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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

Some challenges

Some CVI considerations

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.

Boy signs more while sitting on Santa's lap
Logan loved visiting with Santa! He is signing the word, “more.”

Speech Generating Device / AAC system with access to robust language

What works for Logan

Some challenges

Some CVI Considerations

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.

Boy types the letter "o" using his AAC device
Logan types the letter “o” using the keyboard on his device and the TinyTap app.

Gestures

What works for Logan

Some challenges

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

Low tech AAC (picture board)

What works for Logan

Some challenges

How Logan uses this approach

Picture schedule with images for tracing, bathroom, computer, and the number 12
Logan’s visual calendar.
Black token board with yellow letters that that spells our "I want to go out"
Logan’s token board that’s also a literacy strategy!

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


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 

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