I have the pleasure of working at Perkins School for the Blind as the CVI Program Manager. My supervisor, Ed Bosso, has one central question for me every time we meet:
“How does this benefit kids and families?”
I try to take that question into consideration for everything I do.
- How does this statement benefit kids and families?
- How does this interaction benefit kids and families?
- How does this idea benefit kids and families?
- How does this CVI training benefit kids and families?
- How does this assessment benefit kids and families?
- How does this collaboration benefit kids and families?
There is certainly increasing understanding of CVI since I first learned about it in 2002. Now our task is to stay focused and to use that building energy and building understanding creatively, scientifically and collaboratively to move this field forward in all ways.
To support the medical field, the educational field and research field in understanding CVI, that central question, “How does this benefit kids and families?”, should be the first question we ask ourselves. Absolutely nothing else matters…
Please check out the latest parent blog: CVI Momifesto at
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 that consider the known brain based visual issues of CVI. 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!
Color is so important for many children with CVI. 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:
- 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!)
- the child codes by color against complexity and at distance. He picks the wrong yellow toy from a toy box when searching for his favorite yellow truck. He moves to to the wrong purple box at 10 feet thinking it is his backpack.
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 but all colors are used for recognition.
- 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.
Remember “preference” does not mean this color is the “only” accessible color.
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 very impacted by CVI are easily identified because they are very visually impaired and appear blind. It is easy to understand their visual impairment even for untrained people. Children who have better visual attention but who struggle with visual recognition are more difficult for people to understand. The untrained person sees this visual attention and mistakenly believes the child can use their vision effectively to learn. It is essential to have an complete CVI assessment around this visual recognition before deciding whether a child has CVI or not. It is only through rigorous assessment around the well known visual behaviors of CVI that we can determine a child’s functional vision. These children with better visual attention can often track and move around well but struggle with visual recognition of landmarks in the environment . This lack of visual recognition is the major roadblock to learning. The lower field is often still a problem depending on the area of brain damage. Facial recognition is often strongly effected. Children should certainly see an ophthalmologist to rule out any ocular issue but a trained TVI who understands CVI and how to use the many tools for assessment must do this functional vision assessment. It is this full and complete functional visual assessment that identifies visual skills so learning access is optimal.
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”.
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/cerebral 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 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.
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 (name the tools used). Functional vision observations focused on the these recognized characteristics of brain based visual impairment: 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”.