How the mother of an autistic child is helping 15 autistic children become self-sufficientAmruta Dongray
Till about four years after birth, Anima Nair’s son did not show any alarming signs; he was active and would never sleep. But when he commenced school, Anima and her husband realised that their son cried continuously and had reduced eye contact. Noises bothered him, he would cover his ears when a plane flew overhead and didn’t play with other kids. While his teacher told Anima that her son was exceptionally good with puzzles, he refused to write. He liked people but couldn’t handle the clamour.
That’s when Anima (42), a post-graduate in Computer Applications, and her husband, got a formal diagnosis for their then five-year-old son. He was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), which is sort of a general basket in which doctors place children who have some features of autism, but not all. It falls on one end of the autism spectrum.
Autism Spectrum Disorder (ASD), the result of a neurological condition, also referred to as pervasive developmental disorder, is characterised by deficits in social interaction, verbal and nonverbal communication, engagement in repetitive behaviour or interests and rigidity in thought and behaviour. Early intervention in ASD helps minimise delays and improves a child’s potential in reaching normal developmental milestones.
For years, Anima was too shocked to accept that her son was autistic. Following her issues with acceptance, Anima found it difficult to work with a child who was seemingly bright but simply couldn’t grasp abstract concepts. She tried and so did her son. Then one day, Anima caved in as it was just too hard. Anima fell into a state of complacency, which she recalls as a bit scary considering that she had no one to pull her out of it but herself. That’s when she decided to take charge of things and help her son in a way no school was willing to.
Anima met Akshayee Shetty (37) when the latter came on board as an Arts Consultant in the school that Anima’s son was enrolled in. Akshayee had done her Masters in Art, Design and Architecture from Scotland and had spent seven years working with autism in an arts organisation. Anima felt that Akshayee had great ideas which resonated with her.
Research shows that individualised, structured teaching fosters the child’s progress and helps improve his/her communication skills, daily living abilities, motor coordination, social skills, and adaptive behaviours. However, there aren’t very many personalised services available for children with autism in India.
Glaring gaps in an already flawed education system led Anima and Akshayee to establish their own centre for autism – Sense Kaleidoscopes, which started operating under the umbrella of the Ayathi Trust three years ago. Sense Kaleidoscopes is a vocational centre for children on the autism spectrum-specifically for adolescents and young adults because they are the ones who need the most help. They believe that equipping autistic children with skills that they can bank on will make them contributors in society. For now, autistic children are marginalised. The centre started with four students. Today, it has fifteen. Akshayee says,
“Sense Kaleidoscopes’ mission is two-fold in nature. Firstly, to open up the diverse arts to break down the barriers that prevent special children from accessing creative/artistic activities. We believe that by exploring creativity, autistic children can experience a range of benefits-art is fun but also a way of developing new skills and improving health and well being. Secondly, to set up learning/developmental disorders specific interactive e-learning units, geared by technology. Through rich multimedia and audio-visual mediums, the curriculum content is mapped to achieve specific goals set out with regards to cognitive, behavioural, social, communication and motor skills listed in the Individual Educational Programmes (IEP). This format aids in illuminating abstract concepts in exciting ways for children to learn.”
Additionally, the centre aims to provide a holistic Information Technology curriculum and specific software processes to help autistic children/young adults to enhance the learning process through interactive hands on practice lab sessions.
Sense Kaleidoscopes is different from other centres for autism in Bengaluru. Other centres in Bengaluru are for early intervention or are schools that deal with special children with a host of different issues. As an approach, it fails most of the time because one cannot teach children with widely different abilities in a group session. Working with autism is not as simple a process. Moreover, being a neurological developmental disorder, the ways or techniques to teach have to be expansive and exhaustive while being experiential, a tall order in such classrooms.
The academic classrooms in Sense Kaleidoscopes are modelled on the classrooms from Scotland. The classroom strength is not more than four or five children. All children have one dedicated teacher who teaches most subjects but focusses on the strengths and weaknesses of the children, thus planning their teaching modules accordingly. They use experiential techniques along with craft and technology to teach concepts. Teachers work on a one-on-one basis with children who have aggressive behavioural issues until they are ready to be clubbed into the correct classroom.
As far their vocational setup is concerned, Sense Kaleidoscopes stands apart, as they are not just any vocational centre but pretty much a sustainable arts school facility for special needs. The intention is to help them explore different facets of the arts like painting, drawing, textures, colours, printing, sculpting, pottery, carpentry etc., and then look into advanced courses in a discipline of their choice. They bring in international artists and plan art gallery shows and are now trying to establish the disability arts market in India. In the academic sphere, the centre works with a syllabus that is specifically designed for autism. It is a blend of concepts that Akshayee and Anima have put together from the CBSE and ICSE programmes to fit the realistic needs of an autistic child.
Besides being trained to teach specialised courses and activities, teachers at the centre are trained to deal with individual triggers. Akshayee is usually always on the floor and available to help any of the children at a moment’s notice. The staff is also trained to handle seizures, which are a common complication in children with autism. Though the centre has volunteers, the founders are looking out for more to join them, especially to give cooking lessons and to take them out for activities.
As of now, there is no external funding. Akshayee and Anima fund Sense Kaleidoscopes from their pockets. They also receive funds from the fees that the centre charges. Since they have a small number of students, it is quite a challenge to keep the centre running. The centre does not receive any government funding as they are still very young. According to the government, to receive funding, a centre has to sustain for a minimum of three years. Sense Kaleidoscopes has just successfully completed three years and is now starting to mobilise all requirements needed to raise funds. Anima takes great pride in sharing the success story of Ayush Bhambhani with us. Anima says –
“Ayush was 15 when he came to us. He was almost completely non-verbal and incapable of sitting and working even for a few minutes at a time. He would lie on the sofa and on being asked to work, would roll on the floor in protest, crying continuously. It took all of Akshayee’s wiles to gain his confidence. Then teachers at the centre found out one interesting fact about Ayush. He was great at a certain kind of art. The kind where specific patterns of lines and curves are created and incredible details then filled in. In a span of six months, Ayush had created more than 50 works. All of it was exhibited at our very first art show ‘Shards of Brilliance’ at Rangoli Art Centre on M.G. Road. Ayush earned close to Rs 90,000. A child who was written off by every professional and school now does commissions and makes around Rs 30,000 a month. Ayush has enough work lined up.”
In the future, Anima and Akshayee wish to make Sense Kaleidoscopes on par with international standards. Besides artists from all over the world mentoring their students, the duo want to create a system by which products created by their students can be merchandised and sold so that the students can make money to sustain themselves. They also want to set up an organic farming space for the students so they learn to live and eat healthy.