New CVI Podcast: Jessica and Dan Marquardt: CVI parents

This week saw the launch of a powerful new podcast, Kaleidoscope. The podcast is named Kaleidoscope, from the description of the visual world given to us by people with CVI. They describe their world as a swirling scene of random colors and shape with little visual meaning.

In this first episode, Jessica and Dan describe their experiences as they tried to understand their daughter’s CVI and to advocate for services that would build functional vision due to well known brain plasticity. Tune in and share with professionals and especially with parents of children at risk for CVI.

http://thecvipodcast.libsyn.com/testing-are-cvi-parents-out-there-the-marquardts-episode-1

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Environmental Changes for CVI

A request for a CVI accessibility environmental consult came to the CVI team from Perkins Physical Education staff: Before the consult, they were clearly on the way to making this space more “CVI Friendly” with ideas already in place for controlling light, visual complexity and sensory complexity by using the supports of color and movement to create orientation, enjoyment and safety in the physical education spaces. Here is a write up of our brainstorming session as an example of this CVI collaboration.

CVI Collaborative Consultation: Gym Area

Collaborative Consult Partners: Physical Education team and CVI mentors.

 Goals of consult:

Creating an accessible environment for students with CVI in the gyms, on the walking tracks and in the fitness room.

Discussion of which activities need visual adaptations versus those that can be auditory and tactile-only based on the identified goal of the activity. This will vary by activity and student.

  1. How to make the coat hooks/hangers accessible for optimal student success?

The goal is student independence to hang up their coat. This is determined to be a visual goal.

The area is dim which will not impact the student with CVI. We brainstormed using light, movement and color for visual and visual motor targets: Using red bike hooks that are larger and a highlighting color, using Tap-lights as a light support.

  1. How to make the track accessible?

The goal is exercise. This is determined to be a tactile goal that we can build some visual targets into. The track has a rail that can be used as a tactile support for walking the track. To eliminate lightgazing to overhead light, use a baseball cap with a bill or turn the lights off (during the day and when there is enough light coming in from outside). To build some visual task into this activity, use red, shiny indicator on the wall at the four turning areas. For the most part, this is a tactile activity.

  1. How to make the exit door in the pool accessible for exiting the area?

The goal is visual and safety. This is determined to be a visual task.

The pool area has many doors and students are confused as to which one to use to exit. Use a red indicator on the exit door.

  1. How to make navigating through the fitness area safe and accessible?

The goal is moving safely through the space. This is determined to be a visual goal.

Is changing the flooring possible and practical? Example: visual or textural strip to define path around machines. The floor is textured so would not hold the tape color highlighting well. Perhaps a location indicator of several destinations could be used and learned (color, shiny).

  1. How to make the gym less complex?

Remove things not longer used: hanging ladder, hanging rings. Use the “two wall rule”. Pick two walls and make these non-complex. Face students to these walls for instruction.

  1. How to make the fitness room less complex?

Remove decorations (done). Sit in the equipment and determine if this is facing a place that is too complex. Turn towards a wall.

  1. How to make the water dispenser accessible?

Color highlight with shiny tape its location. Color highlight with shiny tape the water lever on the right to get cold water. Color highlight with shiny tape the bottom of the cup dispenser (this is the place to grab).

  1. How to make sport equipment accessible?

Create a non-complex are of the gym with a table and chair. Face the student towards the non-complex wall. Add side “blockers” to reduce peripheral movement. Present each piece of equipment against a black background one at a tie. Name it, name its visual features and name its function. “This is a bat for baseball. We use it to hit the ball. It is brown, long and has a grip”.

Use shiny, saturated colored lightup balls: Available on Amazon https://www.amazon.com/SHINYBALL-Beach-Light-Waterproof-Colors/dp/B07C3P31NN/ref=sr_1_45?ie=UTF8&qid=1525793849&sr=8-45&keywords=toy+red+shiny+ball

9. How to reduce complexity of the workout machines? Treadmill?

Add removable cover for the complex array of buttons. One that flips on and off would be ideal. Color highlight important buttons like “on” and “off” in bright but different colors. To help the student get onto the equipment and know where to grab, highlight with shiny tape on the handles or use the “grips” from Amazon below. For stepping up, color highlight “where to put your foot”.

