Finding Brian’s Voice
A Clinic Spotlight
Mar 13, 2024Brian is a 16-year-old high school student who has been a long-time client at the CIDE Assistive Technology Clinic. Born with severe spastic cerebral palsy resulting in significant motor skill limitations and cortical visual impairment, Brian has been seen for wheelchair seating and mobility services since he was three. At age nine (and two wheelchairs later), Brian and his family expanded his services with the CIDE clinic to include Augmentative Alternative Communication (AAC). At that time, Brian communicated using facial expressions, eye movements, and some limited use of an old AAC device using a single switch. His ability to answer yes/no questions was not 100% clear to his mother, and it was extremely difficult for others to interpret, including his therapist at school. The response of many people in Brian's life was to assume he did not understand what was said to him.
When Brian began speech language pathology services with CIDE, the primary goals were to assess switch access to a new AAC device and establish precise and reliable yes/no responses. Trials of many switches were less than successful, as Brian needed to have voluntary control over the activation and release of a button. Focus was then placed on supporting Brian in choosing two distinctly different motor responses already part of his repertoire, assigning meaning to each movement (yes or no), and training him to use them for communication. Using yes/no questions, Brian could access a low-tech AAC system called a PODD (Pragmatic Organization Dynamic Display) to communicate his wants and preferences, physical needs, and to request assistance.
The PODD system uses a prescribed organization of communication headings to identify the user's intent. The PODD user selects by pointing at a choice or, as in Brian's case, affirming an option with a yes response. A trained communication partner then speaks the message. For instance, if Brian selects the “SOMETHING'S WRONG” heading, he is given a personalized list of phrases to express what might be wrong with him. Similarly, Brian could request or decline items, people, and activities by selecting the “WANT/DON'T WANT” heading. Brian was observed using this system to tell his mother he had pain in his ears, throat, and head. Upon visiting his doctor shortly afterward, he was found to have an ear infection. Using clear yes and no responses with the PODD communication system, Brian can ask for personal care, express his feelings, and (like many teenagers) ask to be left alone.
As Brian grew, he gained more control over his motor movements and showed increased success using a switch to access a high-tech AAC device. While he continues to use someone else's voice to communicate using the low-tech PODD communication system as a backup, he can now formulate 3–6-word sentences with a synthesized voice on the high-tech AAC device. In other words, Brian has a voice! For example, Brian prepared this sentence: "I stop wanting me where [wear] socks." With yes/no clarification, it became clear Brian did not want to wear socks to school because the school was hot. Communication to this degree of specificity has never been available to Brian before. Going into the 11th grade with his AAC device, Brian has clearly demonstrated comprehension, intentional communication, and social engagement to those who initially underestimated his ability to understand and communicate.