Changes in Pediatric VIEW Program
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.
I hope everyone is staying safe and well. To those who have been personally touched by the COVID-19 pandemic, I send my deepest concerns and sincere wishes for recovery.
Appointments at Pediatric VIEW are slowly resuming and there is a cautious sense of optimism about returning to some sense of normalcy. Thank you for your patience and for the opportunity to meet with many of you via Zoom.
I am writing this blog post during a time in which we are all self quarantined. It’s a strange and unsettling time. If you are spending more time indoors than you expected, and you are a family member of a child with CVI, you may be toward the bottom of your “fun things to do” list. My own children had a phrase they used on long rainy days indoors. “Mom, what can we do or eat?”. To that end, I am offering a few ideas of things you may be able to do with your children.
Put a few drops of food coloring in a container of hand sanitizer gel. Place it on a backlit surface and move it gently back and forth. When your child turns in the direction of the color gel, apply on the child’s hands if appropriate
Create a simple video of your child’s favorite ball moving in a trough, tabletop, or between 2 hands. Play the video (without sound) and then offer the ball once your child localizes on the video.
Dismantle a color pom-pom or use other shiny material stuffed into an empty plastic water bottle. Attach a small light or slip the light inside the bottle-if near Phase II, these shiny, lighted bottles can be lined up for a simple bowling, or knock-down-type game.
Create a matching game using an object and a photo of the same object. If higher in Phase II, match an illustration of an object to a photographic “match” (a drawing of a cup with a photo of a different cup)
Create a family video of a routine such as mealtime, going to the mailbox, washing dishes, etc and keep a video diary of “a day in the life”, or “favorite parts of my day”. Your child will be the featured star of the video and will likely enjoy watching themself in the video.
Make simple puzzles (more complex if Phase III) made from images cut into 2-3 pieces and take iPad photos of the pieces. As you are building the physical puzzle, find the “next piece” by choosing from the backlit images of individual pieces.
Create a matching game using small photo images of environmental features at home (couch, ty, chair, table, dresser, doorknob…). Show the prompt image to your child and ask them to place the part to the whole. For example, “This is a picture of part of something in the living room (photo of a corner of the couch). Can you show me where the rest of this is ( physical couch)?”
Create a salient feature “go fish” game. Create cards by cutting out simple magazine images creating sets of the same subject (ducks, balls, shoes, hats, cats…). The players can ask for matches by using salient feature language (give me your cards that have a picture of something with pointed ears & whiskers”). The winner can be the one who first gets a certain number of matches.
Make a map of a familiar area-backyard, basement, or living room. Cut out shapes (or, used photo images of the actual targets) that represent furnishings, environmental features (deck, tree swing, windows) and place the objects on the felt board or other map-making surfaces. SImple animal of character figures can be used to create a sequence of activity (“Clifford moves from the bed to the window and then puts his bone on the dresser”). The child can replicate with their own body in real space or play by moving the character on the map surface.
Create a visual journal that has an image of some element of the day and match it to the day of the week. The names of the days can be color-bubbled or, the child can add the weekday name to the bubble outline. At the end of the week, you can review the “week at a glance” which will help support the development of concepts such as temporal relations, sequence and salient features of daily occurrences. (Phase II or III)
I hope some of these ideas will be appropriate for the child in your life who has CVI. I’ll add more ideas in future posts!
Stay safe and be well. You and your families are all on my mind and in my heart.