Social Networks : involving families and professionals surrounding children and youth with complex communication needs

• Children with severe communication disabilities are a vulnerable group in the community and are depending on the knowledge, skills and empathy of the people in their immediate surrounding, which include parents, sisters and brothers, relatives and professionals, i.e. the social networks (Klefbeck & Ogden; 1996; Blackstone & Hunt Berg, 2002; Anderson, 2006). The family is of great importance in supporting the communication and language development of the child. The professionals have to create conditions conducive to a positive learning environment, which demands knowledge of disability, language, communication and proximal zone of development (zpd). (Lahey, 1978; Vygotsky, 1986; Bodorova & Leong, 1996). It is significant to consider persons with complex disabilities as active and participating parties in the developmental process (Light & Binger, 1998). Children with disabilities encounter different hindrance in their daily life, in their communication with others and in their learning. Hindrance can be found by the individual himself as well by the persons in the surrounding and in the situation as in structures and principles of the society (Beukleman & Miranda, 1998; WHO, 2001, 2004; Anderson, 2002; Eriksson, 2006). Another reason can be found in indistinctive goals, effort and responsibility according to communication and language development of the child. Various kind of hindrance can be eliminated, among others by identifying and analyzing them, contextualizing them, illuminating facilitating phenomenon and increasing the awareness of the importance of communication by as well professionals as families. This project was made on the thesis from Anderson (2002). The results show that there are both possibilities and obstacles that respectively facilitate and obstruct communicative and linguistic development. These can be related to micro-, meso-, exo and macro levels. Informal communication was characterised by participation and mutual exchange, pleasure in communicating and adults adapting to the child´s perspective. Formal communication was characterised by adults choosing topics for conversation and being purpose-oriented, asking questions, giving instructions and expecting certain answers from the child. The children’s communication was mostly functional, but the adults did not always notice their intentions. The pupils were met by staff members with varied skills in manual signs and it was evident that the children’s communicative and linguistic needs were not necessarily accompanied by a supportive environment that facilitated communication development. Adults in the surroundings need education, training and support in Alternative and Augmentative Communication (AAC) to become competent and challenging communication partner (Beukleman & Miranda, 1998; Light & Binger, 1998; Arts, 2000). Another result shows that language use of parents and teachers with respect to prerequisite and needs of the children influence the expectation and treatment of the children. The starting point of the current project is the social networks surrounding children and youth with complex communication needs caused of, among other things hearing and intellectual disabilities. The target group is children and youth of 6 to 25 years of age and who 2 communicate in linguistic level, but the communication form is not sufficient to understand or express feelings, thoughts, and aims within the family or in daily life situations. Aim of the study The all-embracing aim of the Social Networks project is to examine the communicative competence in the surroundings and follow and illuminate participation and collaborative learning among participants in social networks (families and professionals) related to children with complex communication needs. An underlying purpose is to develop assessment methods, analysing needs and support and to find suitable forms of cooperation. The project contains two parts.

Nyckelord

AAC

Family

Professional

Social Networks

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