Dr. Barbara Lopez Avila is a CVI mom and developmental psychologist. Her beautiful and brilliant son, Logan, is in Phase II on the CVI Range scale.
As a mom to four gorgeous children, one diagnosed with cortical visual impairment (CVI), to say I am overwhelmed is an understatement most days. My children are all unique in their own ways, each with their own set of strengths and challenges, but only one is negotiating this world without a road map. This is because while CVI is the leading cause of pediatric visual impairment in developed countries, the medical as well as the educational communities are still far behind in knowing how to diagnose and treat CVI. This leaves parents of children with CVI in much uncertainty about what to do to best help their children. Similar to other parents, I feel a sense of urgency to uncover best practices and recommended treatments. We see the days, months, and years pass and still no consensus in the medical and education communities on how to diagnose and best serve our kids.
I have decided to take an active role in choosing providers (both educational and medical) that are knowledgeable in CVI (hard to find here in Florida) or want to learn about CVI. I realize that my son needs a TEAM of providers to navigate through these uncharted waters.
I cannot do it by myself.
I have a PhD in developmental psychology, but still felt ill prepared. I began adding to my skill set by educating myself on CVI and sharing what I learn with all of his providers. Logan receives ABA, PT, OT, Speech, and feeding therapy. He is also followed by several specialists including a TVI. I often text and email links to resources. Sit with each provider and take an active role in crafting goals and making sure that CVI is always considered. Adapt materials and strategies to incorporate CVI principles. Advocate for appropriate services and spread awareness.
Are you feeling overwhelmed yet? We parents cannot do this alone. I am lucky that I have been able to find a group of providers that support my child, and a group of parents that not only provide emotional support but are a wealth of information. They are all part of my TEAM because I cannot do it alone.
Logan’s therapists have been receptive to learning about CVI and to my guidance adapting materials based on his CVI range score to be more visually accessible to him.
For example, Logan’s augmented alternative communication (AAC) device is customized and unique to his visual needs. I was able to reprogram the device with the help of his SLP and Prentrom representative who is also an SLP. This process took several months to put into place and is still ongoing. We began by removing all icons from his device and changing the color scheme. During this time we discovered that Logan was not using the icons on his AAC device because he continued to use and learn new buttons at the same rate as before. However, we also discovered that communication partners (e.g., teachers and therapists) were accessing the device at a lower rate without the icons. We settled on removing the icons and adding words so that communication partners would be able to more easily access the device. It is also our hope that as Logan grows and gains literacy, it will also be helpful for him.
Another example of collaboration with providers is our experience with Logan’s ABA therapists. They have not only been receptive to learning about CVI, adapting materials, but have also begun using CVI strategies such as salient features language. I meet with the ABA supervisor regularly to review procedures for the tasks and make sure they are consistent with CVI strategies.
Here’s one example of how we structure a therapy session to ensure visual access.
1. Adapt materials and physical environment to promote visual access.
2. Incorporate pre-teaching of salient features of objects, 2D photographs, or targets into procedures.
3. Incorporate use of comparative thought to procedures where appropriate. In certain situations, use of comparative thought is used in place of a gestural prompt when an object is misidentified. This means that salient features are discussed again with comparative thought instead of just pointing at the right answer (gestural prompt).
4. Address sensory balance. Careful thought was given to ordering of activities. We have reorganized activities so more visually demanding activities are completed early in the session and sandwiched by less visually demanding activities or unstructured activities.
5. Reduce meltdowns in two ways, implementing a visual schedule and recognizing signs of visual fatigue. We began using a visual schedule that provides predictability for Logan. This was trialed over the summer and we found that Logan responded positively. The use of visual schedule was expanded and is now implemented at home and at school. Discussing early signs of visual fatigue and increasing reinforcement during more demanding tasks with providers. I always tell them to keep it positive during session or you will lose him. Each child is unique and for Logan his first signs of visual fatigue are taking his shoes and glasses off. These behaviors are not usually noteworthy or sometimes misinterpreted as something else by providers. Knowing the signs of visual fatigue allow his therapists to adapt his sessions to his needs.
As a result of the collaboration between providers and myself, Logan has made progress in several areas. Logan uses his AAC device to communicate regularly at school and home. He has learned to type his name, identifies numbers and letters, completes puzzles, and actively participates in social activities with typical peers and siblings.