Nicola McDowell: Adult with CVI

Nicola McDowell is a TVI and O&M Specialist. She also had undiagnosed CVI for more than half her life. She struggled with an invisible disability that she, herself, did not understand.

She describes her experience as living in a “visual wilderness”.

This is her story of her CVI based visual difficulties before and after her diagnosis. This video is about 19 minutes. It is so valuable for us as educators as Nicola clearly describes her visual difficulties and outlines some strategies that help her function as independently as possible. Some areas she describes include:

  • The causes of her visual fatigue.
  • The impact of novelty, new places, people, or materials, that she struggles to understand.
  • The impact of clutter and increased movement in her environment.
  • The ways she uses color to support visual location.
  • The impact of her visual field loss.
  • Her difficulties with facial recognition.
  • Her difficulties knowing where sounds are coming from.
  • Her difficulties in social situations.
  • Her reaction to overwhelming visual and auditory input (the “CVI Meltdown”).
  • How her visual skills masked her cognitive ability.
  • How understanding CVI helped her create strategies for independence.
  • How other people’s understanding of CVI, helped them support her visual needs.

Great food for thought in our service to students with CVI as we provide instruction towards their maximum independence.

https://www.youtube.com/watch?v=H7SoRdMovfI

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CVI Meltdown Stories

I’m sure at this last Thanksgiving holiday, families could share stories of “CVI Meltdowns”.

Students with CVI understand their familiar visual environment, know their familiar people and know their familiar materials. They can tolerate the level of noise and complexity that they are used to.

Holidays are full of Novelty and Complexity, two strong characteristic of CVI. The student’s visual system is bombarded with new noises, people, foods, and places. There is nothing in these new environments that they can recognize and understand well.  They just simply can’t handle all of this. Their behaviors tell us volumes if we are willing to listen.

Here is a link to some stories shared by parents of students with CVI. These stories can help us understand student’s “meltdown” behaviors and create strategies to cope.

https://cviscotland.org/documents.php?did=1&sid=55

Rebecca Davis: Parent Perspective on CVI

This webinar speaks to parents and service providers with great insight to the parent perspective on CVI. Rebecca Davis is a parent of an 11 year old child with CVI. She tells the story of the journey with her daughter with honesty, full feeling and deserved frustration in her attempt to navigate the system to get services to help her daughter. She touches on the federal law as it relates to students with CVI with IDEA. She discusses the need for effective identification, assessment and service to students with CVI. She discusses access for students and how parents can advocate for that access.  She discusses a CVI Action plan to monitor that access by insuring competent practitioners are members of the educational and medical teams. Most of all, she pushes for creation and expansion of the CVI Community of parents to lend a louder and louder voice that demands action.

http://www.perkinselearning.org/videos/webinar/cvi-parents-perspective

Please Consider Helping to Understand CVI

This is an important research opportunity aimed at learning more about CVI. The more we understand the visual brain for children with CVI, the better we can diagnose CVI,the better we can design assessments for CVI and the more we can be assured that our interventions for CVI are working.

The students must be 14+ years old.

Please find more information at https://scholar.harvard.edu/merabetlab/participate

This can’t happen without your help..

 

Phase I: Visual Affects

The child in Phase I may act like a child with total blindness. They might not locate or visually attend to much in their environment. This is not due to visual acuity but to the overwhelming complexity of the environment. They just can’t handle the confusing swirl of kaleidoscopic color and movement.  Because they behave as if they are ocularly blind, they are treated as ocularly blind. Their vision is never considered, assessed or programmed for. With this lack of visual challenge, they go on to develop auditory and tactile compensatory skills and visual skills lag behind.

One student I assessed in the past at age 11, acted in such a way. She felt for objects rather than looking for them. Once assessed using the CVI Range (Roman-Lantzy 2007), it was clear that presented with materials, given 20+ seconds, on the left visual field at eye level, with bright saturated colors against a non-complex background, this student did, indeed have useable vision. The educational team was present for the assessment and films shared with her parents. From that day forward, visual skills were considered, visual expectations appeared on her IEP, and visual skills improved even in two short weeks. She gained the gift of visual access!

