Fragile X Syndrome is a genetic condition that many continue to remain unaware of despite the number of children affected by it in the country. As a mother of a child diagnosed with Fragile X Syndrome, I found it necessary to educate myself and parents like me about the syndrome and how to address the developmental problems appropriately. The genetic condition that affects a range of developmental issues like learning difficulties, behavioural challenges, and health affects nearly 200,000 to 400,000 children in India but continues to remain undiagnosed or even misdiagnosed. My son Varun, too, was diagnosed with autism until the age of 11, after which we came to know that he had Fragile X syndrome.
Toward Opening First Ever Clinic In The Country
I have been a special educator since 1996 and as a parent of a 22-year-old neurodiverse individual, I have constantly been learning and understanding the needs and capacities of differently-abled people. Based on my understanding, the primary reason why Fragile X syndrome largely continues to remain undiagnosed in the country is because of the taboo that comes along with genetic conditions. Many parents, especially mothers (who are often unfairly blamed for their child's condition), are held back from addressing their child's needs due to the taboo. I have helped many parents come out of this shell by sharing my personal experience raising Varun and inculcating a positive attitude about their capabilities. Children with special needs just need to be understood, and they can become self-reliant and contributing members of society just like everyone else.
My family has been supportive of the journey, and together we have been able to build awareness about Fragile X syndrome in the country. It is also required to reach out to parents as the condition can also affect parents with premutation conditions in older age, who are known to be able to develop seizures similar to Parkinson's disease. This also makes it important to break past the gender bias that comes along with disorders because Fragile X syndrome is such that it can be passed from both male and female carriers.
Over time as parents of a neurodiverse child, we wanted to be able to do a lot more than build awareness. My husband, Naren, and I then funded a doctor to go abroad and get trained to be better equipped to help children and parents with the syndrome. We then went on to open the first-ever clinic in India for Fragile X syndrome. Throughout the journey, we took equal responsibility and tried to mould a better space for our child. But unfortunately, that is not the case in most households, where fathers are known to have abandoned children because of their challenges. Families must understand that a child is a collective responsibility, not just the mother's. Even though mothers are traditionally associated as the primary caregiver, handling the child's responsibility should be on equal grounds.
Education Tailored To Suit
In India, yet another challenge that I observed is the age-old technique of teaching a fish to fly. We tend to give a lot of importance to academics, and most children are forced into the rat race as parents thrust their expectations upon them. I firmly believe that parents should not compare their children with others as each child moves at their own pace. They are capable of many things, and forcing them to meet the unrealistic benchmarks we set shouldnt be the norm.
Naren and I had decided to take a different path for Varun, so we drifted away from the traditional academic approach and focussed on enhancing his skill-based activities. We tried to identify his personal interests and helped him grow those interests. Varun has always shown an inclination for baking and doodling, and we attempted to bring the necessary tools to him to enhance these interests. Today Varun is a successful entrepreneur who bakes and doodles and also teaches others to develop their interest in art. Varun launched his very first brand, "Varun's Delight" in 2014, and he has been getting orders for his baking gig from various crowds. He has translated his passion into baking classes taken for people through zoom sessions.
He also took ahead his doodling skills and created a second brand known as "Varun's Creation," where he sells products based on his designs, along with picking up caricature gigs. Every product that Varun sends across also carries a small note on Fragile X Syndrome, which helps build awareness regarding the neurodiverse condition. Through the small note, he hopes to have people embrace the diversity, the differences of each individual, and their strengths.
Today through Varun and his entrepreneurial successes, I take the message regarding the capacities of differently-abled children to many parents. Varun himself has taken many sessions and helped hundreds of employees at Shell, Accenture, Wipro, PwC, and HCL. He has been teaching them to doodle and create caricatures in the simplest and most fun ways possible and help them learn about neurodiversity. Through his many initiatives, Varun earned lakhs in income, which I look up to as a sign that, finally, the world is ready to put skills before disabilities.
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