Part 1

1. The CVI a community of ideas Part 1 mbrella Matt Tietjen, M.Ed., CTVI https://www.flickr.com/photos/131260238@N08/16606777908

2. Poll: What Color is the Dress?

3. How do our student’s see? “Despite the feeling that we’re directly experiencing the world out there, our reality is ultimately built in the dark, in a foreign language of electrochemical signals…There is no single version of reality. Each brain tells its own truth.“ - David Eagleman “Seeing is never anything but electrical signals streaming into the darkness of your skull.” - David Eagleman https://www.flickr.com/photos/fbobolas/3822222947

4. How do our student’s see? =

5. How do our students see? Accurate representation of the world in front of us Our eyes send raw data to our brain Our brain constructs meaning Images from Project Prakash (National Eye Institute)

6. Our Journey… What does the world look like in between these two images? No simple answer. We can’t know for sure but we can try our best to imagine. Project Prakash: National Eye Institute

7. Our Journey… “I now like to think of vision as effectively being an ever changing mental representative construction of the external environment, the nature of which is dictated by the character and  processing capacity of the brain. It is the true nature of this  mental image that practitioners need to envision for each affected child, so that they can inhabit their visual worlds in a manner analogous to virtual reality, and ’see’ out through the affected child’s eyes.” - Gordon Dutton

8. My Journey… “What’s a cortical?”

9. Could it be… • A mysterious part of the retinal pigment epithelium? • Somewhere near the zonules of zinn? https://pixabay.com/en/eye-diagram-eyeball-body-pupil-39998/

10. My Journey… CVI Competence What’s a cortical? https://pixabay.com/en/photos/location/?image_type=vector https://pixabay.com/en/asphalt-drive-road-highway-157687/

11. What did I have by my side? CVI Books Some wonderful mentors Some great books https://pixabay.com/en/box-storage-file-carton-office-23639/ https://commons.wikimedia.org/wiki/File:Mentor-Mentee-01.svg

12. First leg of my Journey http://media.wix.com/ugd/f88b42_432b79fb375a4d37b9ed1b5714e2a6b8.pdf https://www.amazon.com/Cortical-Visual-Impairment-Assessment-Intervention/dp/0891286888

13. First Leg of My Journey ? • 10 characteristics • Difficulty with complexity (of object, array, faces, sensory environment, etc.) • Cortical Visual Impairment • Ventral/Dorsal Stream • Simultanagnosia • Prosopagnosia • Object form agnosia • Cerebral Visual Impairment

14. Lost in the fog • Initial Misconceptions/stumbles: • Maybe these two resources are totally unrelated, describing two totally different visual conditions – cortical and cerebral. • Maybe Dr. Roman-Lantyz’s books is describing impairment of more basic, early visual functions and Dutton’s article is dealing with higher-level visual functions (i.e. dorsal and ventral stream dysfunction). • It seemed that most of the characteristics were resolving in many of my students. I was scoring many children in the 8-9 Range.

15. The fog is lifting • Attended a week-long Phase III CVI Bootcamp with Christine Roman-Lantzy in Maryland, spring 2013. • Read “Visual Impairment in Children due to Damage to the Brain” by Gordon Dutton in 2013 • Learned that: • The CVI characteristics rarely resolve, even in Phase III. They just present differently and more subtly. • The CVI Range covers both basic and higher level visual functions (dorsal/ventral stream) • It’s all about Visual Complexity (Many of the 10 Characteristics center around it; 21 of 51 Questions on Dutton Inventory of Questions deal with complexity. • So much overlap and agreement in the literature on cortical and cerebral impairment. So many connections! CVI Range Characteristics from Roman-Lantzy, 2018

16. Before we Get Going • Are Cortical and Cerebral VI the Same Thing? Not exactly… • Sometimes used interchangeably: Geography (Cerebral in Europe, Cortical in North America) • Sometimes used more precisely to describe two different conditions based on anatomy (earlier and later visual processing) or functional vision. • Lotfi Merabet: These terms aren’t mutually exclusive. Not unusual to have elements of both. Maybe it’s really “CCVI.” (Merabet, 2015) • “There is a limit to parcel-ating and labeling…we can’t be dwelling on all these titles… At the end of the day we need to be taking care of these kids.” - Lotfi Merabet, 2015

17. Before we Get Going • I have found that an integrated understanding of the cortical and cerebral VI ideas has allowed me to feel competent in my ability to take care of my students, their families and teams.

18. Before we Get Going • My approach to integrating Cortical and Cerebral ideas: • CVI Range and the 10 characteristics (Roman-Lantzy) are my home base and foundation • In integrate the corresponding ideas from the cerebral literature into that framework. • This presentation represents just one TVIs attempt to integrate the ideas from both schools of thought. My way is not the only way!

