Mamtha Kumari was only 23 when her son Tarak was born. Inspite of consulting many doctors for years, the exact condition of her son, Deficit in Attention, Motor Control and Perception (DAMP syndrome), was never discovered until eight years of his age. However, Mamtha enrolled her son in an early intervention program from 13 months at Spastic Society of Tamil Nadu in Tondairpet and Spastic Society of India in Kotturpuram. This didn’t dampen her spirit; instead, Mamtha started to engage Tarak in therapies and various programmes at home. “It was tough to accept that DAMP was a life-long and challenging disability. What took us by surprise was how my daughter Chetna became his care-giver at such a young age. She enjoyed being with her brother and this changed Chetna’s outlook on life at a young age,” says Mamatha.
When Chetna was in Grade 10, she realised that her life was totally different from others — how people labelled children with disabilities and how it affected families. “This created a huge impact on her and from a young age, she used to tell that she wanted to become a therapist once she grows up,” reminisces Mamtha, who did a Diploma in Autism spectrum disorder in 2011 after clearing her Grade 12 exams from National Institute of Open Schooling in 2010.
Young Chetna used to accompany Tarak to therapy centres and closely observed how the therapy sessions made an impact on her brother. “I can understand my patients/clients and serve them better since I know and have been on both the sides of the coin — how it feels to be part of a family which has a differently-abled/special child as well as being a professional. Later, this became my purpose in life. I have been inspired my many therapists who worked with my brother, which also inspired me to take up this profession,” says Chetna, who is currently pursuing Masters in Speech Language Pathology.
It hit Chetna, even more, when her extended family started showing a little indifference towards her little brother. “In our neighbourhood, we made attempts to create awareness and form a friends group for Tarak. But we failed because the mindset of the people is that the ‘normal’ kids will learn behaviours if they are allowed to mingle with the differently-abled children. This attitude needs to be changed,” she tells us.
There is awareness among people for physically challenged or for a condition like Autism, but there is zero awareness when it comes to individuals with behavioural issues or psychiatric conditions. “These individuals who do not have any issues in their physical appearance or mobility, but have trouble in expressing themselves and have behavioural issues (due to sensory or psychiatric condition) are still being named as mad or mental. The perception in the society is that the birth of a special child in families is because of the karma of the family members and that is not true. This needs to be changed,” she says.
The mother-daughter duo plans to open a centre for special children who are in their teens with multiple issues, who don’t fit in most of the classes with rules and regulations.