Article
A total communication approach for my son with CVI
Barbara Lopez Avila discusses what total communication looks like for her son, which includes ASL, gestures, and high- and low-tech AAC
By: Barbara Avila Lopez
Every day Logan needs to communicate with his teachers, friends, family members, and providers—this diverse group of communication partners are not fully trained nor all have experience with AAC. And every day, Logan goes between various environments like home, school, and community spaces—all of which present their own set of challenges for a child with CVI and complex communication needs. I wanted Logan to be able to communicate with a variety of people in all types of environments.
The problem became clear: Logan needed a flexible and inclusive approach to communication.
The problem became clear: Logan needed a flexible and inclusive approach to communication. This took some time to figure out. I had spent so much time and effort learning about his AAC device. (I completed the professional training to figure out how to use his device and made sure that the manufacturer provided training to all the professionals involved with my child.)
Logan’s AAC is an important part of his total communication plan, but it can’t be his only communication strategy. So I pursued other communication modalities for Logan. I want Logan to be able to communicate with others in a wide range of life’s situations.
I settled on the total communication approach which allows Logan to share his wants and needs with others using gestures, sign language, individual word/picture cards, and his AAC device. Why do we combine so many different approaches? We have found there is no perfect approach that can be used in all settings and understood by all communication partners. Like you and I, Logan chooses between all communication modalities at his disposal.
What is total communication?
A total communication approach is accepting all forms of communication from an individual and has its origins in deaf education (Schwartz, 1987). This can include verbal, sign language, gestures, facial expressions, and all forms of AAC (e.g, PECs, communication boards, speech-generating devices). During typical language development, children use multiple channels to express themselves and communicate with others (Vigliocco et al., 2014).
Total communication draws from typical language development by accepting a variety of forms of communication. The specific compilation of communication methods is unique to the individual. This inclusive approach can be beneficial to increase communication across situations and communication partners.
Each of the total communication approaches has advantages and challenges—and the challenges increase when a child has CVI. No one communication strategy can meet an individual’s needs in every situation. Providing the individual with a variety of communication tools allows them to choose the one that best meets their needs in a given situation.
Here are examples of the total communication approaches Logan uses. This list shows all that I’ve had to think about and consider, and is meant to inspire inquiry about what works best for your child with CVI.
Sign language (ASL)
What works for Logan
- No device to charge or carry
- Always available
- Able to deliver quick messages in any setting
- Can focus on learning one or two signs at a time so it is less overwhelming
- Many teachers and professionals know basic ASL and there are accessible ways to learn it, for example free youtube videos.
Some challenges
- If fine motor ability is limited, you may need to modify the approach to sign to increase accessibility. Short phrases may work best and could help reduce fatigue.
- Not everyone knows sign language and may only be understood in limited settings
- Visual modeling may be difficult to visually attend to and recognize for children with CVI
Some CVI considerations
- Tactile sign language may be useful to teach sign
- Use of AAC to reinforce sign by modeling on the device
- Reinforce with word or picture cards adapted based on learning media evaluation
How Logan uses this approach: Logan has limited control over his right hand. He only closes his left hand to sign “more” and keeps his right hand open. He will immediately sign “more” during a favorite activity like going down the slide. He will also sign “all done” if he dislikes an activity.
Speech Generating Device / AAC system with access to robust language
What works for Logan
- Ability to express full sentences and access to a large amount of language with infinite possibilities for communication
- Verbal output can be understood by most
- Many are customizable to meet his individualized needs
Some challenges
- Requires training which can be time consuming
- Can be intimidating for some
- Icons/symbols may be difficult to visually recognize for some with CVI (based on CVI assessment results)
Some CVI Considerations
- AAC must be individualized and incorporate the results of the child’s CVI and LMA assessments
- Visual clutter increases with the number of icons presented
- A device is customizable—can change background, button colors, size of buttons, add real pictures, reduce the number of buttons in a page, etc.
How Logan uses this approach: Logan does not use icons because he has difficulty interpreting more than two abstract pictures at a time when presented so close together. We use the word builder function to mask buttons to reduce the visual clutter. New buttons are unmasked, taught to him, and then become part of his vocabulary.
Gestures
What works for Logan
- Always available and can use in any setting
Some challenges
- May not be understood by unfamiliar people
How Logan uses this approach: Much like many kids with CVI, Logan thrives in a routine to help him make sense of his day and frequently requests information about what is next through distinctive gestures. Logan will
- Point to an item that belongs to a family member to ask about them
- Point to his sister’s chair and signs “home” to ask when she’s coming home from school
- Mimics the knocking from his favorite YouTube video to ask for his iPad
- Point to his forehead (associating the temperature check with therapy) to ask about therapy
Low tech AAC (picture board)
What works for Logan
- Easy to carry and have available for use
- Training needs are not as a heavy lift as a high-tech AAC device
- Customizable to meet individual needs (and can be visual, tactile, or auditory)
Some challenges
- General AAC training needed
- Limited vocabulary available and access to language
- Pictures/icons may not be visually recognizable
- Visual clutter increases with the number of items presented
How Logan uses this approach
- We use picture cards of real objects and words for visual calendars, schedules and token words.
- To reinforce recognition of his therapist names in his AAC device, we printed the names using the same color font as they appear on his device and posted them in his visual schedule so he knows which therapist and in what order he should expect them daily. Logan will often point to the card that says the name of his therapist to ask about them.
- We do not present more than three words or pictures at a time to reduce visual clutter.
- One exception is his token board which holds 10 tokens. Logan is very familiar with this item. We started with stars and then moved to numbers. First one to 10 and then 10 to 20. We found this to be very helpful for him to practice number recognition and increase his basic number sense (e.g, number order similar to a number line). We recently changed the tokens to a phrase as a way to reinforce letter recognition and how they come together to form words as we work toward literacy.
Communication is an evolving process—as my son continues to grow and develop, his communication strategies will also grow with him. This is not something that developed overnight or after a couple of months with his speech therapist. His strategies are a result of many trials with different strategies over several years with a myriad of providers. Collaboration with multiple providers is essential to progress.
We recognize that the impact of CVI is expected to change as an individual may experience more visual access or if there are setbacks due to medical issues. We also know the profound effect of fatigue on vision use. A total, flexible communication approach that is individualized and able to adapt as the individual changes and grows is essential.
Learn more about CVI and complex communication needs
- Navigating my son’s CVI and complex communication needs
- CVI and communication: Augmentative and alternative communication (AAC)
- 5 essential steps to finding the best AAC system for a learner with CVI
- Two examples of how learners with CVI use AAC
- Childhood Apraxia of Speech (CAS) in children with CVI
Dr. Barbara Lopez Avila is a developmental psychologist and a mom to 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:
Schwartz, S. (1987). Choices in Deafness: A Parents’ Guide to Communication Options. Woodbine House.
Vigliocco, G., Perniss, P., & Vinson, D. (2014). Language as a multimodal phenomenon: Implications for language learning, processing and evolution. Philosophical Transactions of the Royal Society B: Biological Sciences, 369(1651), 20130292. https://doi.org/10.1098/rstb.2013.0292
