that places him in the ID category which then drives his programming? Or maybe for my son who is Gifted, they should chat about his skills, his language and vocabulary, and never place him into the programming that meets his unique needs? I wonder how that would work out? Conversely, if we think of the logic being used here (and I make assumptions that ‘logic’ was ever considered) if the teachers never reported the reading levels of my daughter who is deaf, in fear that those numbers would stay with her for all of her educational career, but recorded in a narrative that she was ‘doing great’ ‘making progress’ ‘really using her reading skills’, how would I know she was making progress at all?

No educator with any integrity would accept this, and no parent should.

So, here’s the interesting truth, from my perspective. While the ‘powers’ are setting up their supportive narrative of the needs of children with Cortical Visual Impairment, there are mechanisms going on behind the scenes to undermine the CVI Range and its importance for children with CVI. As the only educational approach for children with Cortical Visual Impairment, the CVI Range has been researched as reliable.(https://eric.ed.gov/?id=EJ902175) Dr. Christine Roman-Lantzy’s book Cortical Visual Impairment, an Approach to Education and Assessment has sold more copies than any other book by its publisher, AFB Press. Currently she has two other books Cortical Visual Impairment, An Approach to Education and Assessment, 2nd Edition, and Cortical Visual Impairment, Advanced Principles. Each of these books became instant bestsellers on Amazon within hours of publication.

Each year, hundreds upon hundreds of families travel to see Dr. Roman at her clinic at Pediatric View, in Pittsburgh, PA. These families are looking for guidance, information, and support for their children with CVI. When they leave her clinic after a thorough and extensive evaluation, guess what they come out with? A full report, full evaluation and a CVI Range SCORE. Imagine that? And when they return, often annually, guess what they get? A thorough evaluation, and a CVI Range SCORE. That score would have hopefully changed as the parents shared the report with the child’s team, and goals were adjusted, specially designed intrauction was put into place to match the Range score.

It’s funny how that works. A simple number between 0 and 10 can have that much power, give that much information, and literally drive the success of the child who has a brain-based visual impairment.

So what’s the problem with reporting the number score , which is an integral and essential element of the only Educational assessment designed for children with CVI? What has changed? What are they afraid of?

My thought is that now that parents are becoming knowledgeable about CVI they know that their child’s CVI Range score means something. They learn from other parents what supports are available, and they are no longer satisfied with accepting what is being offered to them. They are talking to each other and realizing that because the CVI Range score means something, they should expect that their children’s IEP should reflect the score and the information in the CVI Range. Perhaps, just perhaps, this is unsettling to the powers-that-be.

Since the CVI Range (Roman, 2007) was published in 2007, no other educational approach has been presented. Of course, there has been information and research, but nothing comprehensive that reflects an evaluation based on the 10 behavioral characteristics of CVI (Roman, 2007), a comprehensive mechanism for writing present levels, IEP goals, specially designed instruction, and principles that guide real progress for improving functional vision. While the vision field would welcome more information and additional assessment resources, none have come along that match the CVI Range (Roman, 2007). So, what’s the issue? Why would professionals outwardly undermine the educational approach that has been accepted in our field for over a decade?

I recently attended a conference in my state where the presenter spent the entire day talking about CVI, and never referenced Dr. Roman-Lantzy, either in her presentation, nor in her works cited. That was interesting. How can you present to a group of parents and professionals on a topic and never discuss the only educational approach on that subject, and the first, and to this day only, evaluation tool that targets the characteristics which are a part of the diagnostic criteria? And yet, throughout the presentation, which ended up being a commercial for an upcoming publication and left the audience with no useful information or interventions (which was one of the goals of the presentation), the information this person presented on clearly mirrored the work of Dr. Roman, (with key words changed, yet lacking substance) . When I questioned this presenter, because of course I had to, she was quite defensive of my suggestion that Dr. Roman’s work should be referenced, or at least included in any way. Most disappointing of all, when a question from the audience was asked ‘Can we expect improvement of a child’s vision?’ this presenter hesitated for a moment and then answered cheerily “Well, we just don’t know!”

