What Was That Again, Congenital Disorder Of Glycosylation?

Janelle Roberts

Abstract


New technology and research are continuously changing our understanding of the human body and newly emerging diseases are continuously being discovered. Such as, the case with Congenital Disorder of Glycosylation (CDG), a newly emerging disease creating challenges for Special Education teachers and others who work with children with such conditions. 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 such as those along the autism spectrum disorder. 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 experimented 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 is 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 neurodevelopment disorders, including autism, can also be effective for non- speaking children who have CDG. This research contributes toward a better understanding and awareness of the child diagnosed with CDG and assists Special Education teachers to develop strategies for communicating with such students. The next stage of this project explores how a child with CDG can communicate his feelings clearly and effectively with others.

Keywords


Congenital Disorder of Glycosylation; Augmentative and Alternative Communication; Special Education

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