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.

 

Take a Seat!

Watch your children with CVI move to get into a chair. So often I see this done tactilely. They turn and backup slowly until they feel the chair seat against the back of their legs. I believe this is due to the difficulties judging distance, the visual complexity of this task and visual motor difficulties.

I have had great luck working with the PT and OT to help children understand where the chair is in space and how to move their body into the seated position.

Here is one example. Just by placing red tape on one arm of the modified toilet we could teach the child to find the highlighted armrest of the chair, cross midline, hold the red highlighted area to stabilize their body and to turn to sit. As they improved their skills, we were able to reduce the size of the color highlighting and finally remove it. This provided safe and more independent toileting.

 

 

Parent Interview, Observation and Direct Assessment: What is Learned?

 

• The parent interview gives up the across the lifetime visual abilities (improvement history), across environments information (home vs grandmother’s house) and across the day abilities (early in the morning and after a long school day). The parents also identify other visual difficulties for assessment that I might not have considered. Each child has their own unique visual difficulties and the parents help me know what to assess.
• The observations in multiple familiar and unfamiliar environments gives us the child’s functioning in a less adapted learning environment.
• The direct assessment, conducted in a very adapted environment (low complexity, sound, movement etc.) that gives us a look at the visual skills with all the supports in place to support that student’s vision. That direct assessment environment tells us what the child is capable of if the environment is adapted and what adaptations would help.
• We bring those adaptations into the classroom and home for optimal visual functioning and across the day access.

Have You Really Controlled the Complexity and Light?

Complexity and access to distracting light and movement can completely overwhelm the student with CVI in the classroom. I have seen teachers work very hard to reduce the complexity of their classrooms. It can be a challenge but well worth every effort for our students with visual impairments due to CVI. Controlling complexity and light effectively creates accessibility to learning.

Take a look at this classroom: (Pinterest)

 

This teacher has covered the shelves that are probably filled with toys and books. The shades are pulled down to control distracting light sources. The floor cover is a nice non-complex background for looking at materials placed on the rug. A nice start!

BUT: look at the shelves in on the left side of the room. The black cover controls the complexity on the shelves but the complexity remains with the many colorful and complex materials stored on top. If those toys were removed, that left side of the room would be a much less complex background against which to learn.  That is, of course, if that is the way the student in facing in the room!

If the student is facing the right side of the room or learning in the middle of the room, that would be completely overwhelming and complex. If the student is facing this way and this is the background, the student would really struggle against this complexity of array. This side of the room is completely inaccessible for learning for the student with CVI.

Here is a challenge for everyone as you return to school from the holiday break. Pick a student in your class who has CVI. Think about every position you place that student throughout the day. Actually sit there. Is the background where the student is facing free of complexity? If not, rethink your adaptations so the whole room is adapted. Would there be a better place to face? Would learning against a wall rather than in the middle of the classroom be best? Accessible learning is from the student’s point of view not from ours.

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 23^rd to December 10^th, 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 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!

 

Adapting Classrooms for Children with CVI

It can be a real challenge to adapt learning environments for our students with CVI. Of course, one adaptation suggestion is never the answer. The environment must match the child’s assessed functional needs around CVI. Children must have distinctly unique adaptions for their environments and for their learning based on a complete CVI assessment. These distinct needs can only be identified with assessment of the individual child’s CVI.

For a child with an ocular impairment like retinopathy of prematurity (ROP), we would never say “Oh, this child has ROP? Here are the environmental needs and the learning material needs.” We would assess functional vision to identify the unique visual needs of that individual child. Our children with CVI deserve the same respectful and accurate assessment of their functional vision. They deserve accurate environmental supports and adaptations to learning that match that assessment.

In several classrooms where I serve children, the reduction of visual and auditory complexity and controlling access to light are the most challenging environmental adaptations. The solution we have used was to create learning centers in the classroom using cubicles.

 

These cubicles were donated by a business that was renovating their offices. The donation was a free and effective environmental support for many of my students. The cubicle walls are large and sound reducing. They tend to be tall which blocks distracting light. Perfect for so many children. Call your local Chamber of Commence or contact your local Rotary Club. I’m sure businesses would be so happy to help and to see these cubicles recycled and put to good use!

Visual Experience, Experience, Experience

For science nerds like me!

“Neuroscientists Reveal How the Brain Learns to Recognize Objects”

https://www.sciencedaily.com/releases/2010/09/100922121937.htm

This article comes from work being conducted at Massachusetts Institute of Technology (MIT). They are studying how humans process visual information for recognition so they can design artificial visual systems. It seems vision is such a complex process! I think parents and teacher have understood this for years!

