‘Among’ children with Down syndrome: Undeterred by doubt and fear

DIMAPUR — They like to wake up by 6 am every morning, wash-up, have breakfast and take a break (playtime). Then they have food and put on their favourite red colour shirt, take a walk till the gate and back to their room before getting ready for the day’s class.

This is the daily routine of three children — Along age 13, Akala 12 and Lanu 10 — with Down syndrome, who live with their guardian, Among Aier, at her two-bedroom bamboo house located at Duncan Basti in Dimapur, for which she pays a monthly rent of INR 3000.

A five-year old girl named Liyan, also with Down syndrome, joins the trio as a day scholar.

The children, wearing similar red colour shirts and with backpacks containing lunch boxes and water bottles, set out for a three-hour class from 9 am to 12 noon daily.

Aier, who has a certificate in Special Education (2-year course) from Guwahati in Assam, engages them in writing, reading, colouring, singing, dancing and audio-visual class.

Love, joy and worry are indispensable while taking care of children with Down syndrome but it is also a celebration of life, she told Eastern Mirror at her rented house, where she lives with her husband and four children, including three with Down syndrome and a boy.

A former teacher at Mother Mary’s Blessings, a school for spastic and children with intellectual disability under the aegis of St. Mary’s Montessori and Hr. Sec. School in Dimapur, she started her home-based schooling for Down syndrome children in 2015 with one child named Along, who was five years old then.

She and her husband dedicated to taking care of the boy, who was brought in by his family after his parents went through a divorce. 

She shared that she along with a friend started Silver Lines Academy in Dimapur, a school for children with disability, but was forced to close down during the pandemic. That made her focus on her home-based schooling for children with Down syndrome, which has always been her dream.

In 2016, a four-year-old girl named Akala (now 12 years old) with Down syndrome joined the family along her younger brother (with no disability) after their mother passed away. Her brother studies at a private school in Dimapur.

On taking in the brother-sister duo, Aier said that “they should not lose the bond of siblings and have to know each other and understand each other. If they live separately, there are high chances that both will not remember each other and the brother will not understand the condition of his sister”.

In 2022, an 8-year-old child named Lanu (now 10 years old) joined the family, taking the number of children to four.

Aier said that she has a cousin with Down syndrome, so she can understand and relate with them. She added that she decided to give her life a new direction by helping them.

“My husband and I have no child of our own so I believe we have been chosen by God to be caretaker of children with Down syndrome. I chose them and they chose me through fate. Every child is special, but some children have needs that are considered extra special and I chose to help children with Down syndrome,” she shared.

She added that the last nine years have been one of dedication and compassion, with her husband as her strongest support system.

Improving quality of life

According to Aier, providing proper care early on can improve quality of life for persons with Down syndrome, and this can be achieved by making them independent, taking them out for recreation, travelling and socialising.

For progress, our main focus should be to give them exposure so that they don’t confine themselves and have stranger anxiety, she asserted, while stressing the importance giving time do that they don’t feel neglected.

“In order to help the children come out of their shell, at times, I take them out for adventure, make them experience eating out at restaurants, KFC, travel to Kohima and Guwahati for them to experience train and bus ride. I want to help children with Down syndrome to be independent,” she said.

They may be intellectually slow but they have feelings and can sense what is happening around them, she added.

While admitting to facing doubt and fear, she said that she has learnt to take it in her stride and move on.

Maintaining that not owning a house won’t prevent her from caring for the children, she said: “There has been not a single day when we have slept hungry or discontented.”

‘I am at a happy place’

Aier said that when a special child, ‘we sense and realise what unconditional love is’.

“I am at a happy place when I am with them as there is so much to learn from them every day. Most importantly, I learn to be patient and give back love without any expectations, and society should also embrace them unconditionally to understand the unseen love,” she said.

The children are sent home during the Christmas holidays if the families are willing but she keeps Akala with her, as she is still in the process of adjusting and learning.

“I have no plans to abandon them and will continue to take care of them till their families want me to do so,” she affirmed.

In the meantime, not every day is a happy day as she also faces the mood swings of the children.

“In such times, we should understand them and that they are extra special which is why they need special care. I respect their mood swings and we should also understand that,” she explained.

Importance of education

Aier makes sure that her children participate in ‘Special Olympics’, goes to Sunday school and attend Sunday Church service so that they feel included and the community includes them as well.

Also advocating for inclusivity of children with special needs in schools, she said that ‘sharing of classrooms should be encouraged so that the normal children can understand the behaviour of the special children and have compassion and acceptance’.

Even if inclusive education is not possible, schools should encourage a separate school under the aegis of their school for children with special needs. This will at least lessen the burden on the parents seeking to provide education for their child, she suggested.

Beaming with pride

Speaking about her children, Aier said that Along is very hospitable and good in welcoming guests at home; Lanu is always ready to lend a hand; Akala likes to dance and has won 2nd position in Dance competition conducted online by Special Olympic in 2021; and Liyan loves singing and dancing.

Every one of them has hidden talents, so does every child with special needs, she said, adding that it only takes patience, love and time spend with them to understand their God-gifted talent.

She went on to say that she continues to receive requests from parents and guardians to take care of their children too but had to turn down at the moment due to limited space (2-bedroom house).

However, she is on a lookout for a bigger house so that she can accommodate more children.