19. Difficulty with Complexity of Object • Many children with CVI have difficulty with complexity of the object(Roman-Lantzy) • Common Misconception: this characteristic involves only the ability to look at different types of objects. • Difficulty with Complexity of objects also encompasses ability to interpret objects, images, symbols, letters, words, numbers, etc. • By mid-phase II and beyond I am much more concerned with “can the child interpret?” versus “Can the child look?” CVI Range Characteristics from Roman-Lantzy, 2018

20. Difficulty with Complexity of Objects Reading about Difficulty with Complexity of Objects in the literature on Cerebral Visual Impairment: • Visual Agnosia: Inability to interpret visual information. Greek (lack of knowledge) • Several types of visual agnosia related to “Difficulty with Complexity of Objects,” or ventral stream impairment: CVI Range Characteristics from Roman-Lantzy, 2018

21. Difficulty with Complexity of Objects • Apperceptive agnosia: inability to perceive shapes and objects. May not be able to convert the raw data from the eye into a coherent object. Individuals can see an object or image but are unable to draw it (Humphreys, 1999). • Associative agnosia: may be able to perceive object or image but cannot link it to previously seen visual information (visual library) in the ventral stream. Cannot attach meaning to it or identify it (Humphreys, Riddoch, 1999) • Visual form agnosia: Another term often used to describe inability to name or identify objects or images (Farrah, 2004). • Integrative agnosia: Difficulty perceiving objects as perceptual wholes. Individuals tend to “over-segment” objects, seeing it as a collection of separate features rather than as a coherent whole (Humphreys, Riddoch, 1999) Do my students have “agnosia?” Most of my students, the visual impairment is not localized but rather more global. I think of them as demonstrating agnosia-ish visual behaviors that are part of their global CVI.

22. Difficulty with Complexity of Objects “Bus driving down the road” “Bicycle” “Elephant” To be Resolved: “Visual fixation and object discrimination, recognition or identification of the target is commensurate with the age of the individual.” (CVI Range Rating II, Roman-Lantzy, 2018) CVI Range Characteristics from Roman-Lantzy, 2018

23. For the suitcase • The Man who Mistook his Wife for a HatOliver Sacks • The Mind’s Eye Oliver Sacks • A Case Study in Visual AgnosiaHumphreys & Riddoch (amazon.com)

24. Difficulty with Complexity of Faces • Many children with CVI have difficulty looking at and/or recognizing faces, facial expressions, gender, etc. • Related term from the literature on cerebral visual impairment is prosopagnosia (lack of knowledge of the face). (Lueck & Dutton, 2015) • Like recognition of objects, recognition of faces is a ventral stream function. (Lueck & Dutton, 2015) CVI Range Characteristics from Roman-Lantzy, 2018

25. Suitcase book • Understanding Facial Recognition Difficulties in children: Prosopagnosia Management Strategies for Parents and Professionals Nancy L Mindick www.amazon.com

26. Difficulty with Complexity of Faces What is it like to have difficulty with complexity of faces? That That Is Is That That Is Not Is Not You know what each word means above, but what does the entire sentence mean? Until you put some punctuation in, then it has perfect meaning. - Jim Cooke (from Mindick, 2010) CVI Range Characteristics from Roman-Lantzy, 2018

27. Difficulty with Complexity of Faces What is it like to have difficulty with complexity of faces? That that is, is. That that is not, is not. “without punctuation it’s just a bunch of words. I look at a face, I see the face and see the eyes, but it’s just a bunch of features, means nothing. So it’s almost as though the punctuation is missing when I look at a face.” - Jim Cooke (From Mindick, 2010) CVI Range Characteristics from Roman-Lantzy, 2018

28. Difficulty with Complexity of Array • Many children with CVI have difficulty with complexity of the Visual Array (Roman-Lantzy, 2018) • This characteristic refers to difficulty in finding or noticing a visual target in the presence of competing visual information. • Often referred to as simultanagnosia, or the inability to see multiple things at once. Involves bilateral damage to the posterior parietal lobes, which are involved in visual attention and awareness(Dutton & Lueck, 2015) • People with simultanagnosia (or Balint’s Syndrome) may look at a visual scene and only see one or a few objects at once. Some affected individuals have described objects in a scene fading in and out of visual consciousness randomly so that only one or two are seen at a time (Dutton & Lueck, 2015) CVI Range Characteristics from Roman-Lantzy, 2018

29. Difficulty with Complexity of Array • YouTube video of man with Balint Syndrome (link provided in this week’s session map). https://www.youtube.com/watch?v=4odhSq46vtU&t=14s • In lab test, man can only see one object at a time. At one point he sees an equation on the board several feet behind the evaluator instead of the two objects the evaluator is holding up in front of him. • Results indicate that this man has difficulty with complexity of array (simultanagnosia in this case) and cannot always separate foreground from background. CVI Range Characteristics from Roman-Lantzy, 2018

30. Difficulty with Complexity of Array Phase I Phase III Phase II Rating II (Roman-Lantzy, 2018): “Targets are located against any background commensurate with the age of the individual.” CVI Range Characteristics and Phases from Roman-Lantzy, 2018

