While you are home…part 2
We are now well into a month of pandemic safe distancing. We are mostly home except for those heroes who are working at hospitals, grocery stores, restaurant take-outs, and drug stores. When we do venture out, we cover our faces and wear gloves like bank robbers. We have learned to watch the behavior of others as though each potential exposure could transform us into zombies (just watch World War Z…seriously). And, all the while, we are charged with working from home and simultaneously, teaching our children. For some of you, this is a dream come true. One parent recently told me that this period of time is the first she has has “full custody” of her child since she was born. She said that since the first days there have been doctors, nurses, early intervention specialists, therapists, special educators, and teaching assistants who have coached her about the best interests of her child. Now, it is her chance. All decisions are hers. Finally.
Other families are desperately missing the embrace of the specialists and the daily routine. They miss kissing their child goodbye for the day and again as they return from a full day of educational and therapeutic activities. The routines for the family are off-orbit and it feels unsettling.
So, regardless of your experience, please know that I am keeping you all in my heart and in my thoughts. Here are a few additional ideas to try at home.
These activities can be adjusted for individuals in high Phase I-Phase III
Gather items of a specific color on a “house-tour” or “yard-walk”. Place them in a box and then sort through them based on salient visual features. For example, “Let’s find all the red things that have round parts (red apple, red ball, red puzzle shape ), or, “Let’s find all the blue things that have a long, straight part (blue spoon, blue toothbrush, blue leggo).
Make a home phone-video of a routine, “starring” your child. Show it to the child before and/or after the routine. “Let’s watch how you are using your spoon. Here’s what you yesterday when you ate oatmeal. I wonder if you will try it this way again today? I am so impressed with the way you get oatmeal on the spoon and bring it all the way to your mouth”.
Help your child learn to think about time in a fun way. Use objects or images that are associated with routines of the day. Some will be “morning things” some, “afternoon things” and if appropriate, some, “nighttime things”. Ideally, use a different color container for each of the 3 parts of the day. Offer the child an item, and ask them to place it into the morning, afternoon, or nighttime box. If Phase early Phase II, use objects. Images can be used for later Phase II (above a CVIR score of 5) or Phase III. Salient feature language can be reinforced in this activity. “I have something here that is shaped like 2 legs with feet shapes attached. When do we put pajama bottoms on?” Keep in mind that some items like spoon, cup, toothbrush, may be placed in more than one box.
Some children may be watching YouTube or other media. Help build number concepts by keeping a tally of how many times a particular video is watched by placing a poker chip or other tangible through a color-highlighted slot. Or, place a clothespin on the edge of a box for each time watched. Then, at the end of the day or next morning, count the tangibles one-by-one and talk about the number quantity, as “many”, as “few” or as more/less than the previous video count. After a few days, and if the video changes, you can discuss which one is the favorite based on the greatest number of views.
Play “I Spy” by placing 3-5 familiar items in unusual places in the house or yard. Provide hints but describing salient visual features. “I spy something that has triangle ears and whiskers. It also has black & orange stripes. Can you find it?” This game can also be adjusted for a child trying to find all the objects of a particular group (find all the balls, find all the blocks, find all the letter b’s…) by using the “warmer-colder” technique. As the child approaches the general direction say, “warmer”. If they move further away, “colder”. You can also incorporate O&M directional terms like right/left, in front/behind, etc as the child moves or is moved through the space.
As I was writing this, I couldn’t resist thoughts for “while you are home” strictly for adults. These included but are not limited to:
….binge-watch “Say Yes to the Dress”, order 5-pound bags of M&Ms on Amazon, start cleaning out a closet but then get fixated on the diary you wrote in high school, conduct Google searches on all the people in your high school diary, listen to a trashy audiobook using headphones but make facial expressions as though you are learning quantum physics, have a second glass of wine…
But of course, that would be inappropriate so I won’t. I’m fine…fine.
I hope everyone is staying safe and well. To those who have been personally touched by the COVID-19 pandemic, I send my deepest concerns and sincere wishes for recovery.
Appointments at Pediatric VIEW are slowly resuming and there is a cautious sense of optimism about returning to some sense of normalcy. Thank you for your patience and for the opportunity to meet with many of you via Zoom.
I am writing this blog post during a time in which we are all self quarantined. It’s a strange and unsettling time. If you are spending more time indoors than you expected, and you are a family member of a child with CVI, you may be toward the bottom of your “fun things to do” list. My own children had a phrase they used on long rainy days indoors. “Mom, what can we do or eat?”. To that end, I am offering a few ideas of things you may be able to do with your children.
Put a few drops of food coloring in a container of hand sanitizer gel. Place it on a backlit surface and move it gently back and forth. When your child turns in the direction of the color gel, apply on the child’s hands if appropriate
Create a simple video of your child’s favorite ball moving in a trough, tabletop, or between 2 hands. Play the video (without sound) and then offer the ball once your child localizes on the video.
Dismantle a color pom-pom or use other shiny material stuffed into an empty plastic water bottle. Attach a small light or slip the light inside the bottle-if near Phase II, these shiny, lighted bottles can be lined up for a simple bowling, or knock-down-type game.
