Friday, August 30, 2013
Speech Generating Communication Device Makes a Difference for Long Time Sullivan Resident
Pamela Lewis is a 51 year old woman who was referred to our clinic by her physician in April of this year. Pam has cerebral palsy and has great difficulty with communication. As a child Pam was diagnosed with athetoid cerebral palsy—her muscles alternate between floppy and tense resulting in difficulty holding her body in a steady, upright position for sitting posture, walking, control of arms and legs, and control of her head and neck muscles. She has never walked and cannot sit alone. What caused this unfortunate condition and life challenge for Pam was that she was born with her umbilical cord wrapped around her neck—causing anoxia.
Later in her childhood she was diagnosed at Cardinal Glennon Hospital in Saint Louis with mental retardation, however, Pam was thought to be high functioning. Pam had lived at home in Union, Missouri, with her parents Paul and Rita Lewis, 2 brothers and 4 sisters until she was 29 years old. Pam then moved to Sullivan Group Home in Sullivan, Missouri (aka: Sullivan House), where she now lives and is one of its original residents.
Pam’s mother Rita Lewis states: “When parents get older, they worry about the future of their disabled children. We feel blessed that Pam has such a good place to live with loving caregivers. She is happy at Sullivan House.”
Communication has remained a lifetime challenge for Pam. She has athetoid dysarthria, which means she has great difficulty with tongue movement and shaping for vowels and consonants. This very limited range of precise tongue control and movement, along with significantly decreased breath and voice coordination and control, has resulted in Pam learning and producing only limited simple words or part words.
Although Pam historically has had limited options with expressive communication, it has taken Pam a lifetime of persistent effort to say even a few fairly intelligible words or part words. She communicates by answering yes and no questions, short words or the initial part of some words. Pam does use some sign language. It is reported that Pam understands everything when she interacts with the Sullivan Group Home staff and others.
Over the many years Pam has tried different communication devices. The initial devices she used required touching or pointing to pictures, but given Pam’s poor fine motor skills, these options were terribly ineffective. She next tried a pointer strapped to her forehead, which did not work. When Pamela’s parents learned about Dynavox devices, they, and Pam’s siblings, were very excited.
Pam was recently assessed by the Speech-Language Pathologist at Missouri Baptist Sullivan Hospital’s, Sullivan Sports and Rehab Center for potential benefit from an augmentative alternate communication (AAC) device. Given her limited physical abilities, Pam was best suited with a communication device that has an eye tracking accessory. Pam recently received a speech generating communication device: The Dynavox Maestro AAC device with the eye tracking feature.
The eye tracking accessory scans the pupils of Pam’s eyes as she looks at, and activates customized content programmed in her speech generating device. As the icons are activated through eye tracking, Pam can now access pictures, words and functional phrases, enabling her to interact with family and friends. Pam can now tell her parents that she Loves them, can introduce herself, and can formulate basic phrases to communicate with Sullivan Group Home staff members.
According to Pam’s mother, Rita Lewis, “Much progress has been made over Pam’s lifetime (over fifty years) in making life better for handicapped people. So many of the things [i.e., low tech communication boards, equipment or devices] we have bought or looked at didn’t work and it gets very discouraging. The Dynavox seems to have a lot of potential.”
Pam is a people person and delights in the presence of others. She is a joyful person and has a great sense of humor. She enjoys shopping and eating out around town. Pam calls her parents several times a week and visits family at her parent’s home 2 or 3 days each month. Pam has a good social life as the Sullivan House staff takes her on many outings.
She has a local friend who uses an augmentative-alternative communication device and a wheelchair as well. The two women meet, visit and have lunch together with their caregivers. Pam also gives back to her community and volunteers at a local skilled nursing facility, a local Sullivan school and provides trash pick-up at a local Sullivan park.
Pam is currently learning to become more and more proficient with her Dynavox Maestro device. She navigates from page to page, icon to icon, accessing and selecting customized content loaded into the device that allows her to participate and converse with the people who are important to her—Her parents and family members, friends, others in the community that benefit from Pam’s volunteer efforts, and the kind and caring staff at the Sullivan House.
Many Thanks to Rita Lewis for providing information regarding Pam’s history,
and life journey, that made this article possible.
Pictured is James Hanny, MBSH Speech Therapist instructing Pamela Lewis on the AAC device.