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“I want to watch TV all the time. I get scared of sudden loud sounds”

Elation Sultan (9) recognises the sound of his father’s car coming home at night. When he hears it he starts imitating the engine sound “hmmm, mmm” and wearing a huge smile he drags his body towards the door. The second child of Eleaner and Edwin from Chouldari village in South Andaman, Elation has multiple disabilities that keep him housebound.
 
When a second child is born the mother is naturally inclined to compare it with the first, and this was the case with Eleaner. Elation was born four years after Edoo and when he continued to lie on his back and wouldn’t turn over even after six months, she and Edwin took him to the “big hospital” where the doctor said, it’s too early to pronounce a diagnosis, come back later when he is a little older.
 
“I used to help him sit up,” Eleaner recalls. “When he turned one he still wouldn’t eat on his own or do the things other children would. He was three when a teacher at the anganwadi [government crèche] asked us to get him checked by a doctor. The doctor said he was not mentally fit. Then we went to the big hospital and the doctors told us the same thing.”
 
But an intellectual disability is not the only condition Elation has. Eleaner, who has studied till Grade 12, can only describe what he cannot do. “He cannot walk or talk,” she says. “When he was younger I tried getting him to use a walker but he would scream and cry. He cannot sit on his own. I have to carry him everywhere.” When the EGS interviewer asked her if he had ever had therapy she blinked. “What is that?” she asked. When she tried explaining it to her she said, “No, no, I don’t understand what you mean.”
 
Edwin is a policeman in the India Reserve Battalion (IRB). In fact they live in the same police quarters that Ansosna Kerketta and Kuldeep Minj, parents of Abhash Minj (whose story we published recently), live in. Since Edwin leaves for work at 6 a.m. and returns by 9 p.m. and sometimes doesn’t come home for three months at a stretch when he is on ‘deputation’ (temporarily transferred), Eleaner remains the primary caregiver of her three boys including seven-year-old Massie.
 
“It is not easy for me to manage the kids, the house and Elation,” she says. “I wake up at 4 a.m. to pack my husband’s lunch, do the housework and then take care of Elation.” Her sister used to come and help but now she takes care of their ageing father in Nicobar. “I understand, everybody is busy with their own responsibilities, so I don’t have a lot of support.” Ansosna generously offers to take care of Elation when Eleaner has to step out. “I feel guilty because she has her own kid to look after and I shouldn’t trouble her,” she says. “I ask for her help only sometimes.”
 
Edoo and Massie go to the government Port Mout School while Elation stays at home. “He cries when he is hungry and I have to feed him,” says Eleaner. “Sometimes I try keeping a plate of roti next to him to see if he will feed himself but he simply flings the food away. He cannot communicate when he needs to use the toilet so he often pees in his pants. We put on a diaper for him only when we go out; if he uses it all the time he will get rashes.”
 
Elation seems to have sensory issues because when he hears sudden loud noises – of steel utensils falling, for instance – he starts wailing. Besides loud sounds it is cold that makes him cry. He laughs and giggles when he finds something funny on TV; in fact he wants to watch TV all the time – not cartoons but anything Eleaner watches – and he starts bawling when she switches it off. When Edwin comes home he takes Elation out for a spin in the car; since he cannot sit for too long it’s always a brief round or two. Indoors, he enjoys sitting in his battery-operated toy jeep.
 
Edoo, who is in Grade 10, is a thoughtful, dependable lad. “He sees me struggling and helps around the house,” says Eleaner. “He takes care of his brothers. He helps in cleaning and cooking too.” She adds, “If Elation had a wheelchair, that would make it a lot easier on me.”