Beyond the CVI Meltdown

There is great attention to the topic of CVI Meltdowns first introduced on CVI Scotland. Check out this wonderful link on the topic https://cviscotland.org/documents.php?did=1&sid=55

The CVI Meltdown is the reaction that some children with CVI have to the overwhelming visual or auditory situation and/or to the unfamiliar.

The CVI Meltdown needs to be seen not as a behavior but as an effort to try to communicate their anguish to adults. The behavior communicates “This is too much”, “I can’t do this anymore” or “I have had enough”. They are communicating their fear of not understanding where they are, not understanding who is with them and not understanding what is expected of them. This complex visual/auditory world is just plain beyond their capabilities and they want us to know.

Some children have learned that meltdown behaviors are not tolerated or that adults don’t react well to them. These clever children use other ways to escape.

Here are some examples:

Avoiders:

• Kevin and Henry close their eyes and appear to be sleeping. That solves the problem of visual complexity for them quite well. Adults think they are tired and let them rest.
• Susan focuses on her drawing or on her iPad and needs reminders to “pay attention”. Focusing on the familiar object and activity in her hands is accessible since the classroom learning is not. Adults want her to “pay attention”.
• Owen wants to go to the bathroom all the time. He is seeking that quieter, non-complex place to get away from overwhelming visual and auditory situations. He has learned that few adults will deny a child’s request for the bathroom. Adults take him to the doctor to see what is wrong with his urinary system. That checked, they see this as a behavior.
• Bella asks for a snack often. Snack is a familiar activity with more recognized materials. She has learned that few adults will deny her snack. If she keeps asking, the verbal engagement often gives her descriptions of what is going on around her.
• Jenny keeps her head down all the time. She has found this to be a way to avoid the complexity of the room. Adults are always telling her to “look up” but she always goes back to this head position in loud, busy and place with lots of movement.
• Barry wants to stand near corners or in the back of the room when things get overwhelming. He finds that he can avoid peripheral movement in these places and it is often quieter there. Adults think he should “join the group” more.
• Julie asks to go to the nurse multiple times a day. The nurse’s office is so quiet and calm. Adults first take her to the doctor and then see this as a behavior.

Distractors:

• Billy becomes the class clown. When someone enters the room, he can’t recognize their face. He greets new arrivals with “Here comes trouble” at which point, the person speaks to tell him to stop with the silly comments. Billy can’t stop because this is the only strategy that works for his lack of facial recognition. Adults see this as a behavior.
• Chad is a charmer. He wants to sing you a song or tell you a joke. He changes the interaction to an auditory event when the visual is too much or he is fatigued. Adults love a good joke and a good song.
• Perry talks too much. He asks lots of questions and is engaging adults in verbal interactions. He developed this nice strategy to get auditory information that he can’t get visually. Adults see this as a behavior.
• Gary’s mom describes him as “dramatic” in new situations. That drama is verbal and by engaging verbally, he can figure out what is going on. Adults deal with the drama that they see as a behavior.

What if people understood CVI? I believe if teams understood CVI, they would understand these behaviors as communication. They would know why these children were distracting and avoiding. I would love for staff and parents to listen with “CVI ears” to what their child is so clearly communicating.

 

Child with Visual Recognition Difficulties

My friend is a parent of a child with CVI with visual recognition problems. She constantly describes the impact of CVI on her son that she witnesses every single day. These children with visual recognition problems due to CVI have really, really good central vision use that is consistently used. Because they are looking, people think they have visual access just like we do.

This is her story about a family trip to Montreal. Of course, Omer really doesn’t care for these adventures into noisy, busy and new environments where objects and people are not known and therefore not understood. CVI is an issue of visual recognition after all. He wants to stay in the hotel room that is quiet with few people moving around. He understands and can visually predict the bed, bureau, TV and chairs. He knows the people in the room are his family so that reduces the stress. Because the family understands this difficulty, they picked a quiet restaurant for lunch.

On the table at the quiet restaurant, Omer he saw a glass of room temperature water with bubbles.

 

Omer never saw the bubbles in a glass of water before. A few weeks prior, he had seen and experimented with putting salt into water and drawing on that experience, thought the bubbles were salt. Pretty smart but wrong…

For kids with CVI and visual recognition problems, it takes so long for them to visually process newly seen events and materials. Omer was working so hard to close the gap of information that he missing. He is desperately trying to link previous information to this novel visual target.