Guess what? We actually DO know. A child’s functional vision DOES improve when intentional interventions are implemented based on the child’s CVI Range score, when the CVI Range is completed with fidelity by a professional knowledgeable and who has the depth and breadth of training in the CVI Range approach. And that score, that little number that the professionals in my state are so afraid of, and want to do away with? That number is important. As a TVI and a CVI consultant, that number speaks volumes to me when I read it. It tells me the child’s CVI Phase (Roman, 2007) (not to be confused with CVI Level), it tells me where that child is, precisely, on the CVI Range, and allows me to program for where he will be the next time the CVI Range is completed. That number counts, and that number will never be eliminated from any IEP written by myself or for anyone I advise.

So, my advice for parents, in my state as well as any others, as these behind-the-scenes attacks on the CVI Range and Dr. Roman’s approach continue: stay strong. Know that one reason they do not want your child’s score recorded in the IEP is that they know that score represents something, and it holds them accountable for progress. They are afraid you will talk to another family in your area whose child has a similar score and will demand more appropriate goals and service time. They also know that the new publication they are trying so hard to push has no scores, no progress built in, no principle of Expectation of Change (Roman, 2007). This new publication may well be helpful, perhaps it will give us some new information and new ideas. Terrific . However, given what I have seen, and the outright undermining of the CVI Range, I am suspicious of the intent behind all of this.

For the child with Cortical Visual Impairment, the CVI Range score COUNTS. Ask the parent whose child was scored a ‘1.75’ on the CVI Range when he was 9 months old, and who has now scored a ‘9’on the Range, at the age of 8. Ask the mother whose daughter was scored a ‘3’ on the Range and then progressed to a ‘5’. And ask them how much hard work and planning went in to helping their children improve measurable functional vision. Ask them how important those numbers are, how what those numbers represent for them. They would answer that those number represent hard work, accountability, progress, and hope.

Those numbers matter.

Those numbers count.

As many of you know, and many do not, I am the mother of four children with special needs. Yes, that is correct, and not a typo. And yes, I am overworked, overwrought, and over scheduled. In the last eleven years, since we brought our first daughter home from China, until 6 years ago when we brought our son home, I have expanded my knowledge from working with children with visual impairments, to becoming a mom of four very special kids, in addition to four older children. Our children from China have almost every ‘special need’ on the books: our daughter is deaf, and has Cochlear implants; another daughter has Cerebral Palsy, walks with crutches, has limited mobility and significant learning and language issues; our son is blind, developmentally delayed, autistic, non-verbal, and has just about every psychiatric label in the DSM; our youngest is blind, is a cancer survivor, has ocular prosthetics, and is Gifted. Did I miss any area of special need? I don’t think so. We didn’t go about adopting children with every Special Ed area: these were our children, we went to China to get them. It’s kind of that simple and that complicated, but here we are.

I tell you the story of my family to illustrate my interesting position in the field of working with and advocating for children with Cortical Visual Impairment and their families. I am a teacher, like so many of you. I am a professional with knowledge and experience, wonderful stories of successes, and sometimes stories of mistakes and missteps that have taught me and shaped me into the teacher I am today. I am a mother, like so many of you, and as the mother of eight I have had countless experiences with education, advocacy, and school systems. In another life, when my older children were younger, we home schooled, (again, not a typo) so I also had my feet in the water of being the sole educator for my children. After working for more than 20 years in the field, I became not an educator at the IEP, but the Mom. The first IEP as a special needs mom in 2008 was my introduction into the world of what happens on the ‘other side’ of the table.