31. For the Suitcase… Visual Agnosia The Cognitive Neuroscience of Vision

32. Movement & Blindsight • Cortical: Most children with CVI alert to visual movement and tend to be attracted to objects that move over those that are stationary. Often our children seem to see moving targets better than stationary targets (Roman-Lantzy, 2018) • Cerebral: Due to a separate visual pathway that travels from the midbrain to the parietal region (dorsal stream) even a person with significant damage to their primary visual cortex may still be able to notice moving targets. Video: “The Blind Woman who Saw Rain.” https://www.youtube.com/watch?v=9ABQ-U6V0tY&t=6s CVI Range Characteristics from Roman-Lantzy, 2018

33. Movement & Blindsight From the Literature on Cerebral Visual Impairment: • The preservation of the ability to see movement in spite of damage to the visual cortex is often referred to as blindsight. • People with blindsight alert better to moving targets and also may be able to “see” when they are moving through an environment(i.e. “travel vision”) (Dutton & Lueck, 2015) • We might think of our student’s behavior as “blindsight-ish,” meaning that seeing movement is a relative strength compared to the ability to process the static visual world. • Akinatopsia (difficulty processing movement) is something different. This condition is an impairment in the higher level conscious perception of moving objects (i.e. seeing a fast moving car, ball, etc.) and can occur to varying degrees in children with CVI. (Dutton & Lueck). It is possible to have degrees of this condition while still maintaining the lower level ability to alert to a moving object in the periphery, as in blindsight. CVI Range Characteristics from Roman-Lantzy, 2018

34. For the suitcase Sight Unseen – Milner and Goodale www.amazon.com

35. Visual Motor • Children with CVI often have difficulty using their vision to guide motor actions such as reaching (Roman-Lantzy, 2007). • Cerebral Visual Impairment Literature: The dorsal stream (“vision for action”) plays a major role in integrating our visual map of space with proprioceptive input from our limbs so that we can use vision to guide reaching, stepping, and other motor tasks. “Optic Ataxia” is a condition in which this system is disrupted and a person has difficulty using vision to reach, step or perform other motor actions accurately. (Dutton & Lueck, 2015) • Parietal Reach Region • In my experience children in Phase III (Roman-Lantzy) often still have difficulty with more fine visual-motor skills (buttoning, writing, zipping, etc.) and have difficulty using vision to guide movement of lower extremities, as well. CVI Range Characteristics from Roman-Lantzy, 2018

36. For the Suitcase • Disturbances of Visual Orientation (Gordon Holmes, 2018) • In-depth discussion of difficulty with visually-guided reach, visual-motor, optic ataxia https://www.ncbi.nlm.nih.gov/pmc/articles/PMC513529/pdf/brjopthal01013-0001.pdf

37. Cortical and Cerebral CVI Range Characteristics from Roman-Lantzy, 2018

38. Cortical and Cerebral CVI Range Characteristics from Roman-Lantzy, 2018

39. CVI Range Characteristics from Roman-Lantzy, 2018

40. Keep Filling that Suitcase! www.amazon.com

41. My Virtual Journey… Websites • Little Bear Sees • West Virginia State Department of Education – CVI Special Topics • CVI Scotland • Perkins eLearning Webinars • Google Scholar (including foundational “cortical” articles by James Jan, Groenveld, etc.) • Texas School for the Blind and Visually Impaired – CVI • Paths to Literacy • Strategy To See Blogs and Social Media • CVI Neuroplasticity Research Group (Facebook) Amazing Lecture by Lotfi Merabet: https://www.youtube.com/watch?v=H-KjDQnbR8I • Nicola McDowell’s Blog (CVI Scotland) • Christine Roman-Lantzy’s Blog: http://cviresources.com/services/blog/ • CVI Teacher (Ellen Mazel) • Gordon Dutton’s Blog (CVI Scotland) • Start Seeing CVI (Blog and Facebook)

42. If I could only fit two…

43. “CVI is a public health crisis” – Lotfi Merabet We need to get here and keep going! CVI Competence What’s a cortical? https://pixabay.com/en/photos/location/?image_type=vector https://pixabay.com/en/asphalt-drive-road-highway-157687/

44. References Eagleman, David. (2015) The Brain: The Story of You. New York, NY. Pantheon Books Farah, Martha J. (2004). Visual Agnosia. Boston: MIT Press Humphreys, Glyn W. "Integrative agnosia." Case studies in vision (1999): 41-58. Lueck, Amanda H., and Gordon N. Dutton, editors. (2015) Vision and the Brain: Understanding Cerebral Visual Impairment in Children. New York: AFB Press. Merabet, Lotfi. (2015). Comparing How the Brain Rewires Itself in Ocular and Cortical/Cerebral Visual Impairment (CVI). Retrieved from: https://www.youtube.com/watch?v=H-KjDQnbR8I Mindick, Nancy. (2010). Understanding Facial Recognition Difficulties in Children: Prosopagnosia Management Strategies for Parent and Professionals. Philadelphia, PA. Thomson-Shore, Inc. National Eye Institute: Project Prakash Enlightens our Understanding of vision. https://nei.nih.gov/news/scienceadvances/discovery/project_prakash Roman-Lantzy, Christine. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention. 2nd Edition. New York: AFB Press, 2018. Print.