Founder of SAI Connections, Kamini Lakhani shares how acceptance and understanding go a long way in improving the quality of life for an autistic individual
Sixteen-year-old Nafi Padamsee is soaking boondi in warm water to prepare the raita, while his mother Zohra watches closely. In another room, 20-year-old Prasad Ranganathan is chopping cucumber for the salad he is making.
No, it’s not a cooking class that I have entered mid-session or a cooking reality show for kids. It’s Thursday and the children and young people from SAI Connections are preparing a meal to be had for lunch later. “It’s a group activity they do every Thursday,” Kamini Lakhani, the founder of Support for Autistic Individuals – SAI Connections, informs us. Later, we partake in the simple meal of jeera rice, potato bhaji, salad and boondi raita prepared by the children with Autism Spectrum Disorder (ASD). It is delicious.
The third most common development disorder in the world throws up some horrifying statistics. “In the year 2013, there were at least 10 million people with autism in India alone. According to Centers for Disease Control and Prevention in the United States, one in every 68 American children is autistic,” Lakhani tells us. People who have this neurodevelopmental condition which affects the brain’s development and growth, face difficulties communicating and socialising with others and indulge in repetitive behaviour. But while the prognosis seems bleak, Lakhani and many others like her are determined to improve the quality of life for such people. “It’s just a differently-wired brain but once you are able to determine their strengths, then the sky is the limit for them. The keywords are acceptance and understanding,” she states.
A long journey
In 1992, Lakhani’s son Mohit was diagnosed with autism when he was just three years old. “I felt my whole world come crashing down. I didn’t even know what autism was at that time or how it impacts people,” she shares, adding that living in South Korea at that time with hardly any English-speaking professionals and a five-month-old daughter to take care of, didn’t make things any easier.
While she did get help from professionals at an American base in South Korea, Lakhani felt that by and large, there was no contribution being made to the overall development of her child. Taking matters in her own hands, she started visiting the US to get training on how to empower herself in order to handle an autistic child.
Today, Lakhani is an Authorised Director for RDI (Relationship Development Intervention) Professional Training in India and the Middle East and a Board Certified Assistant Behaviour Analyst from USA. Her son Mohit, is today a 26-year-old young man who expresses himself best when he’s painting. “He’s an artist. Most of the paintings you see in the centre have been done by him,” Lakhani beams with pride as we take in the beautiful and bold brush strokes on the many paintings that adorn the walls of the centre.
Empowering mothers, empowering the child
For a couple of years after returning to India in 2002, Lakhani ran another school by the name of SAI. “The focus there was on training staff and setting goals for children. But while my data sheets showed that the kids are improving and doing well, I couldn’t see any generalisation at homes. I realised then that empowerment has to come from the family first,” Lakhani recalls. In 2011, SAI Connections opened in Bandra East with an aim to empower the mothers and the families. “I believe mothers are the best teachers,” the behavioural specialist states a simple fact, “The first relationship a child has is with the mother. Here, we have a model where mothers and children work together. We break down the objectives for parents and the children and have them interact with each other so that their connection is solidified. At the end of the day, no matter how many therapies the child goes for, he goes back home. If the parents are not able to handle their own children, then where are we headed?” she asks. On Wednesdays, she holds training classes for the mothers. “You should see them now, brimming with confidence, knowing that they are making a difference in their children’s lives,” she smiles.
Working in tandem with the parents are the teachers and trained staff who extend the work that the mothers do. The centre has recently come up with a 12-week training program for special educators and therapists treating autism in the city for the first time. “It is for them to get hands-on training by working on cases in India, to enhance their own skills and to become more effective special educators because if we want to create a better world, we have to have a better understanding of the services we provide,” she adds.
Lakhani is aware that the question that plagues most parents’ minds is, ‘After us, what?’ “The sessions here are designed in order to equip these children to become problem-solvers. They need to be trained from now to deal with the everyday problems that life throws at us. For instance, in the cooking sessions, we don’t give them directions on how to cook a certain dish but put them in a spot so they are forced to think and come up with a solution,” she shares. There are classes in art and craft and even a patisserie where they make cakes, breads and cookies for selling purposes. “Many of the individuals here are above 18 years of age, so we are always on the lookout for assisted employment for them,” says Lakhani.
With a plethora of misconceptions around the disorder, awareness is the need of the hour. “While things have changed since the time my son was diagnosed with autism, there is still a huge lacuna when it comes to awareness about ASD, which is looked upon as an intellectual disability by many. But it is not necessary that everyone who has autism has intellectual disability,” clarifies Lakhani, who is horrified when she hears terms like ‘paagal’ or ‘weirdo’ being thrown around for people who are affected by the disorder. “There are misconceptions that children who have autism will never improve. Such assumptions should be just thrown out of the window,” says Lakhani, whose personal blog on the centre’s website is full of success stories, whether it is of Nafi who loves painting, swimming and skating or 16-year-old Aahan Patel, who wants to open a four-wheeler-dealer showroom and wants to take his parents out for long drives in a sedan. “The other day, I received a message from one of our students, who shared that he has got a certificate for 25 per cent improvement. That made my day,” says the lady who wants to create a better world for people like Nafi and Aahan.