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The impact of Canavan's disease on the child's life and her family.
STAVINOHOVÁ, Alena
This bachelor thesis deals with a person with Canavan disease. This is a very rare combination disability in which the individual is completely dependent on the care of another person. The individual with this disability is for all her life at two monthly child, both in mental and physical development. The main goal of thesis is to describe this rare disease. The partial goal is to describe some compensation aids that a person with Canavan disease can use, describe the educational opportunities and benefits for persons with disabilities, thanks to which they can be secured and care in a family environment. I chose this topic because of the rarity of this disease and ignorant society, what this disease is all about. Thanks to long-term cooperation with the family in which the girl lives, I could use the collected information from the birth of a girl to the present situation, when the girl is eight years old.I describe the current knowledge about Canavan disease, deal with various manifestations, such as mental disability, physical disability and epilepsy in the theoretical part with the help of scientific literature. Another part of the thesis is focused on family of a child with disabilities. I deal with the birth of a child, with the associated stages of coping with the birth of a child with a disability and inappropriate educational styles. Next, I describe the various benefits, to which the individual with disabilities has a claim. The third part contains a topic of comprehensive rehabilitation. I describe individual means of comprehensive rehabilitation, which we classify medical, social, educational and labor means. In the fourth paragraph of the theoretical part, I deal with the education of children and pupils with disabilities. I describe the importance of early intervention as for individuals with disabilities as their families, training programs such as the Framework Educational Program and School Educational Program. I deal with the possibilities of education of children and pupils with disabilities both in early childhood education and in primary education and related methods of compulsory school attendance. I describe schools established independently for pupils with special educational needs, the possibility of integration, activity assistant teacher, an individual education plan and school counseling facilities, which fulfills an important role in the integration of children, pupils and students. All the above-mentioned areas concerning education of children and pupils with special educational needs are complement laws and regulations that govern them. The practical part of the thesis is divided into two parts. The first part includes a case study of the family of a girl with Canavan disease. The case study includes a medical history, where I describe in detail the difficult course of detection of this disease. It also includes family and social history, which describes the family situation and housing conditions, in which the girl lives with Canavan disease. I deal with school attendance of girl and individual areas of education. I especially describe the development of girl from birth to current health status and taken medication. In the practical part, I also included the benefits that the girl receives and used assistive devices. I put pictures of the tools to the text for a complete idea of each assistive device. Some photos also contain a girl with Canavan disease. The second part of the practical part contains two interviews with mothers who had a child with Canavan disease. The purpose of these interviews was to obtain and compare the answers to predetermined questions. This work could be a source of information for parents, which a child is born with Canavan disease or otherwise heavily disabled child. It could be beneficial for anyone who wants to know more information about Canavan disease.
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