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“They call me ‘boss’ at home! I want to be a soldier when I grow up”

When Shreya Dhillon (15) from Chandigarh engages in mock swordfights with her elder brother Aviraj (18), she is training to protect everyone around her: Aviraj, younger sister Noor (11), parents Ajay Pratap (48) and Shivani (46) – in fact, her entire extended family and whoever else she brings within the fold of her all-pervading love. Her sizeable collection of action figures shows evidence of her fascination for superheroes. And when we ask her whether her mother is also a superhero she cries out a resounding “Ye-e-es!”
 
The Dhillon family finds a semi-fictional representation in the 2023 work of Archana Mohan, “Extra! (Extra Chromosome, Extraordinary Love)”. Mentored by Shivani, Archana gives a grounded approach to the realities of children with Down Syndrome, even as she spins a marvellous children’s adventure story. It was in 2011 that Shivani received a word of caution from doctors that her second child might have Down Syndrome. Although she was unfazed by the news at the time, it was only after Shreya’s birth that the reality of her condition hit home. However, the initial shock subsided and Shivani realised what had happened was not a burden but a blessing. It set her on a journey to understand what it means to love selflessly and unconditionally – and Shreya taught her this.
 
The Dhillons moved back from London, where Shivani was a journalist at the BBC, mainly because of the isolated living conditions they had experienced. Shivani recounts how in India, her extended family has come to their aid in innumerable ways. Shreya went to a mainstream school until she was 10 and was seen as a “problem child” because, as her mother points out, mainstream schools are not equipped to, and are generally unwilling to, handle the special needs of neurodivergent children. Shreya was removed from school and stayed home during Covid. Shivani started an initiative called Rangdhaara a few months ago which, in collaboration with Discover Ability school, provides much-needed skills training for young adults with disabilities, an inclusive space geared towards income generation and independent living. Shreya spends her mornings there.
 
Nothing comes between Shreya and her morning cup of tea. After playing for a while with their eight-month-old dog Coco she gets ready to go to Rangdhaara. She’s there from 9.30 a.m. to1.30 p.m. after which she comes home for lunch. A gastronome, she likes chattering away with Didi (which means big sister), their domestic help, and usually calls the shots when it comes to deciding the menu, which is why her siblings call her “boss”. If she’s in a good mood she helps with a few odd chores. Ajay, whose job in the US health care market keeps him working through the night, wakes up in the afternoon and gets a hot cuppa from Shreya’s hands.
 
“Shreya has a superb sense of humour; she cracks jokes and can pull your leg,” says Shivani. “Her laughter is infectious; it lights up our home. She is the glue that sticks us together.” Her pastimes depend on her mood: she might paint, or play her favourite game of carrom, or simply dance – or make her action figures dance – to songs on TV. She admires her grandfather, who retired as a general in the Indian army, and says she wants to be a soldier like him. She loves to travel; she simply blossoms and shows a new side to her each time they go on a trip, says Shivani. When the family went on a holiday to England in 2024 Shreya noticed the way the English pronounced her father’s name and she started calling him “A-jay” in an English accent, comically stretching out the ‘A’!
 
Noor is in Grade 5 and Aviraj studies in Grade 12 at the Mahindra United World College in Pune. Shivani, a therapeutic storyteller and the co-founder of the Smiling Dandelion Foundation, says it is absolutely essential for mothers of children with disabilities to have some time for themselves. “There are moments of pain, moments of frustration, when you are overwhelmed by a lot of things. You just have to step away for a while, just so that you can regain yourself, and for this, the support of your family is integral.” She says she has at least 10 people who could come in the middle of the night for any form of emergency. “It takes a village to raise a child, all the more in the case of a special child”, she says.