New technology and research are continuously changing our understanding of the human body, and newly emerging diseases are continuously being discovered, such as Congenital Disorder of Glycosylation (CDG). This disease creates challenges for Special Education teachers and others who work with children affected by CDG. The purpose of this project was to increase Special Education teachers’ understanding of the rare congenital disease CDG. Specifically, this project examined the augmentative communication strategies used with persons with CDG who are nonspeaking. There are approximately 1,000 diagnosed cases of CDG worldwide, and these figures are low estimates given that CDG presents like many other syndromes and disorders such as those along the autism spectrum. This project included a literature review of CDG research and a case study of a child with CDG. Using my hands-on experience with a 7-year-old boy with Congenital Disorder of Glycosylation, I tested with Talkables IV, a direct-selection communication device designed to assist individuals with speech or communication disabilities. The case study indicated that the 7-year-old, non-speaking child with CDG was able to use Talkables IV to communicate his essential needs. For example, the child could select what physical activity he wanted to do, given four different choices. Each choice on the Talkables device was programmed with a picture and voice output that says the activity chosen. Data collected during the research study showed that communication strategies used with children with other neurodevelopmental disorders, including autism, can also be effective for non-speaking children who have CDG. This research contributes to a better understanding and awareness of children diagnosed with CDG and assists Special Education teachers to develop strategies for communicating with such students.
What was that again, Congenital Disorder of Glycosylation?.
Undergraduate Review, 9, 128-134.
Available at: https://vc.bridgew.edu/undergrad_rev/vol9/iss1/26
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