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eliana

eliana , andaman
and
nicobar

Eliana (8) sits in a green plastic chair behind a brown wooden table. She wears specs with black frames. Her hair has a centre parting and is tied with a black scrunchy high up on either side of her head. She wears a maroon and white dress with puff sleeves and round collar. On the table to the right there is a plastic structure constructed with pieces like Lego bricks that have been assembled. The structure is red, light blue, yellow and orange. On the table to the left there is a transparent plastic box filled with large plastic beads coloured yellow, green and white. With her right hand Eliana is holding up a pink cord on which she has strung one yellow and two white beads. With her left hand she is reaching for one of several green beads strewn on the table in front of her.
Eliana sits with her legs astride a huge aquamarine blue gym ball. Her arms are extended horizontally on either side of her. The floor is plain cement and the wall behind her is cream. She wears a rose-pink T-shirt and white stretch pants printed with tiny pink, yellow and blue flowers. The T-shirt has the words “I’ve got a dream” in blue running vertically down the front.
Eliana sits in a brown wooden chair behind a table that has a notebook and a textbook spread out on it. She wears a sky-blue pinafore, a blue and white checked blouse beneath it, and sky blue ribbons that tie up her hair on either side of her head. She is writing in the notebook with a pencil in her left hand. Her right arm rests horizontally across the base of the notebook.
Eliana sits crosswise on a bed with her arms bent back and palms resting on the bed. Her knees are bent and feet are placed on another bed in front of her. The two cots are parallel to each other. She wears a blood-red T-shirt and white stretch pants printed with a floral pattern. Both beds are covered with sheets printed in designs in similar earthy shades of mud-brown, cowdung-green, mustard and rust-red.
From left to right: Sitting on a brown wooden sofa with red cushions are Eliana’s grandmother Bernadet Topno (69), Eliana, her mother Sangita Minj (41) and her uncle Deepak Kumar Minj (43). Bernadet wears a black blouse and a synthetic semi-transparent sari in white printed with a pattern of tiny pale orange flowers. She wears specs, gold ear-studs, gold chain and two thin gold bangles on either arm. A beaming Eliana wears her pink T-shirt and white stretch pants printed with flowers. Sangita wears light blue jeans and a black half-sleeved, U-necked top printed with large white flowers. Deepak wears blue jeans and a white T-shirt with a rectangular blue and red panel on the chest printed with JACK AND JONES in white capitals. The wall behind them is the colour of sandal paste. It has a window with a curtain drawn over it. The curtain is olive green printed with a cream floral pattern.
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“My favourite subject is Maths. I enjoy running and playing with the ball”

When a child develops slowly, when speech and locomotion are delayed, family members usually exhibit two opposing reactions: anxiety and denial. “There’s nothing wrong,” say the deniers who tend to be a larger and louder group. “Some children take longer than others to walk and talk.” The anxious ones keenly observe the child’s growth, and hope their worry is misplaced although it remains at the back of their minds.
 
Perhaps it is a good idea to take the worriers seriously. Sangita Minj (41) from the Andamans had studied Home Science and knew all about developmental milestones. When baby Eliana wasn’t crawling at the right time, when she had restricted movements, when she didn’t speak at the age of two, she suggested to her husband Mohammad Samir that they consult a child specialist. But everyone in the family told her she was overthinking. Her mother-in-law said, “Mohammad himself took six years to start speaking properly.”
 
Anyway the couple consulted doctors in the Andamans, who said they found no problem. Sangita still felt something was amiss. They took Eliana to a specialist in Chennai and were told that she had autism, a word they had never heard before. She needs speech therapy, said the doctor. Once they returned to the Andamans, Sangita did a thorough online research on autism and what treatment it needed. Since the island didn’t have speech therapists the couple decided to make Chennai their base every year during school vacation.
 
Of course it was an ordeal finding the right school. Many schools turned her down, asking Sangita. “How could you think of applying to a regular school for a special needs child?” The mainstream school that took her in had no idea how to deal with her behavioral issues. She would talk loudly, spit, and bite herself. The other children started bullying her as well.
 
Fortunately, Port Blair had a mainstream school with a special educator. Eliana, who is now eight years old, has adapted well to Kamraj English Medium School where she is in third standard. She is able to speak. Every year the couple has been taking a house on rent for two months (with an additional deposit) in Chennai for her expensive speech therapy sessions. This has been a drain on their resources. A new complication arose when they found out that her eyes were weak. In December 2019 the doctors recommended an MRI and they intended to get it done in March 2020. Covid-19 put a halt to their plans.
 
Mohammad, who is in commercial shipping, is working abroad to earn and save as much as he can for Eliana’s treatment and the MRI. His natal family lives in Kerala, and since he is away most of the time Sangita stays with her mother Bernadet Topno (69) and brother Deepak Kumar Minj (43) who is a real estate property dealer. Even though everyone in her family shares childcare duties, Sangita feels that the ultimate caregiving responsibility is the mother’s. That is why she does not want to go back to work – she was working in an NGO before Eliana was born and also did a course in fashion designing. The couple decided not to have a second child since they wanted to give all their time and attention to their daughter.
 
Sangita believes that although Eliana falls slightly behind other children in her studies she can catch up with them. Her favourite subject is Maths and she loves cursive writing although she has challenges in reading and spelling. She likes to play with the neighbourhood kids but if she behaves in any way out of the ordinary the parents complain. So Sangita takes her to the local stadium where she enjoys running and playing with the ball. There are paralympic athletes who give free coaching here and Eliana will shortly start training in running, basketball and shot put.
 
At home Eliana likes to watch TV. She enjoys fish and dal – in fact she wants dal every day! She loves her uncle and is most happy when he returns home from work. But Sangita is her constant companion. Deepak describes his sister and niece’s relationship in a charming simile: “She is like a kangaroo who keeps her baby in her pouch close to her always!”
 
Sangita connects with parents of other autistic children. They share learnings and provide support to one another. She says, “I have seen children older than Eliana improve with time and I hope that as the years go by, she will too.”
 

Photos:

Vicky Roy

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