Mothers of children with special needs – active participants in special needs societies

摘要

The thesis aims to establish, whether the below mentioned factors influence the decision of mothers of children with special needs to become active members of the already established special needs societies or their decision to establish a new society: the manner of communicating the information about the special needs of the child, the attitude of the experts in early intervention, the response of the closer and wider environments on the news about the special needs of the child, previous experiences of mothers with persons with special needs. Moreover, we were interested to discover, if the mothers have set themselves any goals leading their engagement and if they are cooperating with other societies in their realisation. ududThe focus on the mothers is based on the findings in the literature that they are the ones to assume the care for the children in most of the cases. The research includes mothers, which are active participants in the already established nationally recognised and spread societies, as well as mothers that have established new societies, whereby we consider as new those that were established after 2010, and have children that can be classified in different groups of children with special needs, such as: children with intellectual disability, movement-impaired children and children with autism spectrum disorder. The term mothers as active participants in special needs societies is intended to signify mothers, which are active participants in the planning, execution of the programmes and activities of the societies, as well as those that are participating in the boards/committees of the societies or are among the continuing members of the society. ududWe were interested to find out, if there are any differences among the above mentioned factors in relation to the group of the children with special needs to which a child has been assigned and considering also whether the mother is an active participant in the already established society or she has established a new one. The consideration has been given also to the question, if there are any differences in the goals and aims the mothers have set to themselves in their engagement in the already existing or newly established societies and what were the intentions for them to set the new ones up. ududThe theoretical part of the thesis focuses on the findings from the secondary sources about the following fields: family and children with special needs, how do parents face and deal with the special needs of the child, the responses and reactions of the closer and wider environments, cooperation between parents and experts, societies for persons with special needs.ududThe empirical part includes the qualitative analysis of the answers from the half-structured interview. Based on the analysis we came to the following conclusions. The experts have delivered the news about the special needs of the children to the mothers in an inadequate manner, moreover, they have not offered them the needed support (information, counselling). Only some children were partially included in the early intervention, which is considered as inefficient according to the mothers. The mothers have faced the child’s condition with the support from the family. Special attention has to be given to the siblings of the children with severe mental health disorder. The most negative experiences had mothers in the wider environment. They are trying to fight this with awareness raising. Mothers have no or little experiences with special needs persons before the birth of their children. They have set themselves the same goals, without difference to their participation in the already established or new societies. However, there are differences in their views on the adequate treatment of children with special needs. Those mothers that are active in the already established societies agree more with the methods and ways of working in such institutions than those that have decided to establish a new ones. The latter have based their decision to set up a new society due to the disagreement with the methods and ways of working in the existing ones, and based on the judgement that the public system does not offer adequate treatment for the specific needs of their children. The mothers agree that stronger cooperation among societies could lead to the improvement of the conditions in dealing with the persons with special needs. In more concrete terms, in practice mothers active in already well established societies are more inclined and ready to foster such cooperation.udud