Omer never saw the bubbles in a glass of water before. It was his first time seeing it and he was fascinated! He asked his mother to take a picture of it so he could zoom in for a good look and verbal explanation.

I am so proud of Omer’s advocacy! What I do worry about is what is number of times in his day that he encounters items, people and events he doesn’t understand and the we, with perfect vision, forget to make accessible?

What Do iPads Do to Support Students

As discussed many, many times, the strategies for CVI must match the assessment results. We never can just randomly apply a strategy because it will not fit the functional visual needs of the child. If it does not fit the functional visual needs, it will not provide visual access and will not foster improvement of cognitive and visual skills.

With that reminder, I was asked about ideas for iPad apps for children who struggle with visual recognition. Just providing a student with an iPad does not guarantee access. We need to assess the child, think about their visual needs and carefully use the iPad as a tool to provide that access.

What can be some general needs for students who struggle with visual recognition?

Impact of Color: The student might benefit from color highlighting to draw visual attention to specific areas on 3D and 2D materials. That color supports visual attention to the specific place.

Light: Backlighting can helps foster access to materials especially in 2D (pictures and text). Some children do not benefit from backlighting and this should be part of the assessment.

Visual Processing Time: There is still a need for increased time for full visual exploration and full visual understanding.

Visual Field: Lower visual fields might be affected in some children. Other children struggle with visual attention in all fields or “hyper attention” if the scene is too complex. (attends to just one part not taking in the whole scene).

Visual Recognition: Presenting new materials in new kinds of presentations might require the verbal narration of visual attributes.

Clutter: Clutter can affects visual understanding of objects, increased display clutter, of faces, and of the sensory environment.

Distance: Near information is more accessible. Distance curiosity is not typical so distance information is missed.

How do we want the iPad to support the student? 

Impact of Color:

• Tools for color highlighting help support salient feature discussion in pictures and text.

Light:

• Backlighting helps with understanding and easy of access to prevent fatigue.
• Moving to 2D: taking pictures of their items in the environment and then providing the 2D on the backlighted iPad.

Visual Processing Time:

• Provides ability to capture images and videos for longer visual access time.
• Capturing images can be reviewed as long as needed.

Visual Field:

• iPad placement is flexible matched to child’s best visual field.

Visual Recognition:

• Expanded understanding: Example: Here is one kind of mouse in the book but these are all the other kinds of mice.

Visual Clutter and Access:

• Enlargement: for things at distance, for small items in complexity and for literacy
• Overall ability to use settings and apps to reduce complexity of images.
• Studying facial expression in photographs and videos: salient language of faces matched to voice (auditory). There can be instruction about facial expressions that match the auditory information.
• Visual attributes of items in photographs and as part of texts.
• Increasing spacing of words and sentences to reduce clutter.
• Masking: clutter reduction with tools in Photos.

Distance:

• Videos on the iPad: to bring information about events and concepts that occur at distance: Example: We are reading about giraffes. I think about providing a child with access to where that animal might live and how they move.
• Access to distance classroom events: Examples: learning song hand movements for circle time.
• Community access: taking photographs of signs and environmental materials that can be explored on the backlighted, near placed iPad.

Overlooking Children

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.

Youtube Lecture: Recovered Sight: Michael May

Understanding Blindness and the Brain (Brian Wandell, Stanford University)

I think you might find this one fascinating! Michael May lost vision as a child and regained it in his 40s. As he regains sight, there are so many CVI characteristics he experiences!

https://www.youtube.com/watch?v=VVgfC_FV2hI

Respectful Interaction Given Reduced Facial Regard and Facial Recognition

Children deserve to know who is in their environment, who is being addressed, how a person will be interacting with them and what to expect.

Here are some ideas for respectful interactions with children with CVI given that they often lack facial regard and facial recognition.  With consistent use of these methodologies, trust will build and learning will be enhanced.

• Alert John to incoming message by stating his name before asking a question or making a statement.

• Introduce yourself by name and salient feature when approaching.

• Tell John what you will be doing together and what material he might see.

• Tell John what part of his body will be touched and give a touch cue before moving that body part. To learn more about touch cues see Project SALUTE: http://projectsalute.net/Learned/Learnedhtml/TouchCue.html