Background information to understand CVI

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

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..

 

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

Rebecca Davis: Parent blog

Please check out the latest parent blog: CVI Momifesto at

https://cvimomifesto.com/?wref=bif

The subtext of the blog is “Building a Community of Parents of Children with CVI”

Historically, it is the work of parents, organizing and advocating that causes changes in the service to children. I think of the work of parents of children with autism as they organized and advocated for better research, better identification, better funding and more paid services for their children. The parents of children affected with RETT syndrome and related disorders are another wonderful model group for parent advocacy. They came together to advocate for awareness of RETT syndrome, RETT research and funding and they created assessment centers all over the country to serve their children.

Parents with children affected by CVI need to do the same. They need to come together with one voice that will bring the topic of CVI to the forefront. I monitor many Facebook pages that parents have created. They share heartbreaking stories of navigating the misinformation from medical professionals and educators as they seek the best services for their child.

The information about CVI is now decades old and building everyday. Why does it fall on the shoulders of parents with the least free time to organize this effort to help medical professionals and educator understand CVI and how CVI affects learning?  Professionals who understand CVI are out there but they are not sitting at your child’s IEP. That is where the advocacy must begin.

As parents and professionals who understand CVI, let’s begin to build the documented evidence for the IEP process that fosters the diagnosis of CVI. Let’s make sure the students are assessed using the correct tools such as the CVI Range (Roman-Lantzy). Let’s make the CVI Endorsement (through Perkins School for the Blind) mandatory for professionals working with each child. Let’s make sure there is not “vision time” but consideration of visual needs around the day and across the curriculum.

Check out Rebecca’s blog!

 

Computer Object Recognition

I saw this Ted Talk about computer object identification.  It got me thinking about its use for people with CVI. It can programmed to find specific classes of things, creates a box around the object and provides a written label. If it could be programmed with an auditory label, it would be so helpful for people with CVI to find items in complex situations. (Find my shoes”, “Who is this person?”) Some of the uses shown here would be too complex but with a specific application for people with CVI, this seems like a great tool! If it could be programmed to identify people, that would help with facial recognition difficulties too.

Wonderful to think about technology for people with CVI since complexity remains an issue even into Phase III (Roman-Lantzy)!

Joseph Redmon

How computers learn to recognize objects instantly

How Do You Know If You Have a CVI Competent Teacher of Students with Visual Impairments? Importance of the Perkins-Roman CVI Range Endorsement

How would parents, teachers and administrators know if they have a teacher of students with visual impairments (TVI) who is knowledgeable and competent to work with children with CVI? This has been huge and frustrating problem for years.

TVIs have been slow to educate themselves to serve these students with CVI effectively even when their caseloads have shifted to include many students with CVI. TVIs might attend a lecture or two and mistakenly think they have “competency” in CVI. The TVI who attends a weekend lecture about CVI, leaves with partial knowledge and few abilities to accurately assess, accurately program or to accurately create appropriate interventions for their students with CVI. They are even more dangerous than the TVI with no understanding!

Most graduate teacher training programs for teachers of students with visual impairments do not include CVI as a core competency area. Due to this, even now, new teachers of students with visual impairments leave graduate programs with little to no understanding of CVI yet take jobs in the field where 60% or more of the students have CVI!

To solve the problem of who has CVI competence and who does not have have CVI competence there is now the Perkins-Roman CVI Range Endorsement in place at Perkins School for the Blind: http://www.perkinselearning.org/cvi-endorsement

For this Perkins-Roman CVI Range Endorsement, a teacher of students with visual impairments must prove their competency for CVI. They must take a knowledge test about CVI. They must prove experience with students with CVI by providing letters of recommendation. They must prove their ability to assess 2 students seen in videos using the Christine Roman-Lantzy CVI Range. The CVI Range is the only assessment tool for CVI with reliability. (See Dr. Sandra Newcomb: Reliability of the CVI Range Journal of Visual Impairment & Blindness, October 2010, © 2010 AFB).

We now have a way to “check” a professional’s competence in a directory of endorsed professionals: http://www.perkinselearning.org/cvi-endorsement/specialists?field_location_taxonomize_terms_tid=All&field_name_address_country=All&page=2

I always want a competent professional to work with my students with CVI and now add this statement to my report recommendation list:

Recommendations:

Services of a Certified Teacher of Students with Visual Impairment (CTVI) who is CVI Endorsed:

John will benefit from direct and consult vision services weekly from a certified vision professional who understands CVI.  To assure this competence the TVI must be CVI Endorsed: See the Perkins-Roman CVI Range Endorsement http://www.perkinselearning.org/cvi-endorsement Look in the search bar to access the directory of endorsed professionals: “Search for Specialist”. This will assure that the assigned TVI understands CVI, understands the effects CVI have on John’s learning and is trained to assess CVI using the Christine Roman-Lantzy CVI Range. John will benefit from environmental and materials modifications, methodologies and accommodations to support his visual functioning around all characteristics of CVI. The TVI will help build compensatory skills throughout the curriculum and support building advocacy for John’s independent learning. Every year at change of classroom, the TVI should provide an overview of the concept of CVI and provide a detailed explanation of how CVI effects John’s visual functioning.

To find endorsed professionals, you can visit the directory of professionals that have achieved this competence. It is growing daily nationally and internationally.

 

Teachable Moment: Color Highlighting

I did this Teachable Moment for Perkins School for the Blind. It discusses some ideas of how to use color highlighting to help with visual motor skills for children with CVI.

You can find it in Perkins eLearning

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