diagnosing CVI

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!

 

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Importance of Color

So many times I see professionals mark the CVI Characteristic of “Color” as “Resolved” as soon as a child looks at more than a single favorite color. (Roman-Lantzy CVI Range 2007).

This is a great misconception. Marking the Color characteristic as “Resolved” means that color is no more important to the child than to a typically developing peer. (Roman-Lantzy)

Color remains important for many children assessed much higher in the CVI Range. I recently assessed a child in a typical kindergarten. Careful interviewing of parents and his team plus observations and direct assessment uncovered this important information about this child’s color preferences:

Parent/Team Interview (Roman-Lantzy):

  • This child’s parents immediately report “red” as a favorite color. He always picks red clothing, red toys and wants to paint his room red.
  • This child’s teacher immediately was able to state that “red” was this child’s favorite color. When I asked this teacher whether he knew the favorite color for other children in the class, the answer was “no”. (This color preference for this child with CVI was strikingly evident for a teacher with 14 other students in the class!)

My observations and direct assessment revealed:

  • This child looks at all colors and colored patterns.
  • This child does have a distinct preference for the color red for visual attention at near and distance.
  • This child was observed visually locating and then following a peer dressed in red or orange when told to line up, when evacuating the building in a fire drill and when outside on the playground.
  • Told to pick items for decorating a snowman in Art, this child walks completely around the table to chose a red ribbon for the scarf.
  • Walking the hallway to Art, this child was observed to have increased visual attention to red items in the hallway on all planes (materials on the floor, wall, above to the red Exit signs and to children dressed in red walking by).
  • In the Speech session, this child picks red pirate game piece and has great sustained visual attention to the red, lighted spinner.
  • Asked to pick a marker for an activity, this child picked the red marker every time.
  • Asked about a bowl choice, he asked for the red one.

If we know this child has such a strong color preference, we can infuse this color into activities that are difficult for him:

  • Added to the locker hook to hang up his coat
  • Added on the classroom sign-in sheet to highlight where to place his name.
  • To draw his visual attention to salient learning features.
  • Added to the envelop edge to help him place the paper into the folder.

Missing this vital information about color, misses a great learning accommodation for visual functioning.

 

A Primer on Cortical Visual Impairment

This is a great article about CVI written by Sharon S. Lehman, MD, Wilmington, Delaware.

I am so pleased to see this in a medical magazine, “Review of Ophthalmology”!

This is the subtitle:

“We owe the parents of children with CVI a better explanation of their child’s condition. Here’s a look at how to start providing one”.

For too long, the ophthalmologists have not “owned” CVI. They have focused on the ocular system and completely disregarded the obvious lack of visual skills in the child sitting before them. They have referred their small patients to the neurologists where the families still found no answers. Most upsetting to me it’s the lack of referrals for these children to teachers of students with visual impairments. So much of learning is visual so help from a knowledgeable TVI is key to visual improvements and visual access.

Take a look: https://www.reviewofophthalmology.com/article/a-primer-on-cortical-visual-impairment-42791

Overlooking Children in Phase II and Phase III (Roman-Lantzy)

I hear too often that a child can’t have CVI because they can look and reach or can move through the environment. This is incorrect. Children in Phase I are very visually impaired and appear blind. It is easy to understand their visual impairment even for untrained people. Children in Phase II and Phase III, have some visual abilities. The untrained person sees these visual behaviors and mistakenly believes the child can use their vision effectively to learn. It is essential to have an assessment using the CVI Range (Roman-Lantzy 2007) before deciding whether a child has CVI or not. It is only through rigorous assessment around the 10 characteristics that we can determine a child’s functional vision. It is always the children in Phase II and Phase III that are overlooked and under-assessed. Children in Phase II and Phase III sometimes reach, track and move around well but struggle with visual recognition. This lack of visual recognition is the major roadblock to learning. The lower field is often still a problem well into Phase III. Facial recognition is often strongly effected well into Phase III. Children should certainly see an ophthalmologist to rule out any ocular issue but a trained TVI who understands CVI and how to use the CVI Range must do a functional vision assessment using the CVI Range before dismissing CVI. It is the functional visual assessment to identify visual skills in need of support so learning is optimal.

Phase III: Continuing Visual Needs

Looking at the Christine Roman-Lantzy CVI Range (Roman-Lantzy 2007), Phase III is measured as 7-10 on the Range. What visual concerns are still effecting learning? Only careful assessment using the CVI Range (Roman-Lantzy) and the CVI Extension Chart (Roman-Lantzy) can identify these needs.

  • Latency for understanding: students may still need extra visual exploration time to understand what is seen especially the flat 2D literacy materials and symbols and at distance.
  • Students benefit from the support of salient language and labeling that capitalizes on auditory skills to support visual recognition.
  • Lower visual fields might still be effected in Phase III and should be assessed to ensure safe movement through the environment.
  • Visual novelty still effects visual recognition. The student benefits from having newer learning based on the familiar materials. Presenting new materials to teach new learning presents an extra challenge that might impede learning.
  • Complexity of all kinds effects children in Phase III: complexity of array, sensory complexity, facial complexity and complexity of backgrounds, still might limit access to learning and social information.
  • Distance learning requires support because these students are often “close lookers” and lack typical visual curiosity at distance.
  • Although lightgazing may have disappeared as a visual behavior, children benefit from backlighting for 2D understanding and other learning.

From Frontiers in Systems Neuroscience

My head is once again spinning after the March 7th Perkins School for the Blind CVI conference.  Fantastic new research about CVI is being conducted by Dr. Roman-Lantzy and Dr. Lofti Merabet.  How does it related to my work with children? I need to understand as much as I can about the “why” children present with certain behaviors.

“New publication from the lab showing mapping of brain anatomy and visual activity in response to visual field deficits in CVI”.

http://journal.frontiersin.org/…/10.3…/fnsys.2016.00013/full

JOURNAL.FRONTIERSIN.ORG

 

 

 

No Diagnosis of CVI?

I am not a doctor and would never assume to be qualified to give a diagnosis of CVI for any child in my care. I do observe children’s visual behavior and suspect cortical visual impairment.  I try to steer the families to ophthalmologists that understand CVI and make sure I provide the doctor with detailed observations and assessment results I obtained using the CVI Range (Christine Roman-Lantzy 2007).  I do this in the hopes that the diagnosis of CVI will be made. But I can not wait for a diagnosis. I must conduct this assessment of visual factors that greatly influence child’s ability to learn. It is my job as a teacher to students with visual impairments to provide detailed functional vision assessments. The CVI Range is that detailed functional visual assessment.

In my functional vision report, here is the language that I use:

“Given the assessed ocular health of XXX’s eyes, the positive history of brain involvement, complex visual developmental history and reduced functional vision for learning and accessing the environment, XXX was educationally assessed using Christine Roman-Lantzy’s CVI Range (Christine Roman-Lantzy 2007).  Functional vision observations focused on the these recognized characteristics of brain based visual impairment: color preference, reaction to environmental movement, attention to light, reduced visual reflexes to touch and threat, reduced distance attention, increased latency for looking or understanding what is seen, difficulties with sensory complexity, reduced visual motor skills, non-purposeful gaze, difficulties with visual novelty, and visual field preference. (Cortical Visual Impairment: An Approach to Assessment and Intervention by Christine Roman-Lantzy 2007) This is not meant to serve as a diagnosis, only as educational observations that will lead to increased access to visual learning and to the creation of strategies and environmental supports to build vision use”.