Avnish Tiwari trekked to the Everest base camp with his dad at age seven, became a TEDx speaker, championed the “Save the Tiger” campaign and is now waiting to turn a blogger at 11. He also has Down syndrome, was born with a hole in his heart and was abandoned at an orphanage by his biological parents. But Indore-based software professional Aditya Tiwari chose to adopt him at 28, decided to become “single papa” despite his family’s objections and is preparing Avnish for the Special Olympics.
“This special child is indeed the father of this man talking to you,” says Aditya, who has walked beside his son through every health emergency, not to make him ordinary but to show the world that extraordinary deserves a place at every table.“We talk of inclusiveness but are selective about it. Avnish was born with Down syndrome, a genetic disorder because of an extra chromosome. Does that make the child any less human?” asks Aditya, who fought long court battles to get custody.
“Before me, a man could adopt only at 30. Now any man can do so at 25. A single dad adopting a differently-abled child was unheard of. Today, both of us are a living reality,” he says. His validation as a parent came when Avnish was named the youngest recipient of the Prime Minister’s National Children’s Award in 2024.
“Everybody said I needed to rewire my emotions completely. But I accepted my son as he was. These special children are not abnormal; they just have a different intellectual and physical capacity. If you give them a nurturing environment from the very beginning, then they will be as normal as you want them to be. And they are forever happy,” says Aditya, who insisted that Avnish attend regular school and has reprogrammed his life with more flexible work hours to ensure he is around for medical emergencies. As children born with Down syndrome have congenital defects, Avnish, too, goes through such episodes.
Dr Imran Noorani, child development and mental health specialist at Sir Ganga Ram Hospital, New Delhi, says Down syndrome children do exceptionally well on their development milestones if they are diagnosed early and interventions happen soonest. “Many parents focus so much on the child’s motor functions that they overlook their neuro-development assessment. This involves measuring mental age and cognitive skills. More than 95 per cent of such kids run and walk after two years. Down syndrome children do not just need life skills, they need multidisciplinary therapy to sharpen their brain function.The life expectancy of those living with this condition has increased to 60 years with some even living beyond, given the right environment. Many are pursuing corporate jobs.”
As children born with Down syndrome have congenital defects, Avnish, too, goes through such episodes. (Express Photo)
The early challenge
Avnish was 22 months old when Aditya got him home. “I was told he would not be able to stand on his own feet ever in his life. He had a hole in his heart, suffered constipation because of lower muscle tone that slowed down his gut movement, impaired thyroid function and a low IQ,” says Aditya.
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He could breathe easy when the hole in Avnish’s heart closed after six months, unlike the surgery that most children need. That’s why Aditya ensures that his child is well up on physical activity and eats just right to avoid weight gain. “My child has only home food, no junk or processed foods,” he says. Dr Noorani says diet is a key pillar for those living with Down syndrome because they have low metabolism, need fewer calories and have trouble chewing and swallowing. Low muscle tone means lower activity levels and weight gain. “Food has to be nutrient-dense, soft, high fibre and rich in vitamins, minerals and Omega-3s. No added sugar or saturated fats. A lot of hydration is needed too,” he says.
Dr Noorani recommends tracking a newborn’s development milestones in the first three years. “If the baby has floppy limbs, is not making eye contact or smiling back, has a short neck or a head lag and has slower milestones in sitting, talking, walking, it is time to take action. Delays can affect speech, memory and learning. A neurodevelopmental assessment should be done three months onwards. Early brain plasticity is highest in the first three years of a child’s life. Identifying delays early allows for immediate intervention (speech therapy, occupational therapy, physiotherapy), which dramatically improves outcomes. These children are also creative with a high emotional quotient and empathy; they have a different language of communication,” he says.
Most of the children under Dr Noorani’s care don’t have physical limitations. They play basketball, jump ropes and are even up to speed to follow lessons at regular schools. They just catch up late. Aditya followed such a multi-disciplinary approach and worked with teachers, educators and counsellors at his son’s school. “That helped him with socialisation and expressing himself through words. Listening to him, you wouldn’t know he lives with a condition. The first trainer has to be the parent,” he says.
Avnish was 22 months old when Aditya got him home. (Express Photo)
Of course, Aditya took days to teach Avnish a single alphabet and build his vocabulary. He even chose games and puzzles for him. Children with Down syndrome learn best through play that is visual, hands-on, repetitive, joyful, and success-oriented. This helped him in developing his language, memory, attention, motor skills and confidence. “The other thing I have done is set up a routine, and break it down into small tasks, which seem achievable for him. That gives him confidence to do things independently,” says Aditya.
The challenges of therapies
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Children with Down syndrome often have smaller nasal passages, so even normal-sized adenoids or tissue at the back of the nasal cavity can cause significant blockage. Avnish suffered a bad bout of pneumonia and infections. So, he needed surgery for adenoids. He even needed one for undescended testes (when the testes are not in place). “I had to fight for insurance cover. In India, standard health insurance often excludes Down Syndrome as a congenital condition, but specific treatments (like surgeries for related issues) and therapies (speech, physical) are covered sometimes, especially under the government’s Niramaya Health Insurance Scheme. Still, you have to fight for the complications arising out of the condition and there is a lot of to and fro between doctors and the insurance company. In fact, I had to convince them that the testes surgery was not cosmetic but a medical necessity,” says Aditya.
Preparing for Mt Everest
Avnish loved nature from his childhood, father and son often setting out on drives to farms. He then wanted to experience the hills and having watched a documentary on Mt Everest, wanted to see it. “He has been at the Everest base camp twice, first at age seven and second at nine. It took a year-and-half of training, first acclimatising him for a year at different temperatures and high-altitude conditions as his body could react differently to alien terrain and climatic conditions. I filled up his room with Mt Everest posters and flagged videos of expeditions so that he could sense the challenges. We did this all during the lockdown. Then we spent considerable time in Kashmir and Ladakh,” says Aditya, who also factored in airlift operation in case of a medical emergency.
As Avnish squinted under a glistening sun at the Everest base camp, both father and son felt they had broken every barrier of impossibility. Ever since that moment, they have visited schools, colleges and even participated at the World Economic Forum (WEF) to spread awareness about Down Syndrome and the need to employ people with special needs. Aditya has now formed a support group for parents of children with special needs.
“Just learn and enjoy at the child’s pace and laugh with them. They will be alright,” he adds, holding his son’s hands for a terrace garden at their home.
As children born with Down syndrome have congenital defects, Avnish, too, goes through such episodes. (Express Photo)
Avnish was 22 months old when Aditya got him home. (Express Photo)