For the most part in my children’s IEPs, I have been pleased with the services, support and professionalism that greets me. I am an active participant, as you can well imagine, but I have been able to appreciate the skills and expertise that comes in the persons of Special Ed Teachers, Speech Therapists, Communication Experts, Vision Teachers, Physical Therapists, Behavioral Specialists, Teacher of the Gifted, Occupational Therapists, Orientation and Mobility Specialists…did I miss anyone? If I did, I’m sorry. But I deal with them all, listen carefully to their ideas, their expertise, debate the merits of the goals they propose, tweak their thoughts to match the child that I know, and in the end, trust that they have the best interest of my children in mind, and that they will leave the meeting and go forth and educate my child.

As a consultant to families of children with Cortical Visual Impairment across the country, I am constantly amazed at the number of families who face resistance and stonewalling from their children’s education teams. These are children with a diagnosed visual impairment (CVI), often parents come to the table with CVI Range evaluations completed by Dr. Christine Roman, or other CVI Endorsed Professionals. The parents have done their homework, and are often more knowledgeable about their child’s vision than anyone on the team.

These parents come to the table knowing that there is a huge difference between the interventions that the Vision teacher has recommended that are based on ocular principles, and those that are necessary to ensure visual access and improvement of visual functioning based on the CVI Guiding Principles established by Dr. Roman in 2007. Often these parents are bullied and intimidated into accepting mediocre services, are told that their team is ‘knowledgeable’ and that they have had ‘training’in CVI. The teams who welcome outside support and new information are fewer and further between than I would like to think about. It is more common for families to have to fight for the appropriate Assessment (The CVI Range (Roman, 2007)), goals that are based on the child’s valid CVI Range score, and interventions that match that same score, with the expectation that the child’s vision will improve. (Roman, 2007).

I use an analogy in the trainings I conduct across the country that families of children with Cortical Visual Impairment are in a desert, and their child is dying of thirst. They come to the IEP table begging for professionals to satiate their child and give them access to the Oasis that is their visual world. In my experience, too many teams have sat and withheld the water, keeping it far from the child’s reach, perhaps dolling out a drip or two while sometimes they are given a drink, but they thirst for more. Too often the Oasis, which is the appropriate assessment and interventions based on CVI Guiding Principles (Roman, 2017) is kept from them.

Across this country there is a wringing of the hands among professionals about which terms to use, and professional programs that defend their practices of inadequate education in the area of Cortical Visual Impairment. Resolutions have been written to defend the practice of withholding the Oasis to students, with insistence that first they, (the ones who know best), must determine in more than one evaluation that the child is indeed ‘thirsty’, and then then they, and only they, can decide what the child needs. They argue when outsiders draw them a detailed map to the Oasis, and insist that they first take the child through the desert on their terms. They shake their heads at the parents who clamor to open the Oasis to their children, all the while arguing that they have the child’s best interests in mind.

And across the country, children thirst.

I have been at IEP meetings both in person and virtually for the last few years, and have seen all of the above, and more. Parents beg, plead, and often have to resort to legal interventions to insist that their children receive appropriate services and accommodations. Parents spend hours upon hours working on goals and ideas, only to have teams summarily say ‘thanks but no thanks, we do not agree”.

That being said, I also know that there are countless professionals across the country who are seeing the need to give these children access to the Oasis, and in spite of the ‘powers that be’ they know that the only educational approach, or the Oasis, is the CVI Range and the CVI Guiding Principles. That’s it, folks. There are lots of websites and blogs out there that give you information about Cerebral diagnoses, and more and more people are pointing away from the Oasis, and back towards the desert, like wandering nomads with no purpose or intent. While information and research is gathered, the dust and sand swirls, making the journey more difficult, and leaving children and families behind.

Through the wonders of social media, parents are connecting and communicating. Often families are victims of the zip code they live in, and they journey out of the desert to move closer to the professionals who know the way to the Oasis, and who are more than happy to give the students the ‘water’ they need to have visual access to their world. Other families are finding out about the Oasis after years of settling for the drips of water, and many are scrambling to have access, desperate to help their children. They network, share maps, and clear the sand from their eyes as they seek relief for the children in the form of visual access and improvement in functional vision.