  1. How to reduce lightgazing?

Use baseball cap. Position student with back to the light. Arrange equipment so light is behind the student.

BlueCosto 5x Soft Neoprene Luggage Handle Wrap Grips Suitcase Travel Tags

 

 

 

Parent Interview, Observation and Direct Assessment: What is Learned?

The CVI Range assessment (Roman-Lantzy) gives us a great idea of functioning across the environments and across people.

  • The parent interview gives up the across the lifetime visual abilities (improvement history), across environments information (home vs grandmother’s house) and across the day abilities (early in the morning and after a long school day).
  • The observations part of the CVI Range gives us the functioning in a less adapted learning environment (for now!).
  • The direct assessment, conducted in a very adapted environment (low complexity, sound, movement etc.) that gives us a look at the visual skills with all the supports in place to support that student’s vision. That direct assessment environment tells us what the child is capable of if the environment is adapted and what adaptations would help.
  • We bring those adaptations into the classroom and home for optimal visual functioning and across the day access.

Central Focus for CVI: “How Does This Benefit Kids and Families?”

I have the pleasure of working at Perkins School for the Blind as the CVI Program Manager. My supervisor, Ed Bosso, has one central question for me every time we meet:

“How does this benefit kids and families?”

I try to take that question into consideration for everything I do.

  • How does this statement benefit kids and families?
  • How does this interaction benefit kids and families?
  • How does this idea benefit kids and families?
  • How does this CVI training benefit kids and families?
  • How does this assessment benefit kids and families?
  • How does this collaboration benefit kids and families?

There is certainly increasing understanding of CVI since I first learned about it in 2002. Now our task is to stay focused and to use that building energy and building understanding creatively, scientifically and collaboratively to move this field forward in all ways.

To support the medical field, the educational field and research field in understanding CVI, that central question, “How does this benefit kids and families?”, should be the first question we ask ourselves. Absolutely nothing else matters…

Matching the Visual Needs Around Literacy

A student with CVI requires specific functional vision assessment for these unique brain based visual behaviors. Assessment using the CVI Range (Roman-Lantzy 2007) provides the context for accessibility for any type of literacy and learning. The ocular functional assessment will not give you the information that you need to exactly match the media to the student’s accessibility requirements.

For the Student in Phase I, real 3D objects in literacy storyboxes provide the appropriate visual access. These students have limited, if any, central vision use and have limited sustained visual skills. 2D materials are inaccessible.

For these students, I create book around familiar and favored 3D materials. (Parents always have the best ideas as to what these favorite things are). Discussion of the salient visual features (Roman-Lantzy) should start here as well. One book for a student was about the crazy sounds of her wrapper snapper. This was the contents of that storybox with expanded access to other wrapper snapper in other colors.

 

For a student moving into Phase II, I can begin to think about moving to pictures but must move carefully in consideration of the visual “leap” that moving to pictures presents to many students. I find that embedding part of the 3D object onto a 5” X 7” card provides the student with a 3D element but also provides many elements that begin to look like photographs. Again salient feature language should be offered.

 

Here is a sequence I used with a student traveling from Phase I to late Phase II. (The parent reported wrapper snappers as the favorite, and more importantly, the optimal recognized item.)

Real 3D item in a storybox, embedded 3D item on a 5″ X 7″ card and finally a photograph of that exact embedded item now flat in 2D.

CVI Strategy On the Go!

A very creative staff member in the Perkins School for the Blind Secondary Program understands her student’s CVI functional vision. She also knows that the complexity of the shopping experience needs modifications for that functional vision. Without this strategy to reduce complexity, this student would be constant lightgazing to overhead light to avoid this complex visual scene. That would certainly limit his access to learning. She created this portable simplified background. Here is a picture of that student with increased access at the store in a weekly community experience.

In consideration of CVI functional vision, the food package is slowly introduced the student’s best right visual field, at his eye level, with limited verbal prompting and lots of visual response time. It was successful! The student responded by looking, reached up to touch the items and directing them into the bin area at the bottom of the cart.

What a fantastic strategy for this student!

