Background information to understand CVI

Perkins Launches CVI NOW!

In November 2018 and July 2019, Perkins School for the Blind convened a Cortical/Cerebral (CVI) COLAB and CVI Symposium, to tackle the “wicked” problem of CVI. A COLAB as defined as “a gathering of stakeholders who together share, learn, and create a deep understanding of a complex problem” (Demosophia LLC). International and national stakeholders included parents, vision professionals, vision researchers, ophthalmologists, neuro-ophthalmologist, optometrists, university personnel, agency personnel and CVI advocates came together to discuss the triggering question. “What do you believe are the challenges that impede progress regarding CVI?”.

From these CVI meetings, Perkins developed a more expanded and more inclusive understanding of CVI and became committed to sharing that knowledge with the wider community. Perkins is committed to sharing what we know today and to keep an eye on the latest research and promising practices for serving learners and families impacted by CVI.

In that effort, Perkins today launched the CVI NOW website and, for parents, the CVI Now Facebook page. Check it out and if you are a parent, join the Facebook page that’s just for families.

Go visit www.perkins.org/cvi-now and take a look!

Dr. Lotfi Merabet: Conversations about CVI with Dr. John Ravenscroft

Check out this conversation between Dr. Lotfi Merabet and Dr. John Ravenscroft, two leaders in the field of CVI. The CVI field needs research now more than ever as the educational programming and assessment claims continue to rise with limited understanding of how the brain even works.

There is not one size fits all for our students for assessment protocols, environmental needs or learning access needs because each child’s brain is different, each brain injury is different, each brain has different experiences and each brain rewires uniquely. CVI is as complex as the brain and to simplify CVI means children are left out, not fully assessed and not fully served.

Check out Dr. Ravenscroft’s other conversations with other theorists and practitioners. There is a wealth of knowledge!

National Institutes of Health: CVI

This just published by the National Institutes of Health. There is growing awareness about CVI in the medical community and in organizations that provide funding sources. This appears on their website.

Great things happening for the kids I love! 

https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies

Learning From Home

Listen to the American Council for the Blind’s Podcast: Learning From Home. This addresses the essential partnerships that school based team members must have with home based team members in the education of children with CVI during this pandemic. It stresses the importance of natural routines, consistency, collaboration and extended learning with direct teaching and supplemental activities.

 

 

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 https://www.perkins.org/get-involved/events/early-connections

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.

https://pure.mpg.de/rest/items/item_1468179_8/component/file_1468180/content

 

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?

https://www.ted.com/talks/vilayanur_ramachandran_the_neurons_that_shaped_civilization?referrer=playlist-how_your_brain_constructs_real

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:  https://www.nei.nih.gov/form/rfi