While you are home…
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.
It’s almost 2019. What a year this has been. There have been so many things to reflect upon both personal and professional. I am going to indulge myself a bit.
The year started with the usual suspects. Promises to get fit (ish), to find more quiet time to knit, or walk in the woods, or watch the birds (yes, I am a nerd). But the little spiral book that is my calendar preempted many of those plans. I’m not sorry-I love my work…every bit of it. But, I do wonder about my inability to quiet my thoughts and to follow those occasional instincts for calm. Nevermind that, it’s been an interesting and challenging year.
There have been accomplishments. The revision of Cortical Visual Impairment: An Approach to Identification, Assessment & Intervention was released early in 2018. “Book 2” is done and if the stars align and the moon is in orbit with Jupiter, I hear it may even be released. I am so fortunate to have co-authors in this text and each of them is impressive. What an honor.
I still have Pediatric VIEW at West Penn Hospital even though the hospital loses money every day that I am there. The work I get to do at Pediatric VIEW is the hardest and most rewarding.
I have travelled to specialized schools, hospitals, family homes, public schools and therapeutic settings to teach adults and to evaluate children. That is an incredible gift and to this day I find it intriguing that others are interested in my points of view on CVI.
The CVI courses provided by Perkins eLearning have been wildly successful and thus, provide training to thousands of interested participants from all over the world. I continue to watch the list of Perkins-Roman CVI Endorsed professionals grow and it fills me with hope to realize that more students are being offered an education by those who are motivated to go the extra mile.
I had an opportunity to spend a rich afternoon with families of children who have a child with CVI. It was incredible to see the interactions of the siblings and parents in a non-structured event. I smiled so hard all day that I may have met my happiness quotient for the decade.
But, of course, 2018 has also had some worrisome events. In September my best friend/sister of 45 years died suddenly and unexpectedly. She was my Old Same and closest relationship (let’s face it there are things you share with your best girlfriend that you don’t necessarily even share with a spouse). I met her in the first months of my first year as a teacher of the visually impaired. It was at her urging that I began working with children who did not qualify for my caseload. She hated it when after 17 years teaching in the public schools, I resigned to work at The University of Pittsburgh but she knew that the interest she sparked in me about CVI had to be pursued. So, the loss of my friend is huge and constant. It has left a hole in my heart that will not be repaired but one that I will be forced to live with. I think it also makes me acutely aware of the urgency of each day and never missing the opportunity to do what is most authentically right.
In 2018 I felt another loss as well, this one in the field in which I have dedicated my life’s work. The CVI Resolution 2018-001 presented at AER International dashed the shred of optimism I had about the potential for leadership in the professional organization I belonged to for most of my adult life. I struggle to reconcile how this could be the same organization that presented me with The Bledsoe Award for “outstanding literature in the field of blindness and visual impairment”. The Resolution created confusion and division among the very professionals AER is charged with supporting. And parents of children with CVI seemed even more frustrated. Their voices were strong but often met with defensiveness or excuses. Shame on us.
Not unrelated to the frustrations described above, parents of children with CVI truly found their collective voice in 2018. On-line groups, tele-support groups, and face-to-face interactions have resulted in families crossing their arms, digging their heels in & drawing a line in the sand. They are demanding equal access to their child’s education and no longer tolerate CVI being a second-class citizen to the opportunities and services provided to children (who also deserve) with ocular conditions.
I am so impressed with their advocacy and the resource they are to each other. These parents are making history. They have no choice. After all, what would you do if your child had CVI and was 1) dismissed from a caseload because “vision was the least of her problems”, or, 2) seen by a vision professional 4 times a year as a consult, or, 3) scheduled for vision support based on the hours left over after the braille students were accounted for, or, 4) provided vision services by a person who thinks the only functional vision assessment is the one designed for individuals with ocular visual impairment, or, 5) believed to need little support once they were in Phase III, or, 6) inappropriately diagnosed with a behavior problem or other condition when in fact the interfering difficulties were all intrinsic to CVI, or, 7)…..1000)? Really, ask yourself, what would you do? So, I applaud these busiest of all parents for the momentum they are creating and from which all children with CVI will benefit.
So, I sit at my laptop on a sunny winter day wondering what will come in 2019. I am hopeful but not foolish. I will continue to conjure my inner gut and make the professional choices that benefit children. Here’s what I hope:
- Parents of children with CVI will continue to strengthen their voices and that their children’s needs will be met from diagnosis through adulthood. I recognize that this “wish” may need more than the 12 months assigned to 2019.
- CVI strategies will be an occasional approach used only to support a solid, effective METHODOLOGY for teaching students who have CVI. It is my belief that a deep knowledge of CVI, child development, and learning theory are mandatory prerequisites to effective approaches for students with CVI.
- The number of Perkins-Roman CVI Range Endorsed individuals will continue to grow thus demonstrating the dedication of professionals who serve students with CVI.
- That the CVI Infant Screening protocol will be implemented in numerous settings. We have had tremendous success at West Penn Hospital where every at-risk child in our NICU is screened and followed for potential CVI. No child with CVI slips through the cracks.
