Parenting primer for children with disability

With officialdom and society stacked against children with disabilities, parenting children with special needs requires and demands steely resolve, determination, patience, time, and often physical effort writes Cynthia John & Mini P. On May 31, national roller skating champion Advaith Ramesh (15), who is diagnosed with autism spectrum disorder, was denied permission to board a Sri Lanka Airlines flight at Kempegowda International Airport, Bengaluru. According to the airline’s staff, the 15-year-old athlete was a safety threat to pilots and passengers. Advaith’s parents, who had meticulously planned a family vacation in the Maldives, were outraged by the suggestion that their son posed a danger to the flight passengers. After several hours of discussion and heated arguments during which mom Smrithy Rajesh produced Advaith’s unique disability ID card issued by the Government of India and previous travel history of flights to Dubai, Advaith was allowed to board the flight. This incident of official and public apathy, indifference and hostility towards Advaith resonates with hundreds of parents of children with special needs (CWSN) across the country. Every day, parents of CWSN are confronted with accessibility, inclusivity and acceptability challenges in schools, public transport and public spaces and also from society. According to a 2019 Unesco report, India hosts 7.8 million children with disability, including physical and mental disabilities. Of them, 75 percent are not enrolled in any education institution. Moreover, the report says that 24 percent of CWSN are less likely to receive early stimulation and response care; 42 percent unlikely to have foundational reading and numeracy skills; 51 percent experience unhappiness; 41 percent likely to have experienced discrimination; and 32 percent severe corporal punishment. With officialdom and society stacked against children with disabilities, parenting special children requires and demands steely resolve, determination, patience, time, and often physical effort. Parents of CWSN experience a roller coaster of emotions and experiences, from denial, realisation, acceptance, guilt, self-pity to sheer physical fatigue and stress. A 2009 study published in the Journal of Autism & Developmental Disorders found that mothers of adolescents and adults with autism had levels of stress hormones comparable to soldiers in armed combat. “Despite knowing that it’s not easy to raise a child with special needs, we chose to adopt one. She had a heart problem as well as other development issues. Dealing with people around us and answering their questions was tough. Within a year of adoption, we had to take her through surgery. It was a stressful period. We know that the future may also be difficult but we believe that with love and care we can enable her to realise her true potential,” says Dr. George Cherian, a Bangalore-based ophthalmologist, who has one biological child and two adopted children including a CWSN. When the authors of this narrative interviewed a handful of parents with CWSN, most of them revealed they suffered exhaustion and that their reserves of time and resources for self-care are more depleted than of parents of ‘normal’ children. Yet their need for refuelling is also greater.…