Becoming a Team to Build Understanding of CVI Burju Sari, M.Ed., CTVI Ellen Cadigan Mazel, M.Ed., CTVI Omer Sari, RCK

*Omer’s Birth History 31 weeks of gestational age 6 weeks of NICU stay First ultrasound showed brain bleeding Second ultrasound showed that bleeding stopped At 1 month- IVH- stage III-IV

*Visual History Not looking at faces Slow visual processing Down gazing Frequent naps (rests) Gazing at lights Diagnoses of strabismus and prescription glasses

*“I know something is wrong” Video of “#1 Crib Complexity” Video of stroller: “#2 Twins”

*Misdiagnosis Autism (EI) Cognitively impaired (Infant-toddler follow up)

*Perkins Infant Toddler At 6 months- Ellen’s first visit for FVA CVI training Infant toddler group on campus & parent group Support Sharing experience Learning more

Omer’s visual skills: 6 Months Score 1-1.25 Color: Looking at red, solid colored items. Locating red faster and sustaining longer Movement: Like shiny things. Movement gains a brief look. If items don’t move, he doesn’t glance at all. Hates places with many people moving around. Latency: Difficult to gain visual attention. Brief when it occurs.

Omer’s visual skills Visual field: Left visual field is stronger. Looks down to the left. Light: Consistent lightgazing. Visual novelty: Limited number of items are visually regarded Complexity/Latency: Napping or “playing possum”.

Video: “#3 Lights”

Omer’s visual skills Complexity: Fussy in busy places. Complexity: Only quick glances towards faces. Looks quickly away when voice is introduced. Visual Motor: Less movement of hands. Visual Reflexes: No blink to touch or visual threat.

Adaptations: Color: Movement: Use red as highlighting color Feeding: bottle and spoon are color highlighted Movement: Reduce access to distracting environmental movement Use movement to draw visual attention

Adaptations: Latency: Visual Fields: Slow down and give him time to locate items Visual Fields: Present items in peripheral, left visual field. Present familiar, lighted and moving items in weaker right visual field.

*Adaptations: Complexity Use single colored items Use books with storyboxes Provide plain backgrounds Reduce other sensory inputs (sounds, touch, vibration) while looking Provide multisensory learning with one sense challenged at a time.

*Adaptations: Lightgazing Distance Eliminate distracting light sources Use light to draw visual attention to meaningful items Distance Provide consistent items at 12”-18” to play with. Narrate distance events.

Adaptations: Novelty Visual Motor Standardized presentations Familiar toys Familiar routines Visual Motor Active learning

Reaching: Video: “#4 No VM” Video “#5 VM to sound”

Improvements 9 months: Score 3.75-4 Looks at mom (important for a mom) Expanded his toy selections Breaks away from light sources to look at toys Looks at more novel materials is they match color, light, shape. Red still favorite but expanding color interest.

Improvements 9 months: Score 3.75-4 More visual interest and visual curiosity Looking at 2-3 feet if something is moving. More social More reaching to items in his environment: Very dependent on sound More visual stamina.

Omer: age 3 Looks at all colors and multicolored items. Sustains gaze on materials Looks at faces but “look through you” quality. Very social. Smiles at everyone. Only looks at light if he is tiring to walk in his walker Looks at stable items around him at 3-4 feet. Looks at distance movements.

Clearly on Task Cognitively Video “#6 ABC”

Omer: age 3 Likes to look at books Looks immediately on presentation of materials Blink reflex present Can look at noisy toys.

Video “#7 Complex sticks”. Video “#8 sticks black” Video “#9 walking outside”

Scoring wrong: Age 3 Scoring Too High Looking is not understanding Using CVI Range statements as the only basis for understanding CVI Characteristic can disappear from the CVI Range statements but that visual characteristic still impacts learning. Visual characteristics all remain important for visual understanding and function.

Thinking Characteristics are Resolved Looks at all colors and multicolored items. Looks quickly Looks at faces Looks at distance at times

“I see the impact of his CVI everyday” Color: Still Important He asks for red clothes. He has a red bike. Playing a board game he automatically picks red color side of the game or symbol.

Color: Still Important He picked red glasses frames. Going to a party or somewhere busy, he asks mom to wear red or orange. Likes other colors too like blue. Brother in red bumper cars. Picked Mario as a Halloween costume with lots of red and blue.

Color: Still Important

*Movement: Still an Issue Movement helps location against complexity Movement helps him find things at distance Movement distracts him in peripheral visual fields.

Latency: Still an Issue How we know Visual fatigue Longer time to find against complexity Longer time with novel items Longer time at distance Longer time for facial recognition.

Reasons for collaboration: *Transition to School Reasons for collaboration: IEP: nonsense words (Police car) Classroom teacher taking classes: preschool Needed services

*Misconceptions about high Phase II and III Social emotional challenges Cognitive impairment Cognitively fatigued Distractible

”I see the impact of CVI everyday.” *What is left over now? ”I see the impact of CVI everyday.” Color supports understanding: Likes and picks “red” color Latency: Visual fatigue and for understanding new things Complexity: Just realized our dog has a face

*What is left over now? Novelty: His brother’s bike is different Novelty, Complexity: Cutting nails Distance viewing: Can’t see the kite Complexity: Facial recognition is still difficult

Video “#10 Complexity Cheerios Video “#11 Not looking crowd”

*What happens in new places Gets quiet Gets fatigue easily Head down Hates field trips Difficulty recognizing people from different nations

The more you learn about CVI the harder it is to explain.

*Self Advocacy Understanding His CVI (Video: Omer explaining his own CVI)

*Self Advocacy: Building his advocacy skills: Less complex/busy Ask to be closer to targets Description of distance events/situation Frequent breaks

What expanded learning for team around CVI? Matt Tietjen’s “What’s the Complexity” framework CVI Scotland website Perkins CVI Hub Perkins Elearning Christine Roman Lantzy: Cortical Visual Impairment: An Approach to Assessment and Interventions 2018 Dr. Gordon Dutton: Vision and the Brain

Becoming a Team to Build Understanding of CVI The End Burju Sari, M.Ed., CTVI Ellen Cadigan Mazel, M.Ed., CTVI