I have seen the 16 year old young woman who could not flush the toilet or wash her hands independently, accomplish both of these skills in one day when a dedicated OT followed my suggestion to use color to anchor her vision to the toilet handle and the faucet. She was diagnosed with CVI at a young age, and had vision services that handed her drops of water, and never told her parents how thirsty she truly was, nor that there was a supply of water in the Oasis to quench that thirst.

I have seen the 7 year old with Cerebral Palsy who was placed in a learning disabilities classroom and thought to have significant cognitive challenges learn to read when a special ed teacher believed in him and followed the strategies based on his CVI Range score. His ‘thirst’ was mistaken for delay, because team members had never seen a child like him, and vision professionals decided he was not ‘thirsty’ at all, and therefore needed nothing to drink. When given access to the Oasis, he began to thrive, and in one school year, has achieved two years of reading progress.

I have seen the infant, just weeks ago, whose parents were told is totally blind, and that there is no hope for her to see, turn her body purposefully towards a red lighted toy as she is learning to build visual skills. She is one of the lucky ones because her ‘thirst’ has been identified, and the Oasis of interventions in available to her through the CVI Guiding Principles of Dr. Roman.

There are professionals who seek out information on their own, who travel to conferences and seminars, and who actively work towards gaining more knowledge of Cortical Visual Impairment. These professionals are tired of the bickering and personality clashes that create dust storms and blur the way to the Oasis and support for the children. They conduct the Range (Roman 2007) and write goals and accommodations based on the child’s CVI Range score. They are the new vision teachers who have had less than a week’s study in CVI (not an exaggeration) and who enroll in classes at Perkins elearning ( https://www.perkinselearning.org/topics/cvi ), They are the seasoned veterans who attended college before Cortical Visual Impairment was a diagnosis, but who do the same to take their students out of the desert and into the Oasis. While the professional resolution writers and researchers argue that there shouldn’t be only one Oasis and that families should be satisfied with drops of water while they discover more, families and professionals leave them in the dust, and watch the children thrive.

For those families who are in the desert, and who are crying out for visual access for your children: continue to fight, and continue the journey. There are many out there, guiding the way. As the mother of 258 children (ok, it just feels that way), I know that your children deserve to be guided to the Oasis, as mine have been to their own, and to drink heavily from the water that will open the visual world to them.

For the educators or ‘powers-that-be’ who turn their backs on the valid and reliable source for satisfying the ‘thirst’ of children with CVI, the CVI Range, know this: While you research and resolve, families and educators are moving past you and doing the hard work to satisfy the thirst of these children. For the educators who take the children out of the desert and into the Oasis of visual access, thank you for your hard work and dedication.

As a Teacher of the Visually Impaired for 36 years, I have walked through the educational desert that is little to no appropriate services for children with Cortical Visual Impairment. Once I was shown the way to the Oasis, I never looked back, and have led countless children into the Oasis created in 2007 through the CVI Range Approach to Education and Assessment.

Education for a child with Cortical Visual Impairment doesn’t have to occur in a desert with children who thirst and parents who plead. The Oasis is well-established, with room for all.

Dive right in, the water is fine.

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I am excited to let you know that I will once again be traveling to China this summer.. I never planned in my life to go once, and yet here I am setting up for my 5th trip in 11 years. I traveled to China in 2008 with my husband and son to adopt our Sophie, and then before we knew it, we were adopting Shane, then Maeleigh, then Vincent. I was honored last year to travel back, (with no extra passenger on the ride home!!!) to conduct a CVI training for Perkins International, through Perkins School for the Blind.

This summer I will be a part of a Forum that is hosted by Bethel China, an orphanage for the Blind that was started in 2003 by Guillaume and Delphine Gauvain as a foster home for blind children. Bethel conducts an educational outreach program each year for families who have kept their blind and visually impaired children, which is amazing in China, as well as for teachers, orphanage workers and medical professionals. Bethel has been near to my heart for more than a decade as we began the adoption process, and we sponsor Bethel children annually. We are currently sponsoring a beautiful little girl name Alice, who I was privileged to name after a dear friend, Alice Guarino, died of cancer. Little Alice had Retinoblastoma, the same diagnosis as our Vincent, and we are supporting her as she waits for her family to find her.

