Background information to understand CVI

Early Connections Virtual Conference

You’re invited!


Join us for a week-long program June 22-26, 2020 where you can stream inspiring ideas, conversation and more from our presenters right to your home. This free event is designed for parents of children with visual impairment birth to 7 years old, their families and the professionals who support them.


Watch an inspiring keynote and view pre-recorded sessions anytime during the week on topics such as:


All About Switches- Explore activities using simple “cause & effect” technology – switches – to activate a toy, access an iPad or interact with a computer.


Expanding Your Child’s Potential for Visual Improvement (CVI)- For children with Cortical/Cerebral Visual Impairment, learn how a vision assessment and the right supports can foster vision improvement.


Technology at your Fingertips– Explore the technology available for children with visual impairment and multi-sensory needs while learning your rights for getting your child assessed and equipped with the right tools.


And more…


Make sure to register to gain access to an inspiring keynote from parent and TVI Burju Sari and plan on joining us for several ‘live’ Q&A sessions with leading experts from Perkins who can respond to questions you and other parents are asking.

As we are pivoting to a virtual event, this year’s Early Connections Conference will be offered at no cost, and we have refunded the registration fee for anyone who has already paid.


Register now

to reserve your spot and receive event updates and live conference links via email. Please feel free to share this information with other families who would benefit from the opportunity to learn and connect. If you’d be interested in making a donation to Perkins, we’d be grateful.



Color for Object Recognition

We know that CVI is a problem of visual attention and visual recognition. So many children at all severity levels of CVI rely on color to find things in complex scenes, at distance and to identify objects. Check out this article that explains why color is a support for all of us to identify objects in the world around us.


Take a Seat!

Watch your children with CVI move to get into a chair. So often I see this done tactilely. They turn and backup slowly until they feel the chair seat against the back of their legs. I believe this is due to the difficulties judging distance, the visual complexity of this task and visual motor difficulties.

I have had great luck working with the PT and OT to help children understand where the chair is in space and how to move their body into the seated position.

Here is one example. Just by placing red tape on one arm of the modified toilet we could teach the child to find the highlighted armrest of the chair, cross midline, hold the red highlighted area to stabilize their body and to turn to sit. As they improved their skills, we were able to reduce the size of the color highlighting and finally remove it. This provided safe and more independent toileting.



Mirror Neurons and Incidental Learning

Neuroscientist Vilayanur Ramachandran created this Ted Talk to discuss mirror neurons. Mirror neuron’s role in the brain was recently discovered and research about the function of mirror neurons continues. As Dr. Ramachandran mentions in his talk, he believes mirror neuron use is one of the foundations of human interactions and cultural growth.

Mirror neurons, activated by visual observation, allow us to imitate and practice observed actions and to take the perspective of another person as they operate in the world. I couldn’t help but think of mirror neurons in the context of CVI and visual impairments.

For children with CVI, that lack of essential visual access would make mirror neurons function impossible and this must impact the development of all skills and knowledge, all imitation and the development of all social skills. The role of mirror neurons, it seems, is essentially intertwined with incidental learning and perspective taking, the basis of social skills.

A vast amount of information that a child learns about the world is through this visual incidental learning. If I watch a person eating, I am learning through visual skills alone, how people eat. I know the position for eating, the social skills of eating, and the tools used for eating. My brain, using mirror neurons, is practicing eating long before I ever use a spoon myself. I am exposed to this kind of incidental knowledge all my waking hours from birth and I am learning without being directly instructed.

After watching this Ted Talk, ask yourself these questions:

  • Does this not support the need for careful evaluation of what children with CVI really understand and how they understand it?
  • Does this not caution us to think about why children with CVI might struggle with imitation and pretend play? (and caution us to be careful to never use this imitation and pretend play criteria for cognitive assessment)
  • Does this not justify all direct instruction to students with CVI?
  • Does this not justify the repeated need to practice all skills directly taught?
  • Does this not justify the Expanded Core Curriculum for students with CVI?
  • Does this not justify a TVI who understands visual inaccessibility on a child’s educational team?

NEI Seeks Input on Strategic Plan: Make CVI a Priority Area

Take a minute to have your voice heard! Please act today! Tomorrow is the last day!

