Story
Navigating my son’s CVI and complex communication needs
Barbara Lopez Avila shares all that she's had to figure out along her journey to find the best approach for her son's communications needs
My son, Logan, is a funny, friendly, and energetic soul with a smile that warms your heart. He communicates these key features of his personality without saying a word on most occasions. (He only can say a handful of words). His difficulty with verbal communication is not surprising given that children who have cerebral palsy (CP) often have difficulty with speech production and often use augmented alternative communication (AAC) devices to communicate verbally.
We began with AAC when Logan was two years old. However, we quickly noticed that something was off. He did not seem to understand the pictures in the device but memorized locations. We began with a device that had four cells and several levels. Each level had a card with four pictures. We noticed that he was unaware that the pictures were different across the cards and we did not understand why.
This was before he was diagnosed with cerebral/cortical visual impairment (CVI).
Looking back, I now know the difficulties he was having were related to vision. He did not have sufficient functional vision to process abstract or real pictures and even an array of four was likely too visually complex for him. Despite these challenges, he persevered and learned to communicate with the device through hours of practice.
Determination and relying on memory and prediction have always been Logan’s strengths.
Adapting Logan’s AAC device to meet his needs
At 4 years old, Logan was diagnosed with CVI. After two years of using AAC, we decided he needed access to more language. Given his new CVI diagnosis, we struggled with how to increase his access to more language if he could not visually process pictures. With the assistance of the therapists on his team—Applied Behavior Analysis (ABA) Therapist, Speech-Language Pathologist (SLP), and Occupational Therapist (OT)—we began to trial a variety of options.
We trialed the Picture Exchange Communication System (PECS) (Bondy & Frost, 1994) and ran into the same issue with the pictures—they were not visually accessible. We adapted the PECS by using real pictures and removing the background but nothing we did seemed to improve recognition. He just could not recognize what was in the pictures.
We shifted gears to a system that, while visually complex, relied on motor planning and memorizing the locations of icons. This approach, known as Language Acquisition Through Motor Planning (LAMPTM), requires hours of practice because you are learning locations through repetition, similar to typing. Despite the emphasis on motor planning, most who use LAMP have typical vision. Much like a world that is not designed for our kids, LAMP was not designed to be used by children with CVI. Over the past four years, I have (with the assistance of really wonderful Prentrom representatives) reprogrammed the device to adapt it to Logan’s unique vision needs.
As I learned about CVI and how it impacts Logan’s vision, I adapted different aspects of the device. For example, I removed the icons completely. This was scary! However, I learned he could still use the device (based on memory, context, and prediction) and confirmed that the icons were not facilitating his use of his device. They likely were hindering his use by increasing complexity and clutter, and likely leading to increased visual fatigue.
I knew that removing icons and words from the device was not a good option for his communication partners because they had typical vision and relied on icons and words to use the device to model its use. I settled on removing icons and replacing them with words. Some in the field (Roman-Lantzy, 2019) have suggested that the predictability of print may be more accessible than the ever-changing forms of an image for some individuals with CVI. Logan also uses color-coding and tactile cues for access, so I added color to the display, a keyguard with tactile/raised features, space between buttons, and provided cardinal directions to help him navigate to buttons.
Finding new and creative ways to use his device to increase his access to daily routines is important to me.
I incorporated the use of his communication device in a variety of settings (e.g., academics and therapy) to provide Logan with access to a variety of activities that were out of reach for him due to his complex needs. I connected his device to the iPad and computer to access word processing programs and apps. For example, he now types his full name, address, phone number, and date into a google slides document using his communication device. He is also typing letters into learning apps like Tinytap and Boom cards as we move forward in our journey into literacy. I have been lucky to have the support of his Prentrom representative and their programmers to make many of these adaptations a reality.
The adaptations have evolved as technology has evolved and his functional vision and individual needs have changed. It is not perfect but we are getting there.
Logan needed more communication approaches
Despite his progress with the device, I found that the device was not enough to meet all his communication needs. There were situations where I could not take his device—the pool, beach, or Disney World—because it could get misplaced, stolen, or damaged by the environment. I also found that while I was very comfortable using his device, many professionals and family members were not and it would go untouched. As a result, I shifted my focus to emphasize a total communication approach that would provide Logan with multiple modes of communication.
Read about the total communication approach for Logan!
Dr. Barbara Lopez Avila is a developmental psychologist and a mom to Logan, a child with CVI and complex communication needs. She has held faculty positions at the University of Miami School of Medicine and currently holds a faculty position at Walden University Richard W. Riley College of Education and Leadership.
References:
Bondy, A. S., & Frost, L. A. (1994). The Picture-Exchange Communication System. Focus on Autistic Behavior, 9, 1-19. https://doi.org/10.1177/108835769400900301
Roman-Lantzy (2019). Cortical Visual Impairment: Advanced Principles. APH Press.