This great article that drives home the brain’s need for repeated experience to build visual understanding. The brain must have repeated experiences with objects in different kinds of positions, perspectives, lighting, size and distance. It reminds me to provide my students with real objects in repeated, predictable routines to build familiarity. It reminds me not it only present iPad visual targets that can’t be manipulated. The child builds visual recognition from the presentation of objects in multiple positions to view multiple perspectives. If the child is not able to manipulate material themselves, we must provide that varying visual perspective.

 

 

 

What’s the Complexity? Workshop

This month I attended a full day workshop titled: “What’s the Complexity?” with creator, Matt Tietjen, M.Ed. CTVI. This assessment tool was developed to look at the visual behavior of complexity as it is intertwined with other visual behaviors of CVI.

The “What’s the Complexity?” framework takes a close look at the visual behavior of Complexity,  that is most difficult to control and the visual behavior that seems to effect children’s visual functioning to the greatest degree. It provides a way for parents and educational teams to assess complexity in all forms. It helps parents and teams choose appropriate materials, design appropriate environments matched to appropriate tasks and then to plan across the complete learning day for the student with CVI.

The “What’s the Complexity?” framework also provides us with a well thought out system to assess the student’s interpretation of images. We evaluate the child’s understanding of photographs of their real items (my spoon), colored photographs of other classes of items (the class of spoons), understanding of realistic or abstract cartoon icons of items (spoons in cartoon form), colored icons (Mayer Johnson spoon) and black and white line drawings (black and white drawing of a spoon).

This is an important new tool for us as we serve our children with CVI. It will help support our recommendations for children’s accessible media. Fantastic!

I understand that a graduate class will be offered regularly at Perkins elearning to deepen the understanding for using the “What’s the Complexity?” framework. I will certainly be signing up for this!

 

Morning Meeting Ideas for Children with Limited Visual Attention

The first place to start in developing a morning meeting routine, of course, is to assess each child to determine their visual needs. Understanding the child’s functional visual skills allows you to create goals and objectives and to provide across-the-day accommodations and methodologies to meet those needs.

• Materials in morning meeting must have considerations for color. Best colors are often bright and saturated. Single colored items are most accessible. Your presentations must consider that the child is only seeing color, not shape to discriminate one thing for another. If you have all red things, they can’t do this discrimination. Because this child is very visually impaired, compensatory skills should also be considered.
• Items presented must be 3D, real, familiar and functional objects NOT PICTURES! 3D objects will provide visual access, tactile input, olfactory input and auditory input and can be seen in all perspectives.
• Pictures are completely inaccessible for this child who is not using central vision effectively. (Central vision is essential for children to understand any 2D materials).
• Materials in morning meeting must meet any assessed need for motion. Shiny items are considered can seem to move due to reflected light. Movement should be gentle and slow not fast and frantic. Frantic motion can overwhelm the child.
• To foster looking at the presented morning meeting materials, light must be controlled, limiting the child’s lightgazing.
• Because light is important to encourage looking, light the materials that are presented or use materials that light up.
• Because fixation is brief, the material must be presented for longer so the child has another opportunity to visually locate.
• Because peripheral fields are stronger than central visual fields, the materials must be presented off center in the best assessed lateral visual field.
• The lower visual fields are often not functional well so eye level is recommended. Upper fields can also be inaccessible.
• Make sure the “action” of morning meeting is within their best assessed visual field.
• The child can only look at items in near space. The exact assessed distance needs to be respected and materials presented within this distance. This is typically within 18”-24” of the child’s eyes.
• Give the child a copy of the material being used with other child in turn. This provides visual access for the child even when materials are being presented to other children at greater distances.
• Faces are very complex. This child will have difficulty looking at faces. Be mindful that the child may be attending but not able to make eye contact or even look towards your face if you are talking. Greet them with your name and tell them what you will be doing with them. Call their name before delivering a message or asking a question. Research shows that adults often do not talk as much or as long to children without eye contact. Adults should be aware of this and monitor their behavior with children.
• Provide quieter environments. This can be difficult in a larger group of people. Consider having smaller morning meetings with a smaller number of children. Teaching assistants can be used when designing these multiple morning meeting sessions.
• Create morning meetings of less children so the movement, visual complexity and auditory complexity is more controllable. There is no rule that morning meeting needs to be all the children in one morning meeting. Have several smaller meetings.
• Provide non-complex backgrounds for all learning materials.
• Where non-complex shirts. You are the the visual background!
• Seat yourself in the same position as the child to see what the child sees. You will be surprised how much visual complexity you will notice and need to control.
• Position this child solidly for best visual skill use.
• Use familiar materials and familiar routines. Use consistent materials to build visual familiarity. Predictable routines in morning meeting will support visual recognition of materials and help children predict the sequences.
• The child will have increased processing time for looking for understanding what is seen. Using the assessment and taking data will help identify how long the child requires for visual attention, which visual field is faster and which visual field has the most sustained visual attention abilities. The material needs to be where the learning is accessible and for as long as the child requires.