The Interesting Situation of CVI Range Progress in a Young Adult
I never cease to be surprised by the ways in which functional vision operates in individuals who have CVI. Early on, everything I read and experienced told me that the best chance of seeing improvements in functional vision would be limited to the youngest of children. The golden rule in the 1990s was that the first 3 years of life were the time of greatest visual plasticity and the best, maybe only option for the brain to develop, organize, or rewire vision. But as my approach became more organized and as The CVI Range became my reliable method for assessment and support, I began to wonder about all of that.
In 1993, I developed The CVI Range as a protocol to determine the extent of the impact of the 10 visual and behavioral characteristics. I wanted to be accurate and careful when looking at functional vision in children with CVI. But what I never could have imagined was that while using an approach that was both consistent and targeted, I would see the CVI Range scores change. And change they did. I saw a trend of improvement that was undeniable. Something was happening and these changes could not be associated only with young children.
Of course, science now has newer insights into how vision is processed in the brain. Plasticity for developing vision in the brain is believed to go on at least into (and possibly beyond) adolescence. This is great information and creates a sense of cautious optimism. Cautious because with each year that the individual with CVI relies on sensory systems other than vision, the more resistance there may be to use vision as a primary method for learning, both directly and incidentally. Plasticity vs experience…an important partnership that can determine the course of a sensory system such as vision.
This dichotomy creates urgency in me. The clock ticks, time passes, and years go by. What happens when I encounter a student who is a teenager or older but whose functional vision lingers in Phase I or early Phase II? Can a CVI-rich environment produce experiences that improve functional vision even in an individual who, through no fault of the family, has had inefficient CVI programming and therefore, has relied primarily on tactual and auditory learning? Can the wall of resistance to use vision be breached? I think yes.
This week I had the opportunity to re-evaluate an individual who has complex needs including CVI. She began her targeted, CVI-specific journey when she was 15 years old. This young woman has parents who had a sort of “awakening” about CVI but wondered if it was all too little, too late. Though there were many false starts with a series of educational experiences in which teams considered this individual “non-academic”, there was a special force in her life that was more powerful…her mother. This mom found a CVI knowledgeable professional while also educating herself in depth. Together, the two carefully planned home-based instruction in areas others might have imagined ridiculous. These “crazy” plans included every aspect of the life of her daughter and included literacy, math, O&M, self-determination, and leisure. Her AAC device was redesigned to match her CVI Range score & included words and realistic photographic images. And, as the daughter was offered CVI appropriate materials, environments, and language associated with interpretation of visual information, some interesting things happened. The daughter learned to express her thoughts, learned words, interpreted images, and, oh, her functional vision improved.
So, back to her CVI Range re-evaluation. Her current scores place her in high Phase III. This is a cause for celebration and also a cautionary tale for parents and educators. We cannot be certain about plasticity or the fragility of the brains of some of the children for whom we care. But we certainly have control of the experiences we offer to children with CVI. It matters that we see the impact of the characteristics of CVI but just as important that we see the PERSON. They are all capable of benefitting from a proper education. Sadly, more than the neurology of the student, or their age, it is “the soft bigotry of low expectations” (Bush, 2000) that is too often their greatest barrier.
This week I saw my final Pediatric VIEW families as a member of the Allegheny Health Network. Tomorrow my materials will be delivered to The Children’s Home and Lemieux Family Center (5324 Penn Ave Pittsburgh, PA 15224, 412-441-4884). I am honored to have this opportunity to not only continue Pediatric VIEW but to grow it in new directions. The Children’s Home Administrators are welcoming me with open arms and a degree of enthusiasm generally only seen in a teenagers on a first date. I am excited and beyond all else, grateful.
The last act of packing at my West Penn office was to disassemble the collage of items on the bulletin board next to my desk. It is sort of a sacred place for me and a constant reminder of why I do this work. Sometimes at the end of a long or hard day at Pediatric VIEW, I glance to that board and remind myself about the importance of every family seen or somehow represented in the display. So, today as I carefully removed the layers of items, I felt an overwhelming sense of sentiment. There were of course, photos. Photos of children and sometimes yearly versions of the same child. Those are so much fun to study. There are images of entire families and of children in various settings. I am endlessly curious about the lives of the children I meet and so seeing them on vacation, at grandma’s house. or P.T. fully intrigue me. Some of the photos are tenderly caressed, especially those of the children who are no longer living. These photos are a gallery of time, place and emotion.
It took me a bit longer to work my way through the artwork shared with me. Some of the pieces were completed during assessment sessions by the child with CVI or a sibling. I have a couple portraits of me that have been crafted by these young hands as well. Oh, that my body really resembled a stick. I love contemplating the colors and themes used and they are as beautiful to me as anything I have seen at The Louvre.
The reminder of the items are mostly notes. Notes from a sibling, thanking me for “being nice and not giving their sister a shot in the arm”, or, writing, “thanks for heping with Joes bision”. I have a beautiful poem written by a father who described the experience of being the dad of a child who has complex needs. And, there are various expressions of thanks by parents who appreciate being able to be heard. Of course, there are a few holiday cards and even a birthday invitation or two.