NEI Seeks Input on Strategic Plan

On November 22, 2019, the National Eye Institute (NEI) issued a Request for Information regarding its Strategic Plan, entitled 2020 Vision for the Future, with a response date of January 8, 2020. Building upon its last Plan issued in 2012, NEI seeks broad input from researchers, clinicians, patients, vision advocates, and the public regarding research needs, opportunities, and areas for emphasis in the next five years––including needs and gaps in research, health, and quality of life. NEI has proposed seven cross-cutting areas of emphasis to foster input, including Genes, Neuroscience, Immune System and the Eye, Regenerative Medicine, Data Science, Individual Quality of Life, and Public Health and Disparities Research.

Parents: share personal stories, and the stating potential impact of increased research on care, quality of life, and well-being of children with CVI.

Clinicians/Scientists: identifying gaps of knowledge such as establishing clear diagnostic assessments and understanding underlying causes, prognosis, risk factors, and development of intervention strategies. Establishing a national data base would be critical for this condition.

Teachers, Early Interventionists, & Related Staff: development of informed practices relating to intervention and (re)habilitation of individuals with CVI.  

Please use the term cerebral/cortical visual impairment (CVI) in your response. There are indeed other possible terms to consider, but it is crucial that the NEI gets as many hits for “CVI” as possible so that they consider this as a single area of focus.

Click on the following link to access NEI’s request, which includes a response section:

Active Learning for CVI: In Support of Learning Concepts

Here is a wonderful article by Rachel Bennett as part of the CVI Overview class at UMASS Boston. The assignment was: Create an Active Learning space or material for a child in Phase II of CVI. Post a picture and explain what you created and why it will be appropriate for this child in Phase II with CVI. Amazing adaptations for accessible learning and self discovery, Rachel!

Active Learning story box for ​Llama Llama Nighty Night

What is this?​ Using a magnet board, tactile schedule icons familiar to the student, a Llama doll, and pre-recorded button, the student can engage in the story sequence in a multimodal way: tactual, visual, and auditory. The yellow button is positioned on the right up off the table using an upside black bin. I recorded the story of ​Llama Llama Nighty Night​, so when the student presses the button, the story will begin. This is an activity that can be completed in phases and with complexity of array is continually assessed. To start, the student can press the button and then hold and engage with the Llama doll. We can then add a tactile schedule icon one-by-one depending on motivation and interest. For example, the child was able to engage with the recorded button, Llama doll, and two schedule icons. He touched and removed the toothbrush when he heard the phrase, “time to brush,” and touched and removed the book when heard, “choose a book.”

Why is this appropriate for a student in Phase II? ​

The activity allows to adjust materials so they are in the student’s preferred visual field (slant board, magnet board, black bin). Complexity of array and background are reduced, along with the use of intentional and familiar items. By making the icons tactile, this allows for the opportunity for sensory balance, using touch as a bridge to vision. Highly saturated, vibrant colors are used for each item. Preferred color is used for the recorded button.

Playing with Light Pucks


What is this?​ Using a magnet board, LED light pucks, and an adhesive magnet squares, several skills can be explored! Each light puck has 5 settings: white, red, green, blue, off. Possible skills to explore: 1 to 1 counting (the puck themselves or with each click when pushing the light), colors, color matching, on/off, positions (under, next to, right, left, above, in between), shape (round, curved, circle), cause and effect.

Why for Phase II?​ Reduced complexity of background, array, object; need for light and color; preferred visual field; materials at near. Tactile exploration allows for sensory balance.

Exploration of the concepts of round, curved, like a circle!

What is this?​ Using a magnet board, various round/curved items, and adhesive magnet squares, the student explores the concept of roundness/curved/like a circle to support future learning of salient features (Roman Lantzy). Some items are familiar (light puck, play orange, orange top of a familiar play container), and some items are new. The student can explore each item tactually, take them off, and place them back on the board. Non examples of round items can be added, such as Tegu magnet wooden blocks. The student can sort/match round items and straight items. The array of items can be controlled depending on what the student visually processes at their comfortable and beginning challenging level.

Why for Phase II?​ Reduced complexity of background, array, object; color; preferred visual field; materials at near; use of some familiar items. Tactile exploration allows for sensory balance.

How long can it be?

What is this?​ Brightly colored rope is placed in an oatmeal container that is painted black. There is a cross slit on the lid and yellow duct tape to reinforce tip of string. The student can pull the string, roll the container, swing the string and container back and forth. Skills: pull, cause & effect, long/short, in/out.

Why for Phase II?
Reduced complexity of background, array, object; color; materials at near; preferred visual field; movement. Tactile exploration allows for sensory balance.

Pully tube fun!