 

 

Predictability for Seeing

Can you find the toothbrush in this picture?

Find the toothbrush?

Of course you can! You have a firm idea of what a toothbrush looks like. You understand your toothbrush and all other toothbrushes. You have visual “toothbrushness”. You have vast experience finding your toothbrush on the bathroom counter.

You did not look on the floor or wall for it because you predicted where it would be found.

How many people missed the huge navy blue handle toothbrush laying right below the mirror?? You did! You missed it because it was not in a predictable place and it did not match the size of toothbrushes that you were looking for.

We all see based on visual prediction. This is why creating strong visual recognition and using predictable routines for our students with CVI is so vital. CVI is about visual recognition. The more predictable routines are, the more the child with CVI can visually predict and recognize the repeated objects and have the best chance of building understanding within more novel and more multisensory contexts.

Here is the article “Why We Miss Objects Right in Front of Us”.

https://www.psychologicalscience.org/news/why-we-miss-objects-that-are-right-in-front-of-us.html

Perkins-Roman CVI Range© Endorsement: Exploring a Myth

The issue of competency for TVI’s serving students with CVI is such an important issue in the field of service to students with visual impairments caused by CVI. There is little coordinated education provided in teacher training programs for TVIs, O&M Specialist and Vision Rehabilitation Specialist. There is no way for parents and school systems to understand whether vision professionals have the extensive education about the visual brain, how the visual system operates, how to assess the unique visual behaviors of students with CVI and how to support the educational teams to create accessible instruction that lead to visual improvements.

One step taken by Perkins School for the Blind and Dr. Christine Roman-Lantzy is to create the Perkins-Roman CVI Range© Endorsement. It requires vision professionals to show basic understanding of CVI: history of the building understanding of CVI, definition of CVI, medical causes, and the visual behavioral characteristics.It also asks applicants to prove competence in using the CVI Range, a widely used tool for assessment.

Christine Roman-Lantzy is the creator of the CVI Range and has determined that it is being used widely but incorrectly leading to incorrect scoring. These incorrect scores lead to lack of identification of students, dismissal of students from service, incorrect goals and objectives and ineffective environmental and learning strategies to support visual access and visual improvements.

A frequently heard myth:

“There is a great deal of money being made by Dr. Roman and Perkins School for the Blind”

I contacted Mary Zatta of Perkins elearning to ask her about this issue. She explained that this is not an automated process and that the administrative fee of $125.00 barely covered the expense of awarding the CVI Endorsement. She outlined the intense staffing and man-hours required by 3 full time staff members to review applications, to review recommendation letters, to contact the source of the recommendations, to monitor progress of the written test, to prepare and provide 2 video case studies per applicant, review those submitted CVI Range scores for accuracy, to ensure the applicant is within the margin or error, to provide feedback, to monitor and answer questions, and to provide unlimited live office hours for questions.

Dr. Roman Lantzy receives no money from the Endorsements.

Given that, $125.00 seems appropriate and reasonable!

Accessible: Visual Recognition in Literacy

Many strategies for CVI that we see on the internet give us suggestions for visual access in literacy for students with CVI but they slip back into ocular suggestions: good contrast, larger size, reduced glare on the reflective page.

What is totally missed is the important concept that CVI is an issue of visual recognition. If the child has no firm idea of the item in real life, in real 3D form, we simply can’t then go to 2D pictures as a symbolic representation of that item.

Without visual recognition of things in the world, the flat, 2D images are merely squares of color and shape not a meaningful picture representation of anything recognizable.

Children may look at the images but the representation remains meaningless and inaccessible

Resending TVI Survey About CVI with Link

We are fellow Teachers of the Visually Impaired who are working with collaborators in a study group to investigate Cortical/Cerebral Vision Impairment (CVI). We are interested in learning more about how our colleagues across the US are gaining knowledge about CVI and how comfortable they feel about addressing this visual condition.

Matt Tietjen and Peg Palmer are TVIs working for BESB (Bureau of Education and Services for the Blind) in Connecticut.

Ellen Mazel is the CVI Program Manager at the Perkins School for the Blind in Watertown, Massachusetts and author of the blog “CVI Teacher.”

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