Functional visual assessment using the CVI Range would have identified this sooner. She had only ever had an ocular functional visual assessment even though there was nothing wrong with this student’s eyes. The wrong assessment tool led to the wrong conclusion.

When you act visual impaired and are not assessed using the correct assessment tool, you will never gain visual access..

Using Color Highlighting Effectively for Students with CVI

Color is such an important tool to use for students with CVI in all Phases (Roman-Lantzy).

In Phase I, color can support initial visual location using the student’s preferred color. Identifying that preferred color in assessment can be the key to building more functional vision

In Phase II and III, carefully use of color highlighting can facilitate vision for function. Color highlighting in these Phases will help support understanding of where materials are in space, where to place materials and where to reach to grab effectively. It can be used to draw visual attention and to support discrimination using highlighting of salient features in communications systems and literacy. For Orientation and Mobility, color can support distance attention and understanding. Color highlighting must be well understood and well applied for the optimal benefit when building student visual learning.

Check out this Perkins E-Learning Teachable Moment I recently did to learn more!

http://www.perkinselearning.org/videos/teachable-moment/color-highlighting-children-cvi

Scoring the CVI Range Reliability Workshop

This face to face workshop with Dr. Sandra Newcomb is a wonderful and rare opportunity for parents and professionals to practice assessment using the CVI Range (Christine Roman-Lantzy)

The bedrock of service to students with CVI is the accurate assessment of their functional vision using the CVI Range.

This workshop will be held at Perkins School for the Blind in Watertown, Massachusetts on November 3rd and 4th, 2017.

I know when I was learning about CVI, the hands-on practice with other professionals increased my assessment skills and therefore improved the reliability of the results of that assessment of my student’s functional vision. I could be confident that I was scoring it correctly, identifying the correct needs and then providing the correct interventions.

The What’s the Complexity Framework: Designing a Visually Accessible School Day for the Child with CVI

This is an online CVI related class through Perkins elearning conducted by Matt Tietjen.

October 23rd to December 10th, 2017

It provides educators with 35 ACVREPs, 35 PDPs, 35 CEs, or 3 Graduate Credits

Matt is a passionate and gifted practitioner serving students with CVI in all Phases (Roman-Lantzy). He recently developed this framework to help teachers, TVIs, therapists and parents assess the complexity of visual presentations, learning activities and learning environments for students with CVI. I signed up to learn more about this important new tool for my work with students.

Here it the description:

“We will study the characteristic “Difficulty with Visual Complexity” in-depth, explore its central relationship to the other characteristics, and examine the ways in which it can impact behavior and access to education for a child with CVI. Our study of visual complexity will integrate the literature on cortical and cerebral visual impairment.

Participants will learn how to use The What’s the Complexity Framework in order to evaluate the complexity of school environments, tasks and materials and to guide educational teams in creating more visually accessible, appropriate learning activities for children with CVI.

In addition to learning how to rate the complexity level of a particular environment or education task, we will also emphasize the importance of balancing the complexity of the environment and task in each activity, managing cumulative complexity and visual fatigue throughout the school day, assessing interpretation of two-dimensional images, and providing direct instruction in salient features.”

http://www.perkinselearning.org/earn-credits/online-class/cvi-complexity

Improving Vision: Partners in the Journey

I just signed up for this free webinar from Perkins eLearning

October 18th, 2017 11:00-12:00

This is a webinar presented by a TVI who is CVI Endorsed (Perkins-Roman CVI Range Endorsement) and a parent of a child with CVI. It will document the collaborative work of improving vision for a child with CVI.

Can’t wait to see it!

If you can’t participate at that time on that day, the webinar will be available after the session to view.

http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3