What is this?​ A simple item that can be used to explore various concepts and skills: pull, sound, cause & effect, long/short, round/straight. Using against a black background. Prop black board (card board with black felt) on slant board and hang tube. Hot glue string to one end of the tube and tie string around small holes created on top of board. The student can move the tubes around, pull, and tactually explore. Create a circular shape with one of the tubes and place next to a pully tube that has not been transformed.

Why for Phase II?​ Reduced complexity of background, array, object; color; preferred visual field; materials at near; movement. Tactile exploration allows for sensory balance.

CVI as Part of the NEI Strategic Plan: Please help!

Take a minute to have your voice heard!

NEI Seeks Input on Strategic Plan

On November 22, 2019, the National Eye Institute (NEI) issued a Request for Information regarding its Strategic Plan, entitled 2020 Vision for the Future, with a response date of January 8, 2020. Building upon its last Plan issued in 2012, NEI seeks broad input from researchers, clinicians, patients, vision advocates, and the public regarding research needs, opportunities, and areas for emphasis in the next five years––including needs and gaps in research, health, and quality of life. NEI has proposed seven cross-cutting areas of emphasis to foster input, including Genes, Neuroscience, Immune System and the Eye, Regenerative Medicine, Data Science, Individual Quality of Life, and Public Health and Disparities Research.

Click on the following link to access NEI’s request, which includes a response section:

Advocacy: High School Student with CVI

I completed an assessment for a student with CVI and shared the report with her. Please check out the amazing document she created for her teachers in her own words. Amazing! This is what self advocacy looks like! Self advocacy is a key Expanded Core Curriculum area that should be on every IEP.

  • I know myself and my needs best! It’s important to think about how the people I work with can support me, and share those strategies with you so that I can be successful.
  • Please use this information to help me rely on my vision more and more by setting up the environment in a way that’s easier for me.
  • These are suggestions for how to prevent me from getting too tired too quickly, especially during the school day.
  • My vision might be a little different every day, or even change throughout the course of one day because I am tired.
  • Let’s discuss my CVI schedule that would be helpful for me. This includes taking breaks from using my vision before I get tired so that I can use my vision more and more throughout the day.

Background about Me:
Ophthalmological History

  • I have healthy eyes that don’t explain the level of vision I experience.
  • I have some difficulty with seeing both near and far
  • I have some difficulty seeing color, especially if two similar colors are side by side (i.e. light colored piece of paper on light colored table)
  • It might be harder for me to see in the center of my visual field than on the sides

Neurological History

  • I experience seizures & migraines because of the structure of my brain. This can impact how I see on different days.

My CVI Visual Behaviors

These are specific visual behaviors that the CVI assessment told me about. This is based on things that myself and my mother shared, and what the team saw the day I did the testing.