You can read about Bethel China here ( https://www.bethelchina.org/)

Bethel educates many blind children from all over China, and they have volunteers from around the world who come and dedicate their time and talent to teaching these little ones. They rely on sponsors and benefactors to continue to do their work, and are often in desperate need of supplies for the kids. Those of us who are work with children with special needs, and especially those with complex needs, know that the right materials can help to facilitate learning. In the case of children with Cortical Visual Impairment, the right materials and intentional interventions can facilitate improvements in functional vision.

Operation Bethel

As I prepare for my trip, I want to take much-needed supplies and materials that they cannot get in China. You are probably saying “But it’s China! Everything is made in China!” While this is true, China exports materials, and very few of the things we are used to getting at a store or ordering on Amazon are able to be purchased in China.

I have set up a wish list for anyone who is interested in purchasing toys and much-needed sensory and therapy materials. You can find the wish list here:
https://www.amazon.com/hz/wishlist/ls/WOARU7RI0KQF?ref_=wl_share

There are a number of inexpensive items, and others that are a bit more. Anything you feel you can help with would be greatly appreciated. I am asking for a number of items that are sensory-based as the children in an orphanage, especially those who are visually impaired, seek significant sensory input. Parents can understand how difficult it is to meet the needs of one child with complex needs, so imagine how it is in an orphanage with multiple children and limited caregivers. Giving the Ayis (Nannies) instruction on how to best use these sensory toys and devices could make the world of difference in the lives of these children.

Bethel is in desperate need of white canes, so if you have one your child has outgrown, or if you are a provider and have access to canes that are not too well used, please consider sending them to me. The cane sizes that are needed are:
: 9 of 60cm length,  10 of 130cm length, 8 of 40cm length, of 150cm length,

Thanks for your help and support. Feel free to message me if you have items to donate, or would like more information of how to support the children at Bethel. I will update the wish list as more ideas are added. Thanks!

MaryAnne

By the Summer of 2010, I had been a TVI for more than 25 years and had worked with many infants in the early intervention system in my county who had CVI. Some of those babies had been diagnosed, some were not. I recognized CVI through the behavioral characteristics, but often the doctors had not given the families a clear diagnosis. Since I am not a medical doctor, I would sit back, certainly begin interventions, but would try to wait it out for the doctors to ‘see the light’ and finally give the child the diagnosis of Cortical Visual Impairment. Sometimes that happened, often it did not.

Frustrated with my lack of knowledge and comfort level working with these complex babies, I registered for the PA CVI Mentorship Program with Dr. Christine Roman-Lantzy in Pittsburgh, PA. The program required a commitment of two weeks during the summer of 2010, and two weeks the following summer. It was a huge commitment of time not only for myself, but for my my family, as we had recently adopted two children from China. With my husband’s support, (and pleas to return), I set off on what was to be the first step on an amazing, and ongoing quest to learn about CVI, and to better serve children with CVI and their families.

On the very first day of the training, at the Western PA School for Blind Children, Dr. Roman introduced us to the basics of CVI, the characteristics, Phases and Guiding Principles. She shared with us stories of children she had worked with through the years, and her work thus far. As the day wore on, I realized, with a sick feeling in my gut, that I had been doing it wrong. Wrong. So many times wrong. There were so many children I had missed, so many whose characteristics I had let be pushed to the background because of the complex needs that everyone, from team members to medical professionals told me were more important than their vision. I was sick. I was ashamed.

At the end of that first day, Dr. Roman asked if anyone has questions or comments. I raised my hand.

“I am so ashamed,” I told her. “I missed so many kids.”

