How an ex-BBC journalist steals hearts of Down Syndrome kids with her stories

Shivani Dhillon
Shivani Dhillon with the book 'Extra'. Written by children’s author Archana Mohan and illustrated by Prarthana Merchant the book has Shivani's daughter as a character in it. Photo: Facebook/ DownSyndromeSupportGroupIndia

When she had her periods for the first time, Shreya did not panic. She just cried.

Shreya is no ordinary child. She, as her mother Shivani Dhillon, would put it, is the one with the “extra chromosome”; a “neuro-typical” human has 46 chromosomes but she, a “neuro-divergent” girl, has 47. Shreya has Down Syndrome.

Shivani, a therapeutic storyteller, had been telling Shreya about periods, counselling her on its imminence long before she had hit puberty. “Otherwise when they get periods, it's like falling off a cliff. In this free fall, the parents will never know what to do. They try many things in desperation and their child would not know what's happening,” Shivani said.

That is why Shivani had introduced Shreya to the story of “blood-stained pads” early.

“In spite of that, the day she got her periods, she silently cried. She didn't say anything, she wasn't howling,” Shivani said. Shivani pointed to the blood and spoke to Shreya like any mother would to her child when she spotted a monkey or elephant the little one had known only through stories.

“I said, 'Look darling, this is the same thing mama had been telling you'. And she just sat and cried, as if she knew that everything had changed,” Shivani said.

Life-altering events

Stories have been the former journalist's way of communicating with her girl. She even chucked her dream job, as a presenter and reporter with the BBC World Service in London, to weave stories for her child.

“It was a dream job and the career was really great. And then I had my daughter. She was diagnosed with Down Syndrome,” Shivani told Onmanorama on the sidelines of the International Conference on Comprehensive Education for Children with Special Needs organised by Different Art Centre, Thiruvananthapuram, and Adelphi University, New York, USA.

She also had an elder son, Aviraj, who had severe health issues. “He doesn't have a disability. But he has a severe skin condition in which his skin just peeled off. We had to cloth him differently. He required special clothing, wet wraps they were called. He had asthma. Food allergies. He couldn't eat normal food. He was in and out of hospitals,” Shivani said.

Great Indian shock

Though the medical care in England was excellent, Shivani wanted a bigger support system for her kids. “After Shreya was one-and-a-half, we went back. We have a huge family in Chandigarh, childhood friends. I have been brought up in Chandigarh. That's the city I love,” This was 2011.

The initial years spooked her. The illiteracy surrounding Down Syndrome knocked Shivani off balance. “It was like I was thrown in the deep end. I didn't know where to go, whom to talk to. Therapies were hard to find. Google was there, but non-existent. Facebook was just about there. WhatsApp was not there. The doctors had no idea. I could not even find another parent,” she said.

Shivani then found a way out. Two months after reaching India, she started printing leaflets about Down Syndrome, in Hindi, Punjabi and English. It had a brief on the condition with pictures, the tests pregnant mothers have to mandatorily take, her contact number and email address. “This was my need. I wanted to connect with another parent.”

It was a dream job (as a presenter and reporter with the BBC World Service in London) and the career was really great. And then I had my daughter. She was diagnosed with Down Syndrome

Shivani Dhillon

SOS signal and response

She went to government hospitals, placed these pamphlets in departments like Speech & Hearing, Cardiology and ENT where parents of children with Down Syndrome could possibly visit. In two months, she got her first call, from a parent who had a son the same age as Shreya.

“When I met her I realised the importance of having a fellow parent to talk to. The support that you get from this parent you cannot find from your typical childhood friend. Only a parent of a special child can understand my journey,” she said.

That is when Shivani thought of starting a support group: Down Syndrome Support Group India. It began as a Facebook page, with one parent. Now this page is followed by over 2500 parents across the country.

Shivani Dhillon at the International Conference on Comprehensive Education for Children with Special Needs organised by Different Art Centre, Thiruvananthapuram, and Adelphi University, New York, USA. Photo: Onmanorama

A casual drive with kids

In the initial stages, she did workshops. Her husband had opened a restaurant chain and her workshops were held in these outlets. Even at this stage Shivani was not doing storytelling.

The former BBC journalist discovered the cathartic power of stories in a most unlikely moment, on a sunny afternoon when she returned home after a little drive with her children.

Shreya had this habit of not getting out of the car. She had difficulty transitioning from one activity to another. On this day, a typically patient Shivani, flew off the handle.

