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AAC for children with progressive conditions due to a neurodegenerative disorder –examples of (best) practice

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The presentation is based on the results of a PhD-project of qualitative research about the process of communication in children with MPS/ type III (Sanfilippo-Syndrom) and on practical experience of consulting and guiding parents and caregivers on their individual journey with AAC.
The intention of the presentation is to encourage parents and caregivers to use different methods and strategies of AAC as a helpful tool in daily life. All children - and therefore also children with neurodegenerative conditions - are driven by a high motivation for communication.
AAC can be considered as very important in the function of an adaptive input strategy as well as in the active mode to compensate loss of speech. Last but not least strategies for maintaining social contact and interaction in verbal and nonverbal modes play an outstanding role for well-being and quality of life for both – child and caregiver.
Introduction of AAC is recommended as early as possible but can also be applied in advanced stages of the disease. Examples of individual learning processes of children in different stages - despite any prognosis of decline – are convincing. An attentive documentation of the current vocabulary, the strategies of the child and their caregivers as well as a person in the function of a facilitator for AAC seem to be essential for sustainable success in the long-term process. Challenges and limits due to the conditions of the progressive course and environmental barriers in the institutional and familiar context of the child will be discussed.


Birgit Hennig    
Carl von Ossietzky Universität Oldenburg


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