Create a matching game using an object and a photo of the same object. If higher in Phase II, match an illustration of an object to a photographic “match” (a drawing of a cup with a photo of a different cup)
Create a family video of a routine such as mealtime, going to the mailbox, washing dishes, etc and keep a video diary of “a day in the life”, or “favorite parts of my day”. Your child will be the featured star of the video and will likely enjoy watching themself in the video.
Make simple puzzles (more complex if Phase III) made from images cut into 2-3 pieces and take iPad photos of the pieces. As you are building the physical puzzle, find the “next piece” by choosing from the backlit images of individual pieces.
Create a matching game using small photo images of environmental features at home (couch, ty, chair, table, dresser, doorknob…). Show the prompt image to your child and ask them to place the part to the whole. For example, “This is a picture of part of something in the living room (photo of a corner of the couch). Can you show me where the rest of this is ( physical couch)?”
Create a salient feature “go fish” game. Create cards by cutting out simple magazine images creating sets of the same subject (ducks, balls, shoes, hats, cats…). The players can ask for matches by using salient feature language (give me your cards that have a picture of something with pointed ears & whiskers”). The winner can be the one who first gets a certain number of matches.
Make a map of a familiar area-backyard, basement, or living room. Cut out shapes (or, used photo images of the actual targets) that represent furnishings, environmental features (deck, tree swing, windows) and place the objects on the felt board or other map-making surfaces. SImple animal of character figures can be used to create a sequence of activity (“Clifford moves from the bed to the window and then puts his bone on the dresser”). The child can replicate with their own body in real space or play by moving the character on the map surface.
Create a visual journal that has an image of some element of the day and match it to the day of the week. The names of the days can be color-bubbled or, the child can add the weekday name to the bubble outline. At the end of the week, you can review the “week at a glance” which will help support the development of concepts such as temporal relations, sequence and salient features of daily occurrences. (Phase II or III)
I hope some of these ideas will be appropriate for the child in your life who has CVI. I’ll add more ideas in future posts!
Stay safe and be well. You and your families are all on my mind and in my heart.
There was a time when I could not find one other person to talk to about CVI. But, thankfully, those days have passed and now there is a great deal of information from a variety of sources and points of view. There are plenty of others who teach my work and who support children with CVI using The CVI Range approach. That’s all good. But, I continue to have the desire to talk directly to others who share my passion for children with CVI so, I’m attempting to do so via YouTube.
The topics I discuss will be varied and presented in no particular order. I will keep the videos short and will try my best to keep my personal opinions to a minimum. That stated I doubt that anyone will wonder where I stand regardless of the subject matter. Wish me luck!
A couple of years ago I had a major wake-up call. I listened to a parent conduct a session at a CVI conference. During her talk, she mentioned the importance of The CVI Range scores and the expectation that they will continue to improve over time. And then this mom, who I have always viewed as a pillar of fortitude, stated that at one of her daughter’s Pediatric VIEW appointments, I reported that her daughter’s CVI Range score had remained the same as when I previously evaluated her. I then heard this CVI mom tell the attentive group of parents and providers that because of the unchanged score she cried all the way home, several states away. At that moment, I sharply realized the investment parents have in the results of The CVI Range assessments and the potential for either elation in improvements or devastation when the results do not reveal a positive change.
I think I have not done a very good job of explaining the potential meanings of CVI Range scores that seem “stuck”. I have not done a very good job of describing that it is not a failure or a sign that a child has reached their potential. There are many, many factors that may contribute to a CVI Range score that does not increase over two or more evaluations. Some of the factors have no solutions-they are a reflection of conditions that are internal to the child. Others clearly can be resolved and are outside the student. Both types of factors may include:
- a change in medication or overall health status (such as an increase in seizures or a new seizure diagnosis)
- an individual being in high Phase II or Phase III in which skills and functions improve but the number value (7-10) may not
- normal physiologic changes such a puberty
- changes in school personnel or placement that impact a child’s sense of well being and participation
I also need to describe some other reasons The CVI Range score may not change. These are considerations should result in a call to action and are within the control of educational and therapeutic team members. They are factors outside the child/student and are more a reflection of the environment, the knowledge & skills of the providers, and a level of dedication to a CVI Range approach. These reasons may include:
- CVI adaptations are associated with “vision time” rather than an approach that spans the day
- CVI approaches are vague and random rather than being derived precisely from a CVI Range score
- an environment that rarely provides the sensory support needed for the student to use vision rather than hearing or tactile exploration
- the results of a learning media assessment that indicates the use of non-visual learning for literacy
- a CVI Range approach in place at home that is not aligned with the approaches used in school
- the vision providers use an approach that is rooted in the principles of ocular visual impairment
- CVI Range evaluators who may not be testing reliably
One of the key purposes of The CVI Range is to be fully aware of the status of the scores over time and to intervene when there is a plateau. CVI Range scores that do not change should never be taken casually and can provide an opportunity for family and school members to examine the student’s program and reassert their efforts. And for all of us who provide therapy services, evaluation, or education, we must never underestimate the impact of progress on the student but also on their parents who wear their children’s heart on their own heart each moment of the day.