“When I told her it was time to get out of the car, she stayed on like any other day. I bombarded her with instructions but it was like her brain had switched off. She was not processing anything that I was telling and I am thinking 'why is she not listening to what I am saying'. I got hyper. My other child is also inside, he too can't get outside. I am torn between my two children. I didn't want my neuro-typical (term for normal kids) child to go through this. But I also wanted to remain patient for my neuro-divergent (term for differently-abled) child.”

That was when she made her first story.

The first story

She went inside the house, took an A4 sheet from her printer, folded it, and created an instant handmade comic book story. 

“I drew a car, put some stick figures on it. Told her these were mama, Aviraj and Shreya. In one panel, the three are in the car. In another, mama and Aviraj were out of the car but Shreya is inside, and mama's and Aviraj's faces are shown as sad. In yet another, Shreya is also out of the car, and I drew happy faces,” Shivani said.

She showed the drawing to Shreya and read out what was written. “I am telling her and showing her. They are visual learners. I read the story to her thrice and it had a positive impact. She came out of the car,” Shivani said. 

The impact was so lasting that Shreya had never ever been reluctant to come out of the car.

This was Shivan's 'eureka' moment. “If this can happen with Shreya, why can't it be replicated and used for other children?”

Children pose for a photograph at Bikham, an art festival for inclusion. Photo: Facebook/DownSyndromeSupportGroupIndia

Pandemic's story

Gradually, she started telling stories when the community she had created through Facebook would meet in groups. But these were just occasional exercises, until COVID struck.

“The pandemic was a game-changer. Every child was at home, every mother was at home. It was hard to do therapies online. But when I started telling stories, children remained before the laptop,” Shivani said.

All of a sudden, mothers and fathers got their 'me time'. “I remember telling parents the first time: 'This is your moment to take some time for yourselves. Take a cup of coffee or tea and leave the room. I don't need you. Even if the child is not listening today, she will in a week's time',” Shivani said.

Many sides of a story

These are Panchatantra-like animal stories that she tells children. Storytelling, like Ravana, is many-headed. 

It is speech therapy; she makes them mimic the sounds of animals. It is movement therapy; she creates moving images of elephants and fishes with her arms and fingers and face and asks the children to follow suit.

It is also a logical thinking session. (“The cat is on the tree and the child is crying. She wants the cat down from the tree to play with her. How do you get the cat down?”)

She realised that children with severe social anxiety felt comfortable, and at home, during story sessions.

Chapati king

Once she told a story about a king who loved chapatis. There was a 24-year-old young adult with autism, non-speaking, who had never taken off his gloves because he had sensory issues. “Touch and feel of things would overstimulate him.” After the end of the story, this autistic young adult took off his gloves and made a 'roti' with the dough given to him.

Nonetheless, it is not as if a story begins and the neuro-divergent child, as if under some magic spell, sits down and listens calmly.

“The biggest challenge is when the child or the person with intellectual disability does not want to sit and listen. And the parents get very agitated after two or three sessions. They say this will not work. I tell them to leave the room, keep the computer on and let the child be,” Shivani said.

She then resumes her telling, her operatic voice scaling dramatic highs and lows. “The child might not be listening but the sound waves are travelling to her ears. In two or three days she can be heard repeating what I had said, mimicking me,” Shivani said.

Death and sea dragon

Her stories address complicated issues like grief and sexual awakening.

A boy who attends her sessions one day lost his uncle he was very fond of. He was deeply distraught. Shivani wanted him to move on in life. So she made up a story of the friendship between a sea dragon and a boy.

One day when the dragon emerged from the sea, there was no boy. The dragon was heartbroken. He came back everyday, and there was no boy. But on the third day, the dragon is met by the boy's sister. A new friendship develops. “He has lost someone close but he is also made to understand the joy of finding a new friend. Life moves on. I am sure the dragon story will find its way to the boy's subconscious,” Shivani said.

Call a spade a spade

Stories about sexuality are graphic, explicit. Neuro-divergent people cannot be told in riddles.

“When I am speaking about masturbation, I will show them the process graphically. Everything has to be shown and explained. It is also important to tell them what happens after. How to clean up and to feel okay. My story will be such that I will not in any way give out the message that it is not right. My goal will only be to put it out there for them, as it is,” she said.

She avoids understatement. “The body parts have to be named as they are, as vagina and penis, because if they are ever sexually abused and if they know only nicknames for their private parts they will never be able to clearly tell anyone what happened to them,” she said.

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