The impact of Rett syndrome in the school environment: challenges and needs
DOI:
https://doi.org/10.29352/mill0224.34345Keywords:
Rett syndrome; rare disease; intrinsic case study; inclusive educationAbstract
Introduction: Rett syndrome is a genetic disease associated with neurological and developmental disorders typically caused by mutations in the MECP2 gene. It mainly affects females and can lead to severe physical and mental abnormalities.
Objective: To learn about the educational needs of a student with Rett Syndrome attending a mainstream school, from an early age and taking into account her family's perspective.
Methods: An intrinsic case study was conducted on a 9-year-old girl who was diagnosed with Rett syndrome at the age of 5 years and is in stage 3 (pseudo-stationary period). The child's school and medical reports, systematic observations, and the mother's testimony were used as data collection instruments.
Results: The results show the impact of the disease from an educational point of view, the educational, care, and social needs, and the main advantages and difficulties of inclusive education. The findings reveal concerns about the lack of coordination between the health and education systems, as well as the contradiction in the information provided, leading to confusion about the best practices for the holistic development of the affected persons and the differences between early intervention and later care which is scarce.
Conclusion: These findings underline the importance of addressing the education of individuals with Rett syndrome in a holistic manner, recognizing both their specific needs and the opportunities and difficulties associated with educational inclusion. Attention to needs must be interdisciplinary, continuous, and long-term.
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