The women in the room all nodded their heads and chimed in that they felt the same way. We were overwhelmed with the burden of what we had not done, when the information was there, published a few years before by Dr. Roman. We all knew that the children with CVI on our caseloads and in our schools had been steadily increasing, but we had not significantly changed our ways of meeting the needs of those children. We were all ashamed.

Dr. Roman nodded. She understood. She had been there as well. She too had felt ashamed and inadequate as a teacher who could not meet the needs of the growing number of children with CVI.  Like those of us in the room, she had never had instruction on working with these children in her university studies. There were no online classes or webinars, and none of the associations of educators across the country ever breathed a word of this new diagnosis. So, in her quest to learn more, and to better serve the children she was not serving well, she decided to do something about it: She dedicated her career, and her life to studying, researching, and developing the only educational approach and evaluation tool for children with CVI. She shared with us a quote from Maya Angelou “When you know better, you do better.”

‘Shame’ is defined as: a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.” While we often think of ‘shame’ and ‘humiliation’ as clearly negatives to be avoided at all costs, the reality is that there is great growth and motivation in both. I was quite ashamed of my lack of knowledge and my lack of action in working with the children on my caseload who had CVI. While there were many reasons why I did not know what I did not know, there were no longer any excuses to continue to do what I had been doing. I used the ‘painful feeling of humiliation or distress’ to change my behavior and to accept with humility my lack of knowledge.  I made a deliberate decision to work to change that, and to never again, to the best of my ability, allow a child I worked with go without appropriate evaluation and interventions. While there was nothing I could do about the children I had served in the past, there was plenty I could do for the children I would serve from that moment forward.

It is now eight years, almost to the day, since the first day of the CVI Mentorship, and there continues to be much to learn about CVI.  We know more today about neuroplasticity, Dr. Roman has published a Second Edition to her book and a third book will be published any day.

Thanks to social media, parents from across the country, and across the world, are joining forces and raising their voices to demand change in the world of education for their children. The number of children with Cortical Visual Impairment continues to grow, but not so the number of university programs that dedicate full courses to preparing future teachers to serve children with CVI.

Professional organizations, University training programs, and agencies that serve the blind and visually impaired are wringing their hands and arguing over the semantics of ‘cerebral versus cortical’ and  ‘evidence based practices’ and generally defending their lack of urgency in changing the status quo to meet the needs of this very real public health crisis. Personalities are held above the needs of the children, with much pushing and shoving to have voices heard that are not willing to effect change. Some professionals are stamping their feet, complaining of large caseloads, and are resisting the need to learn new information. The CVI Range, which is the only educational approach for children with CVI, is being questioned and marginalized. So, instead of using the Range and developing a program based on the educational approach that has been shown to be  reliable  they insist that they need to learn more about ‘evidence based practices’ while children are sitting in classroom across the county, waiting visual access to their world.  Instead of using the ‘shame’ of not being prepared to work with these children, they are turning the blame on those who raise their voices in defense of them.

Their resistance is being matched by the resolve of parents and teachers across the country who are not waiting for the ‘powers-that-be’ to provide services to children with CVI that are ‘equal to those who are considered blind or visually impaired.’ (Statement on Cortical Visual Impairment, APH, 2008). Parents are organizing, and their numbers are growing. Teachers of the Visually Impaired, as well as professionals and therapists, are enrolling in the Pekins-Roman CVI Range Endorsement offered by Perkins School for the Blind. At the time of this writing, there are 70 Endorsed Professionals with over 200 in the queue. The CVI courses offered by Perkins are their most popular courses, with waiting lists needed for each semester. Teachers are asking for help, and parents are asking demanding their children receive the educational support and access to their curriculum they deserve.

As the number of children with CVI diagnosed each day increases, so should the urgency to change the system that has been in place too long. There is real hope, not false hope, that a child diagnosed at an early age and given the appropriate evaluation and interventions will improve visual functioning and realize his or her unique potential. That is the goal for each child who is given the diagnosis of Cortical Visual Impairment.

We need to achieve that goal…or shame on us all.

 

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