A Mother's Unwavering Resolve
Sangeetha Chakrapani's life took an unexpected turn with the arrival of quadruplets, two of whom were diagnosed with autism. Initially advised to reduce
the number of foetuses, she chose to embrace the challenge of raising all four, a decision that profoundly shaped her perspective. Her journey has been one of immense personal growth and self-discovery, moving from a place of surprise and struggle to one of profound acceptance. She emphasizes that while the quadruplets themselves were not a shock, understanding and accepting their autism presented a unique path. This experience has led her to redefine happiness alongside autism, finding hope and opportunity in what initially seemed daunting. Her personal growth mirrored her children's, enabling her to see the world anew and embrace their distinct identities with respect and love. The feeling of isolation was significant, yet it ultimately fueled a deeper connection with herself and her children, transforming her into a resilient advocate.
Championing Neurodivergent Potential
Driven by personal experience, Sangeetha founded the Together Foundation in 2015 to provide essential skill training for young adults with autism. Her motivation stemmed from a discouraging encounter with a hypermarket that dismissed her efforts to sell homemade cookies, highlighting the systemic lack of belief in the capabilities of individuals with autism. This experience solidified her resolve to create an organization that would proactively establish credibility and opportunities. The foundation's subsequent FSSAI certification marked a turning point, enabling them to thrive. Sangeetha champions the creation of 'autism-smart' work environments, urging businesses to develop supportive and inclusive office spaces. She believes this not only taps into the potential of neurodivergent individuals but also fosters manifold job prospects for neurotypical employees, creating a symbiotic ecosystem of employment and understanding.
Shifting Focus: Support Over Cure
The recent Supreme Court ban on unproven stem cell therapies for autism underscores a critical shift in perspective: focusing on support rather than a cure. Sangeetha acknowledges the painful reality for many parents who initially cling to the hope of a cure, exploring various treatments like homoeopathy, ayurveda, and hyperbaric oxygen therapy. However, she stresses the importance of not pursuing treatments that could harm a child, advising parents to conserve their resources for effective interventions. While acknowledging the slow, arduous nature of progress and the scarcity of affordable therapy centers, she finds immense reward in witnessing her children's responses, learning, and growth. This perspective emphasizes acceptance and understanding of autism as a different way of experiencing life, rather than a condition to be eradicated, prioritizing well-being and progress over a definitive cure.
Securing Futures: Residential Living
The looming question of 'What happens after us?' weighs heavily on parents of children with special needs. Sangeetha addresses the growing trend of establishing private residential facilities, acknowledging their importance for providing secure futures for those whose families can afford them. However, she highlights the significant disparity for less privileged families, who often lack awareness of available resources and face prohibitive costs, with monthly fees for assisted living communities frequently exceeding Rs 60,000. The Together Community in Hosur, Tamil Nadu, charges Rs 1 lakh per month for both the individual and their parents. A crucial secondary objective for the foundation is to develop a more affordable residential model, heavily relying on Corporate Social Responsibility (CSR) initiatives to ensure financial accessibility for a broader spectrum of the population.
The Path to Inclusive Education
Despite increased awareness, mainstream schools remain hesitant to admit children with special needs due to insufficient resources and infrastructure. Sangeetha advocates for inclusive education, outlining essential requirements: adequately trained teachers, professional expertise for holistic neurodivergent programs, dedicated space for extra classes, outdoor activities for physical engagement, and assisting staff for managing challenging behaviors. The reliance on costly shadow teachers, whose salaries have surged due to high demand, often puts inclusive education out of reach for middle-income families. She argues for government funding for inclusive education in public and lower-income schools. While acknowledging that 'special schools' are not inherently negative and provide vital services, Sangeetha calls for greater integration and acceptance. She envisions special schools collaborating with neurotypical schools and volunteers to reduce segregation and foster a more interconnected educational environment.
Embracing Life's Complexities
Sangeetha candidly discusses the 'many-splendoured and multiple frustrating aspects' of autism, citing behaviors like repetitive object touching, inappropriate public speech, and difficulty expressing needs, which can lead to challenging actions. She stresses the importance of understanding the triggers behind these behaviors and employing an empathetic, scientific approach to help individuals self-regulate. She notes that professionals often encounter parents at their limit, bewildered by their child's actions despite numerous consultations and treatments. Sangeetha also touches upon the personal toll of stress, mentioning her own weight gain, and emphasizes the profound need for extensive support, love, and care for parents of neurodivergent children from families, professionals, and society. Crucially, she advises parents to recognize when to allow their children to grow and become independent, fostering their autonomy.
