This is a glimpse into the first part of my Ph.D. thesis, where I explore the reasons behind my research. It's all about understanding the holistic view of caring for people with physical or mental disabilities, a journey that spans 23 years. In the early days of my work, the focus was on rehabilitation in specialized settings, with minimal interaction with families and communities. I started to realize the importance of listening to the mothers of children with disabilities when I became a mother myself and faced the same struggles. I began to learn about the hardships these mothers face, from mistreatment by the system to a lack of understanding in their communities. The turning point was a shocking incident where an autistic child broke his arm during a therapy session, and the mother was kept outside, unaware of what happened. This practice, which had never been questioned before, raised significant concerns. We gathered evidence from mothers whose children experienced malpractice and petitioned for caregivers to be included in therapy. The response was disheartening, with experts dismissing our evidence, claiming that mothers would hinder the process. This experience raised crucial questions about the rights of children, the role of parents, and the influence of experts in decision-making. It led me to explore these issues in my thesis. The link between mental illness and abuse is well-known, and my research aims to address the gap in understanding the role of parents in safeguarding children's rights. Mothers play a crucial role in supporting and protecting their children, and this thesis delves into the value of their knowledge and agency. It seeks to uncover why these aspects often go untapped and how they can be integrated into policy and practice. This research is informed by lived experiences and aims to shed light on the importance of harnessing the knowledge and agency of mothers of children with autism. The focus gradually narrows to explore specific aspects, and the journey continues in the upcoming sections of the thesis. Stay tuned for more updates.
