May 14 was celebrated as Mother’s Day worldwide including in India. In this Mother’s Day special feature, Aruna Raghuram interviewed Dr. Sumithra Prasad, founder of the DORAI Foundation, Chennai and mother of social entrepreneur Srinivasa Prasad (31), a person with special needs
In 1991 when Srinivasa aka Sahitya was born prematurely, the doctor predicted that he would not live beyond five years of age. He was diagnosed with liver cirrhosis at birth and epilepsy subsequently. In and out of hospitals through infancy, he was diagnosed with ADHD at age five and autism at seven. Heart and lung problems were added to the list of ailments. Through all these trials and tribulations, his mother Dr. Sumithra Prasad didn’t give up.
She homeschooled Sahitya who completed class XII through the National Institute of Open Schooling (NIOS) with baking, confectionery and catering management as electives. In 2013, he came up with the idea of starting a bakery which would employ persons with disabilities.
Now in its tenth year, the SAI Bakery has won several awards including the ‘Best practices for rehabilitation of adults with different disabilities’ citation of the National Institute for Empowerment of Persons with Multiple Disabilities, Chennai. Sahitya was also honoured with the ‘Ashta Vakra Samman — Role Model Award’ in 2017 in Patna.
Through Sahitya’s difficult journey fraught with health complications and disabilities, mom Sumithra has been a rock, cheerleader and valuable role model. Having herself overcome a troubled childhood of drug abuse, Sumithra persevered to complete her post-graduation in psychology from Bombay University followed by a Ph D in psychosocial interventions in community mental health awarded by Pondichery University.
In 2005 she established the DORAI Foundation, an NGO which works in education, community health, creating sustainable livelihood projects for women, skill-building, youth empowerment for the differently abled, supporting people from vulnerable sections of society, and disaster management. SAI Bakery is an initiative of the foundation.
In this interview, Sumithra shares the mother-son’s inspirational journey.
Sahitya was diagnosed with multiple physical ailments during the very first year of his life. As a new mother, how did you cope with this tragedy?
Sahitya was born pre-term on October 2, 1991. It was a normal delivery. We were happy that he shared his birthday with Mahatma Gandhi. Eleven months later we were told he was born with post hepatic cirrhosis of the liver. A few months on, he went into a coma after a fever. It was December of 1992. We were in Mumbai in the post Babri Masjid demolition riots curfew situation and it was difficult to get him to a hospital. He was in a coma for two-and-a-half days. The doctors did not give us much hope. For me, the initial period of motherhood was focused on ensuring the survival of my son.
At three years, things looked better. He could recite the alphabet and chant shlokas effortlessly. His memory was remarkable. I was so happy that Sahitya, who had been so critically ill, was doing well. But this happiness was shortlived.
Subsequently Sahitya was diagnosed with ADHD and autism…
When he was five years old, he was diagnosed with ADHD. Then came another health crisis. Just before he turned seven, he had an epileptic attack. Shortly thereafter he was diagnosed with autism. The third major health crisis came when he developed tuberculosis. He was on life support for two months. When we took him home, his motor abilities were badly affected and he had partial amnesia. At 16, he had to relearn all his daily activities.
Sahitya turned social entrepreneur with SAI Bakery. Please narrate his academic and entrepreneurial journey and challenges.
I always had an academic roadmap for him. But when I enrolled him into NIOS, I wasn’t sure he would complete school. But not only did he complete class X but also Plus Two. It’s in Plus Two that he developed a keen interest in bakery and confectionery. One day he just blurted out: “I want to set up a bakery. We will work from home and my friends will help us.”
Today, SAI bakery produces a range of health snacks including 20 varieties of cookies, muffins, and brownies. Simultaneously hands-on training in baking technology is provided to youth with special needs. A film on the SAI Bakery titled I am Sai won the ‘Jury Mention Award’ at the We Care Film Festival 2016.
Apart from his intrinsic positivity and determination to combat adversity, I think Sahitya is motivated by the faith his parents have in him. For instance, Sahitya is the first person with autism, epilepsy and tachycardia to take a road trip to Ladakh and reach the highest motorable road in 2014. This was a trip he took with his father.
Many parents of children with special needs experience helplessness, frustration and anger. What is your message to them?
Through the years, I have felt anger, helplessness, frustration, and even guilt. Initially, I would ask: “Why me?” As the years went by, my attitude changed to ensuring I do all I can to enable my son to realise his true potential. While my husband is very supportive, I have been primarily responsible for caring for Sahitya. A mother’s role in the life of a special child is critical. I believe that being Sahitya’s mom has enhanced and enriched my own life. I am an achiever because of him. My daughter Saujanya, an expressive art therapist, has also been a very understanding sibling.
My message to special moms is be positive. If your child senses your fear and anxiety, he will be affected negatively. Encourage and train your child to be as self-sufficient as possible. Weaning off in adulthood is vital. Also special parents worry a lot about what will happen after they are gone. My advice is to create other support systems and alternatives. Today, many institutions care for adults with special needs. Most important, treasure every moment with your special child.