Some objects have been fixed to the board as well. A few of the tokens include indigenous items from other countries. There is a ceramic necklace from Australia, a Guinness beer magnet from folks who traveled from Ireland, tiny flags from Croatia, the United Arab Emirates, and South Africa. I have two key chains tacked up on the board too. One keychain is from New Zealand, the other is from Canada. It is like having a tiny toy store of memories.
I will take every one of these items with me to The Children’s Home. They are priceless reminders of the 31 years I have worked at West Penn Hospital. They are also priceless reminders of the privilege I have been given to be in the company of families who have taught me lessons beyond measure. The Children’s Home is 3 blocks from the office where I currently sit and within hours, will vacate. I cannot wait to see the treasures and memories that will be posted next to my desk in my new work adventures. Thank you to all of you who have supported me during this time of transition. Your letters, calls and acts of kindness to me are now my heartfelt obligation to return to you.
In the words of singer Mary Chapin Carpenter, “change comes of its own free will”. And change has come to Pediatric VIEW. On May 20 I was informed that my hospital system was “sunsetting” my program. It took me a moment to associate such a lovely image with such a disappointing turn of events.
Pediatric VIEW began in 1999 as an outgrowth of the hospital NICU developmental follow up programs. Pediatric VIEW was established to meet an unmet gap in addressing the needs of children who have complex needs including conditions that can be associated with visual impairment. This tiny little program eventually blossomed by word of mouth into one that is almost exclusively attended by families whose children have CVI. I have evaluated about 1800 children at Pediatric VIEW using the CVI Range and have felt honored to be in a position to meet and support families from all over the world. I have learned much and frankly, have never been anything but thrilled to come to work at Pediatric VIEW. I have been so lucky to work in a number of capacities that include teaching, research, and writing but nothing compares to the what I have always described as “the most important work I do”, sitting in a room, face to face with parents and their child. That’s the best, most authentic work I can imagine.
So, back to the change. The Administration of West Penn Hospital in the Allegheny Health System has decided to close Pediatric VIEW. The details do not belong in this blog but one thing is for certain, it is not because the program has been less than successful. The schedule is booked full through June, 2022. The need is there but the model is not going to be supported. Pediatric VIEW at West Penn Hospital will end in August, 2021. But, I do not plan for Pediatric VIEW to end…I will find a new venue and carry on. I am already working on Pediatric VIEW 2.0 and will announce the changes as soon as my next steps are arranged.
If you currently have an appointment or, wishing to make one, Marie and I are working hard to accommodate you. If for some reason we miss your contact, please reach out to me at: firstname.lastname@example.org And, thank you so much for entrusting your children in my care. I hope we can all go forward to the next version of Pediatric VIEW together.
There is much discussion about these two terms. Some believe that the term cortical refers to a historic affiliation with a condition described by Dr. James Jan & his associates. That is true. Some believe that the term cortical visual impairment has been replaced by a term called cerebral visual impairment and that the diagnoses are essentially interchangeable. That is not true.
According to Dutton and others, cerebral and cortical visual impairment are terms used to describe different constructs but share an important element. Both cerebral and cortical visual impairment are used to describe brain-based visual processing disorders. But, simply put, cerebral visual impairment is a term used to describe all forms of visual processing disorders including what once was called, visual perceptual disorders. These disorders can include dyslexia, prosopagnosia/facial blindness, and visual figure-ground disorders. It is a broad definition and the children with cerebral visual impairment may have needs that are best supported by a special educator who has expertise in reading, learning support, or general special education. Some with cerebral visual impairment may be referred to a teacher of the visually impaired and possibly an O&M Specialist, others will not. Commonly, children with cerebral visual impairment are first identified as having visual difficulties in early education or reading activities. It presents as a subtle disorder that may escape the notice of parents and providers until as late as school-age.
By contrast, the term, cortical visual impairment is designated for individuals who adhere to a specific profile of visual and behavioral characteristics, the 10 CVI characteristics. They share some important things in common with their “cerebral cousins” but these children are fundamentally visually impaired and are identified early on by their parents as “not seeing well”. Parents of children with cortical visual impairment frequently describe their concerns about vision to their child’s pediatrician in the first months of the child’s life. In all cases, children with cortical visual impairment require the services of vision educators and O&M Specialists.
And, why does this matter? In the end, it is critical that students receive the proper services that match their needs. Teachers of the visually impaired are not trained to evaluate or diagnose reading problems. They are not trained to evaluate or diagnose visual perceptual disorders. Conversely, reading specialists are not skilled in methodology associated with visual impairment or O&M instruction. Ideally, it would be lovely if all educators could do it all. But, clearly, even those in the field of visual impairment are still working hard to learn about the complex and specialized needs of students with CVI. The concept that one educator can be competent in all areas of instruction is simply ludicrous.
