All enduring journeys begin from the lingering warmth of a mother's womb. But then there are difficult voyages for some mothers; mothers who challenge the differences bestowed by birth to redeem the lives of their dear kids.
Autism is a challenge and an opportunity- equally for caretakers, society and the affected individual. Onmanorama spoke to three such mothers - mothers who ripped apart conventional intervention patterns and therapies to bring out the best in their children.
Sangeetha John, Anita Pradeep and Smrithy Rajesh have one thing in common — they believe in their children and respond to their needs and differences with utmost compassion.
Sangeetha John's 16-year-old daughter is an author selling her latest book on Amazon.in and Anita's 23-year-old son Brian is an artist specilaising in computer graphics. Smrithy, based out of Bengaluru, is the mother of Advaith, 10, who has been bagging medals in roller-skating at the state level.
“The Autism Specturm could be varied, but the journey of a mother, with a child with a neurological difference, is most often the same. It is one of understanding and acceptance and above all, the deep belief and focus in the abilities of her child," said Seema Lal ,a Kochi-based special educator, psychologist and the co-founder of an child and disability rights advocacy group called 'Together We Can'.
“The journey has been tough, we endure sleepless nights... but once you accept this is a lifelong condition, you have to cope and equip the child," said one of the mothers.
Sangeetha and Sherin
Sangeetha's voice beamed with joy when she picked up the phone. She had great news, her 16-year-old daughter, Sherin Mary Zacharia, diagnosed with Autism, has sold over 500 copies of her latest book 'Moonlight', which was released in March by noted poet Satchidanandan, at the Kriti Book Festival in Kochi.
A mother of two, Sangeetha left her job as a lecturer at the regional centre of the Mahatma Gandhi University in Kochi to focus her attention on her daughter. “Sherin could not go to school. She had really low threshold to auditory overloads, making her time at school difficult.”
Sherin attended a special school till she was 14 and then opted for homeschooling to devote more time for literature.” she said. “She picked up letters and language quicker than other children, but there was no verbal communication. And then around 10 years ago, she scribbled on a piece of paper, 'Do you understand my difficulty now?' Since then there has been no looking back. She kept on writing and I realised that is what made her the happiest,” Sangeetha said.
Thiruvananthapuram MP Shashi Tharoor, who reached out to the blessed poet tweeted later that Sherin's words 'could penetrate the mist'.
Anita and Brian
Anita Pradeep has a 24-year-old son who was diagnosed with Autism when he was around three.
After returning to India from Salalah, Oman, post the diagnosis at AISH Mysore, Brian started school at a Raksha special school. He was mainstreamed when he was around 7 and moved to National Institute of Open Schooling to complete his 10th and 12th. Brian completed the course at his pace as Anita actively watched over him with care , compassion and determination. Today Brian is a student of computer graphics with vibrant imagination and visual learning skills.
“Brian had a strong aptitude for learning. Geography has been his favourite subject and he learned it at his own pace from NIOS," Anita said.
Smrithy and Advaith
Not all children with special needs show an inclination to conventional learning. Smrithy had a hard time getting her son Advaith, who has autism and attention deficit hyperactivity disorders (ADHD), to attend classes. “I have pulled Addu out of danger by a whisker, not once, but many times. Once he was hit by a scooter but escaped unhurt," she said talking about her son whose energy was uncontrollable at times.
Smrithy was one of those mothers who listened more to her child and his special needs than the prescriptions of the therapists. Once she accepted the reality of her son's condition, she lost no time in exploring options.
Advaith was encouraged to take up cycling and swimming. The family encouraged him to take up roller-skating and soon he was strapping the skates on his own. Today, he is a confident person having won gold medals in the skating competitions organised by the Karnataka government's department for the welfare of the disabled in 2017 and 2018 and a silver in the state-level competitions of Special Olympics Bharat, Karnataka, in 2017.
Challenges galore
“If you stay concerned about how people will react, your child will suffer. Brian had issues mingling with others. But I kept on taking him out, literally everywhere, church (though he was petrified of long-bearded priests) and family functions,” Anita said.
“I got the right support from the right places, but quite early on. Instead of worrying about his future it was necessary to sit up and work together with him to make him self reliant. I had to ensure that Brian can cope alone,” she said.
“Now, he enjoys meeting people, he enjoys having people over. He even marks on the calendar when he gets an invite to a function," she revealed.
Both Sangeetha and Smrithy vouch by sticking to what makes their children happy, despite the challenges. “She receives constant encouragement from poets who even invite her to join literary festivals," said Sangeetha referring to her poet daughter Sherin.
“When Advaith went for a skating competition, we had to watch him from far away. Parents were not allowed with him. I wasn't sure if he would overcome his reservations and step into the ring or just shy away,” Smrithy shared her early fears about her son Advaith.
“Roller-skating courses were a great inclusive experience for Addu, he was learning with children in the mainstream. He soon took up basketball and badminton. The winning and recognition made him more confident and he can manage his learning sessions at his special school alone," Smrithy narrated the changes.
"As a mother, I had to balance life and care. My elder son needed care too. Attending special sessions for mothers caring for children with special needs helped bring a balance. This improved the overall happiness quotient at home making life better for all of us and improved the responses of Advaith as well," Smrithy added.
Hope ahead
Advaith's mother Smrithy has a YouTube channel and a Facebook page where she shares the do-at-home therapy sessions for children with developmental disorders.
“It was Advaith who brought me out of my shell. Taking sessions for parents and presenting papers at global conferences, I could do all that for him,” she said.
Smrithy is also proud of her son's range of handmade jewellery, branded in his own name; 'Addu's little creations', which has been earning him his own chunk of money. The mother also shared a dream she has for him — that he would someday represent the country in the Special Olympics.
Meanwhile, Sherin was awarded the first prize in Asia region for her poem 'Mist of Myself' in the 'Unseen and Unspoken ' Poetry Competition, held to raise awareness about the experience of people with different abilities across the Commonwealth.
“Seeing my daughter earn her royalties at 16 from her own collection of poems, I feel I have reached very close to where I pictured myself in life," Sangeetha remarked on a satisfactory note about her daughter's progress.
Anita said Brian has taught her to value relationships, to nurture and enjoy the small joys of life and to love unconditionally. She believes Brian will soon start making posters and continue to actively assist his mother in her small baking venture.
These mothers sought happiness for themselves and their children with neurological differences by working against conventions with sheer will and determination, fueled by unconditional love.
What they trumped in their journey is a system that works on disability and ignores ability. What they sought to build was self-reliance for their children and they have won- inspirationally!
Read: On a Roll