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:
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.
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.
In November 2018 and July 2019, Perkins School for the Blind convened a Cortical/Cerebral (CVI) COLAB and CVI Symposium, to tackle the “wicked” problem of CVI. A COLAB as defined as “a gathering of stakeholders who together share, learn, and create a deep understanding of a complex problem” (Demosophia LLC). International and national stakeholders included parents, vision professionals, vision researchers, ophthalmologists, neuro-ophthalmologist, optometrists, university personnel, agency personnel and CVI advocates came together to discuss the triggering question. “What do you believe are the challenges that impede progress regarding CVI?”.
From these CVI meetings, Perkins developed a more expanded and more inclusive understanding of CVI and became committed to sharing that knowledge with the wider community. Perkins is committed to sharing what we know today and to keep an eye on the latest research and promising practices for serving learners and families impacted by CVI.
In that effort, Perkins today launched the CVI NOW website and, for parents, the CVI Now Facebook page. Check it out and if you are a parent, join the Facebook page that’s just for families.
Check out this conversation between Dr. Lotfi Merabet and Dr. John Ravenscroft, two leaders in the field of CVI. The CVI field needs research now more than ever as the educational programming and assessment claims continue to rise with limited understanding of how the brain even works.
There is not one size fits all for our students for assessment protocols, environmental needs or learning access needs because each child’s brain is different, each brain injury is different, each brain has different experiences and each brain rewires uniquely. CVI is as complex as the brain and to simplify CVI means children are left out, not fully assessed and not fully served.
Check out Dr. Ravenscroft’s other conversations with other theorists and practitioners. There is a wealth of knowledge!
This just published by the National Institutes of Health. There is growing awareness about CVI in the medical community and in organizations that provide funding sources. This appears on their website.
Listen to the American Council for the Blind’s Podcast: Learning From Home. This addresses the essential partnerships that school based team members must have with home based team members in the education of children with CVI during this pandemic. It stresses the importance of natural routines, consistency, collaboration and extended learning with direct teaching and supplemental activities.
Join us for a week-long program June 22-26, 2020 where you can stream inspiring ideas, conversation and more from our presenters right to your home. This free event is designed for parents of children with visual impairment birth to 7 years old, their families and the professionals who support them.
Watch an inspiring keynote and view pre-recorded sessions anytime during the week on topics such as:
All About Switches- Explore activities using simple “cause & effect” technology – switches – to activate a toy, access an iPad or interact with a computer.
Expanding Your Child’s Potential for Visual Improvement (CVI)- For children with Cortical/Cerebral Visual Impairment, learn how a vision assessment and the right supports can foster vision improvement.
Technology at your Fingertips– Explore the technology available for children with visual impairment and multi-sensory needs while learning your rights for getting your child assessed and equipped with the right tools.
Make sure to register to gain access to an inspiring keynote from parent and TVI Burju Sari and plan on joining us for several ‘live’ Q&A sessions with leading experts from Perkins who can respond to questions you and other parents are asking.
As we are pivoting to a virtual event, this year’s Early Connections Conference will be offered at no cost, and we have refunded the registration fee for anyone who has already paid.
to reserve your spot and receive event updates and live conference links via email. Please feel free to share this information with other families who would benefit from the opportunity to learn and connect. If you’d be interested in making a donation to Perkins, we’d be grateful.
We know that CVI is a problem of visual attention and visual recognition. So many children at all severity levels of CVI rely on color to find things in complex scenes, at distance and to identify objects. Check out this article that explains why color is a support for all of us to identify objects in the world around us.
As we think about engaging and learning while at home, cooking provides a multitude of multisensory learning opportunities. Pick one food that your child loves and create an opportunity to cook that food repeatedly throughout the week. Pick a quieter time and quieter place for this activity for optimal visual abilities. Create a non-complex surface with increased spacing of materials. Block distracting light and movement around the activity. This can be a long or very short activity.