  • My favorite color, blue, helps to draw my attention visually. I can look at things that have 2-3 different colors.
  • When things move, it helps get my visual attention, especially if it’s out in the room and not very close to me. This might look like someone walking past me in the hallway, or outside an open door. This is not something I can control. I process better when things move gently or slowly instead of quickly.
  • Familiar things are easier for me to look at because I don’t have to use my visual energy to figure them out. When I get tired, its harder for me to rely on my eyes as much, and I prefer to rely on my hearing and touch more.
  • My visual field is the whole area in front of me that I have the potential to see. Think of it as a square that moves with me-it has boundaries on both sides, and on the top and bottom. If I want to see past those boundaries, I have to move my head. I sometimes don’t notice things in the bottom part of my visual field. This is why my cane helps me avoid tripping over things or noticing changes on the floor.
  • It’s easier for me to see from my left side, and it can be difficult to use my eyes together to look in the center of my visual field.
  • Depending on what’s going on around me, it can be easier or more difficult for me to rely on my vision. If there’s a lot of activity, people, or stuff around me, it can make it more difficult for my vision to get an accurate picture of what I’m looking at.
  • It’s easier for me to identify things based on real photographs or realistic drawings rather than sketches or symbols of the object.
  • If surfaces, drawers, shelves, etc. are too crowded, it might be difficult to rely on my vision to find what I need. I do better when I’m looking at a smaller area with lots of space between objects.
  • Places like a busy supermarkets or crowded place can make it very difficult for me to use my vision. Noisy places can be challenging for me.
  • It can be difficult to identify a person, even someone I know very well, when I’m in a crowded place. This is partially because of the amount of information my brain is receiving at once.
  • Light helps to draw my visual attention, especially light from a phone or computer, since its coming from “behind” the information on the screen. Sometimes light can be distracting for me.
  • I have an easier time looking at things that are closer to me, about an arm’s length away or so. If something is moving or makes noise, it might be easier to see from farther away.
  • It can be easier to identify and locate things in a familiar place, like my bedroom. I can learn about new objects using my vision and other senses. It might be easier on certain days and in certain environments (quiet v. loud) than others.
  • It’s easier for me to find things and reach for them when there’s less stuff in the background. It helps if there’s lots of space around the object, good lighting, and a plain background. For example, it might be easier for me to pick up a solid color water bottle from an empty table then to find a multicolored necklace in a drawer with other jewelry.
  • When my eyes and brain get tired, I often rely on my other senses (hearing and touch) to get the information I need.
  • Busy, noisy, and new places can make it more difficult for me to use my vision. It might take me longer, or feel like a lot more work.
  • It helps if I face away from busy places like the door, windows, or other lights. This helps keep movement and light out of my visual field so that I’m not distracted and my brain isn’t working too hard to understand what it’s seeing.
  • Sitting slightly turned to the left at the table helps me see out of the strongest part of my visual field.
  • It might be helpful for people to tell me something about their appearance (hair color, glasses, height) or what they’re wearing in order for me to be able to recognize them later on, even from further away. This is something I might have to ask people to do.
  • Asking someone to say my name before they start talking to me might help me pay attention earlier, so I hear everything they say.
  • It helps me when staff are available to help by giving me information about what’s going on around me.
  • Bright, deep colors can help draw my attention and highlight the important parts of an object, or serve as landmarks when I’m moving around.
  • Blocking out movement and noise will help me from being distracted. This might look like sitting facing away from doors and windows, or in a corner with two walls near me.
  • Continuing to work with me in O&M will help me with strategies for safe movement
  • It’s important to take breaks before I feel tired or “overloaded”. I have to give my brain time to process what I’m looking at, especially if it’s something new.
  • Organization, organization, organization! The more consistent and easy to navigate an area is, the more independence I will have.
  • It helps if I use objects with 1-3 colors, use familiar items when I’m learning about something new, use the “real thing” instead of drawings of something so that it’s easier to understand, use backlighting from iPads, laptops, etc. when looking at photos and pictures of things and use a blue line marker can help when I’m reading print.
  • Slow movement can help draw my attention.
  • Taking my time when learning new information, taking breaks, etc. can be helpful, especially in the afternoon when I feel more tired.
  • Using a slant board can bring things into a visual field that’s easier for me to see.
  • Organization, routine, and consistency are my friends when I’m learning!

Perkins 5th Annual Symposium

The Perkins 5th Annual Symposium this July 11th and 12th, 2019 was a huge success! The first day there were three panels. The second day, workgroups formed to discuss the needs in each topic.

The first panel, Medical and Research, laid out the current state of medical understanding and research about CVI. The panelists lead by Lotfi Merabet, OD, Ph.D., were Sharon Lehman, MD, Barry Kran, OD, FAAO, Terry Schwartz, MD and Corrina Bauer, Ph.D.

The second, Assessment and Promising Practices which I led, featured Matt Tietjen, M.Ed, Sandra Lewis, Ed.D, Tammy Reisman, CAES, Christine Roman-Lantzy, Ph.D.

The third, Family Education and Advocacy, lead by Tracy Evans-Luiselli, Ed.D., featured Rachel Bennett M.Ed., Bobby Silverstein, Esq., Barbara Raimondo, Esq. and Monika Jones, Esq..

Repeated themes shared overwhelmingly throughout the panels:

  • Kids can’t wait. They are in our homes, offices, and schools now in overwhelming numbers. Those numbers will continue to grow in the United States and across the globe.
  • Parents and students are critical partners.
  • Researchers, medical professional, educators and parents need more information about CVI.
  • CVI is complex and needs a team approach for diagnosis, assessment and planned intervention.
  • Individuals with CVI are unique and deserve unique considerations in assessment and interventions.
  • We need more assessment tools and more researched interventions that work for learners with CVI.
  • The infighting about the name: cortical, cerebral or neurological visual impairment is a roadblock to understanding, identification, assessment and service to individuals with CVI. Fighting about the name will impede progress in all areas especially in advocacy at the government level.
  • Together with consensus, we can move this forward. If we are fractured, we will stall efforts for research, assessment, advocacy and service to students.

The overall issues were identified and workgroups formed to tease out details in the four areas of Medical/Research, Assessment and Interventions, Advocacy and the Higher Education training of vision professionals to serve students with CVI.

With Perkins support and commitment, the work will continue from the identified collective wisdom of the workgroups.