So, here’s where we are. If your child receives services from an educator who describes cerebral visual impairment, you may need to ask some follow up questions. I recommend you ask whether that professional will be using The CVI Range to evaluate functional vision. You may want to ask the professional whether they consider your child visually impaired and thus in need of a program that centers on providing access and consistent specialized direct instruction to remediate the developmental and learning risks posed by CVI. You may need to be aware that regardless of the number of additional complexities, your child qualifies for more than vision consultation and should be carefully evaluated for O&M services.
Dr. Sharon Lehman has suggested a solution. She wisely sees the differences in the cortical/cerebral terminology. Dr. Lehman recognizes the risks inherent to conflating these two categories together while also knowing that both groups have a right to appropriate services. Her solution is to create an overarching descriptor called Brain-Based visual impairment with subcategories of cerebral and cortical. In doing so, both conditions can be fully recognized and defined appropriately. In taking Dr. Lehman’s approach, both cerebral and cortical visual impairments can co-exist and be defined without compromise to the educational needs of the student. I sincerely hope Dr. Lehman’s approach will come to fruition. In the meantime, I will continue to fight the good fight to ensure that the cortical continues to be used with distinction.
We are now well into a month of pandemic safe distancing. We are mostly home except for those heroes who are working at hospitals, grocery stores, restaurant take-outs, and drug stores. When we do venture out, we cover our faces and wear gloves like bank robbers. We have learned to watch the behavior of others as though each potential exposure could transform us into zombies (just watch World War Z…seriously). And, all the while, we are charged with working from home and simultaneously, teaching our children. For some of you, this is a dream come true. One parent recently told me that this period of time is the first she has has “full custody” of her child since she was born. She said that since the first days there have been doctors, nurses, early intervention specialists, therapists, special educators, and teaching assistants who have coached her about the best interests of her child. Now, it is her chance. All decisions are hers. Finally.
Other families are desperately missing the embrace of the specialists and the daily routine. They miss kissing their child goodbye for the day and again as they return from a full day of educational and therapeutic activities. The routines for the family are off-orbit and it feels unsettling.
So, regardless of your experience, please know that I am keeping you all in my heart and in my thoughts. Here are a few additional ideas to try at home.
These activities can be adjusted for individuals in high Phase I-Phase III
Gather items of a specific color on a “house-tour” or “yard-walk”. Place them in a box and then sort through them based on salient visual features. For example, “Let’s find all the red things that have round parts (red apple, red ball, red puzzle shape ), or, “Let’s find all the blue things that have a long, straight part (blue spoon, blue toothbrush, blue leggo).
Make a home phone-video of a routine, “starring” your child. Show it to the child before and/or after the routine. “Let’s watch how you are using your spoon. Here’s what you yesterday when you ate oatmeal. I wonder if you will try it this way again today? I am so impressed with the way you get oatmeal on the spoon and bring it all the way to your mouth”.
Help your child learn to think about time in a fun way. Use objects or images that are associated with routines of the day. Some will be “morning things” some, “afternoon things” and if appropriate, some, “nighttime things”. Ideally, use a different color container for each of the 3 parts of the day. Offer the child an item, and ask them to place it into the morning, afternoon, or nighttime box. If Phase early Phase II, use objects. Images can be used for later Phase II (above a CVIR score of 5) or Phase III. Salient feature language can be reinforced in this activity. “I have something here that is shaped like 2 legs with feet shapes attached. When do we put pajama bottoms on?” Keep in mind that some items like spoon, cup, toothbrush, may be placed in more than one box.
Some children may be watching YouTube or other media. Help build number concepts by keeping a tally of how many times a particular video is watched by placing a poker chip or other tangible through a color-highlighted slot. Or, place a clothespin on the edge of a box for each time watched. Then, at the end of the day or next morning, count the tangibles one-by-one and talk about the number quantity, as “many”, as “few” or as more/less than the previous video count. After a few days, and if the video changes, you can discuss which one is the favorite based on the greatest number of views.
Play “I Spy” by placing 3-5 familiar items in unusual places in the house or yard. Provide hints but describing salient visual features. “I spy something that has triangle ears and whiskers. It also has black & orange stripes. Can you find it?” This game can also be adjusted for a child trying to find all the objects of a particular group (find all the balls, find all the blocks, find all the letter b’s…) by using the “warmer-colder” technique. As the child approaches the general direction say, “warmer”. If they move further away, “colder”. You can also incorporate O&M directional terms like right/left, in front/behind, etc as the child moves or is moved through the space.
As I was writing this, I couldn’t resist thoughts for “while you are home” strictly for adults. These included but are not limited to:
….binge-watch “Say Yes to the Dress”, order 5-pound bags of M&Ms on Amazon, start cleaning out a closet but then get fixated on the diary you wrote in high school, conduct Google searches on all the people in your high school diary, listen to a trashy audiobook using headphones but make facial expressions as though you are learning quantum physics, have a second glass of wine…
But of course, that would be inappropriate so I won’t. I’m fine…fine.