- That evidence of the reliability and validity of The CVI Range will be replicated
- That the study currently being conducted by The Bridge School will support the efficacy of interventions based on The CVI Range
- That those who seem to have opposing outlooks regarding CVI will have more opportunity to collaborate and develop mutual respect based on a genuine understanding of each other’s work
- That university programs will teach CVI content in a rigorous and meaningful way to their pre-service students.
- That the Perkins eLearning Phase III course is completed and launched.
There are more, actually, many more wishes on my CVI list but I commit to the ones described above for now. The rest of them can be discussed any night between 2-5 AM when I am sorting them out.
Happy New Year and best wishes to all.
In July 2018, AER passed Resolution 2018-001. This Resolution included content that potentially limited the use of The CVI Range as an assessment of functional vision in students who have CVI. The following is my response to the Resolution. My statement provides an explanation of my point of view regarding AER’s Resolution 2018-001. The Resolution was removed from AER’s website in September, 2018.
August 24, 2018
To whom it May Concern,
I am enclosing my comments to your Resolution (AER-2018-00). Many of the statements in your document are misleading, incomplete, or inaccurate. I find the purpose of your Resolution very much in question as I have been in the field of visual impairment for 45 years and I have never seen a position such as the one proposed in Resolution 2018-001. Your document specifically targets my work in a number of inaccurate ways. I have edited your Resolution line by line, but I will attempt to describe the largest issues in this letter.
You described The CVI Range as “but one assessment” in your statements that call for TVIs to consider use of multiple other tools to assess the educational needs of young children and students with CVI. The list of additional assessments do not approximate the comprehensive nature of the information derived from the results of The CVI Range. Many of the other instruments cited in the “rationale” (added after the Resolution was passed), are primarily used to test a particular aspect of visual dysfunction rather than a comprehensive profile of functional vision. More troubling, the alternative, additional tools listed in the “rationale” are almost exclusively for individuals with visual perceptual problems or cerebral visual impairment. As Lueck & Dutton describe (2015) & Jan (2011), cortical and cerebral visual impairments are not interchangeable terms. It is inappropriate to describe the use of a test of functional vision for cortical visual impairment with those designed for individuals with cerebral visual impairment. But you do. Perhaps further explanation is necessary.
The CVI Range scores are obtained by information that is systematically gathered through observation of the student in living and learning settings, interview of a parent or caregiver, and a set of specific direct-assessment techniques. The scores are used to describe the degree of effect of the CVI characteristics. The results of The CVI Range can be applied directly to IFSP or IEP content and accommodations necessary to provide visual access throughout the natural routines of the student’s day. No other test for individuals with cortical visual impairment, or cerebral visual impairment for that matter, includes this comprehensive approach.
The CVI Range has supported the educational and functional vision needs of children since at least 2007. Cortical Visual Impairment: An Approach to Assessment & Intervention, was awarded The Bledsoe Award by AER for written material that was recognized as valuable to the field of visual impairment. Is AER now reversing their stand about the importance of the very work they acknowledged as an outstanding contribution to the profession? It is also important to recognize that parents of children with CVI advocate for the use of The CVI Range for one reason. They have found the use of The CVI Range and associated educational approaches effective. If you want to represent the best interests of families and the educators who support children with CVI, you will take the responsibility to revise the Resolution with appropriate corrections.
I cannot fully identify the motivations of the authors of Resolution 2018-001. The underlying message that parents cannot and should not require CVI Range evaluations conveys a meaning that is both confusing and a potential attempt to divert families away from an approach that has supported their children’s access to education successfully. This is especially odd in this era of demands for data driven measures. The only test of functional vision for students with CVI that has been shown to have reliability & validity (Newcomb, 2010), is The CVI Range (the content of the 2018 edition of The CVI Range has not been adapted-only the cover sheet and explanations in the scoring guides have been expanded to provide in-depth explanations of test items).
The Perkins Roman CVI Range Endorsement was created to meet a need in the field ( CVI Range Endorsement letters of support are available upon request). Due to the widespread use of The CVI Range, it became necessary to provide a method for CVI providers to demonstrate their ability to conduct this test with fidelity. The ultimate hope is that university programs will take responsibility to teach the methods associated with The CVI Range at which time, the need for the Perkins Roman CVI Range Endorsement may not be necessary. Until that time, parents and professionals are requesting the assistance of an individual who has demonstrated the ability to score The CVI Range with accuracy. And it is also true that those who obtain the Perkins Roman CVI Range Endorsement are contributing to a body of data illustrating the inter-rater reliability of The CVI Range.
It is clear that Resolution 2018-001 posits that The CVI Range is “but one assessment…CVI”, when in fact it currently is the only comprehensive one which is evidence based and successfully undergone peer review. The misleading statements in the Resolution may potentially have an impact on my professional reputation and on my ability to earn a living in my profession. I require AER, to make corrections in the document in accordance with the point by point notations I added to correct the misinformation in the current document. It is important that you send this notice as well as the revised Resolution to your membership. The corrections must be available in a public forum. Upon your request, I would be happy to share my line by line edits with you. Please know that I offer my assistance in crafting a new Resolution or, in any way that I can contribute on behalf of children, students, and families impacted by CVI.
Christine Roman Lantzy, Ph. D.