Kashinathan is happy to be at the barrier-free park on the Museum premises on Tuesday morning. The 13-year-old, who has Down syndrome, a genetic disorder, rarely goes outside the house. So he is immensely enjoying the day out at the park, the venue for Uyare, a day-long gathering of children who receive home-based education organised by the North urban resource centre (URC) of the Samagra Shiksha, Kerala (SSK).
Kashinathan has been enrolled at Government Vocational Higher Secondary School, Vattiyurkavu, but receives home-based education once a week by a special educator.
Manjusha, Kashinathan’s mother, says he had a valve surgery when he was one year old, but now requires only follow-ups. However, he does experience problems as a result of Down syndrome, especially in walking.
Financial constraints make it difficult for Manjusha to take him for physiotherapy or speech therapy. “He was getting both initially, but now we cannot afford the travel. Therapy in the private sector is totally unaffordable. However, he does communicate with his two younger siblings and the family, which is some relief.”
Manjusha says Kashinathan has a great rapport with his special educator, but she wants him to start regular schooling the next academic year at least. “We are looking for some accommodation near his school to cut down on travel expenses and allow him to attend regular school so that he can mingle and become independent.”
Manjusha, though, is aware that he will need to work on self-care skills such as eating on his own or using the toilet before he is school ready.
Fourteen-year-old Sneha Murukan is at the gathering with her younger sibling, parents, and grandmother. She has cerebral palsy and needs help with everything, from eating to using the toilet. Sneha’s grandmother says the family has it tough. “Sneha’s younger sister has intellectual disability and mother too has a disability certficate. Her father is recovering from a surgery. There is no income, only expenses, including the monthly rent. In the recent rain, our rented house was flooded, and we had to shift elsewhere.”
She is worried that after her death, there will be no one to look after the family. “We had applied for a house under the LIFE project, and hope that is realised at the earliest. A job for Sneha’s father would also help meet expenses. I came for the gathering because of the support from her special educator Beenakumari.”
Grim stories of families battling health problems together with financial difficulties were plenty at Uyare, but so were examples of love, commitment, and solidarity. Meeting parents who understood what one was going through was important for the families, as also the need to relieve some of the constant worry and stress they were under.
Of the 25 children receiving home-based education who were present at the meet along with their families, five were bed-ridden. Accompanied by their families, the children visited the zoo in electric vehicles. A motivation class by Brahmanayakam Mahadevan followed. Entertainment programmes, fun games, distribution of kits by Y’s Men International, and lunch were arranged on the occasion.
SSK State Project Director Supriya A.R. addressed the participants. Sixty-one children are receiving home-based education under the North URC of the SSK at present.