Some simple favorites:
Peanut butter and banana sandwiches
Ice cream sundaes
Pre-packaged Mac and Cheese
Let’s think about what this one activity provides our students with CVI:
Visual Benefits:Remember to engage visual skills at all times. Tell your child what they will see. Show the item to the child without talking. Describe the visual features of the item. Show again without talking. Allow tactile exploration.
That repeated visual opportunity will provide visual prediction that your child needs to develop visual recognition of the foods, the packaging, the utensils and the storage containers that are regularly and consistently seen.
Thinking about the support of color, picking packages, utensils and containers of very different colors will help the child discriminate and recognize each based on color.
That will allow you to describe the visual features: what the food, packaging, utensils and the containers look like.
Repetition provides opportunities to develop visual memories.
The movement of the cooking sequence draws and helps maintain visual attention.
Using these real materials will allow exploration of the different visual perspectives of the visual materials.
Compensatory Skills Benefits:
Activities engage visual, auditory, olfactory, taste and tactile senses; all of which support visual recognition skills.
Creating foods provides opportunities to develop sequencing and following directions.
Provides opportunities to use position words: “on top of”, “add to”, “in/out”.
Provides opportunities to use attribute words for the visual aspects and tactile aspects of the foods.
Provides opportunities to use cooking vocabulary: “mix”, “fold”, “stir”, “beat”, “add”.
Provides opportunities to use concepts: hot/cold
Provides opportunities to use concepts: more/less
Provides opportunities to use concepts of attributes: big/little, long/short, curved/straight
Provides opportunities to use concepts of the appropriate storage of foods (those stored in the cabinets, refrigerator, freezer).
Provides opportunities to understand the properties of liquids and solids
Provides opportunities to use for grouping and categorizing
Provides opportunities to understand parts to whole: sliced banana vs. the whole banana.
Provides opportunities to for food handling: peeling, cracking
Reading Benefits Reading in print, Braille, symbols, pictures
Provides opportunities to for reading in print, Braille, symbols, pictures
Provides opportunities to create lists of things to buy to get ingredients
Provides opportunities for reading and following directions of the recipes
Provides opportunities to for measuring and weighing
Provides opportunities to understand one to one correspondence
Provides opportunities to understand time concepts
Provides opportunities to understand temperatures
Provides opportunities to understand size concepts
Provides opportunities to count
Provides opportunities to cut into foods into factions
Provides opportunities to fill and dump
Provides opportunities to understand portions
Provides opportunities to experience cause and effect
Provides opportunities to use chemistry
Provides opportunities to understand how foods are different in form: milks require pouring while mayonnaise requires scooping
Provides opportunities to understand how heating and freezing impacts foods
Provides opportunities to use force for cutting, separating
Provides opportunities for sharing
Provides opportunities for cooperating
Provides opportunities for opening and closing containers
Provides opportunities for holding heavy and light materials
Provides opportunities to use two hands together
Provides opportunities for stirring different textures with different tools
Provides opportunities to use pouring, scooping, kneading
Provides opportunities to plan
Provides opportunities to make choices.
Provides opportunities to sort needed ingredients and tools
Provides opportunities for cleaning needed tools
Provides opportunities to set up for completing a task
Provides opportunities to use recipes on iPads
Provides opportunities to use blenders, mixers and other kitchen equipment
Provides opportunities to use the oven, the microwave and to use stovetops
Even if your child is not eating foods, participating in tube formula feeding is also an opportunity for many of these same learning experiences.
Each activity can be easily adapted for the various functioning abilities for each child. Some will be independent with supervision and some might require hand under hand support for participation. Touching, looking at, pushing something into a container is all participation. All levels of abilities can be engaged and learning fruitful for all!
Want more? You can use these to follow up after your cooking. Use again and again!
Take pictures and make a Powerpoint book of the ingredients or process
Turn in to this webinar organized by Dr. John Ravenscroft as he interviews Dr. Christine Roman-Lantzy. This is a fantastic conversation about Dr. Roman’s journey learning about CVI since the 1970s. She shares her passion that led to the development of the CVI Range. If you know her, your know her work begins and continues with parent information.