Living with Vir

It was the diagnosis that revealed itself on a nippy January morning of 2008 which suddenly altered the life of a family Gopika Kapoor a mother of twins remembers walking into Umeed Child Development Centre almost confident that one of her kids Vir was dyslexic Instead a few minutes into the appointment with the nonprofits founder developmental paediatrician Dr Vibha Krishnamurthy she heard the word autism There are a few times in my life when I have had an intense sinking feeling like the bottom of my stomach had fallen through my body onto the groundhellip Kapoor writes in her new book Beyond the Blue Notion PressThe book is about this journey of holding it togethermdashlearning unlearning and coming to terms with the reality of raising a child with autism She named it so because blue is the colour associated with autismWhen Vir was diagnosed and I was looking for material to read everything seemed to have been written from a Western perspective which I couldnt relate to entirely The Indian subcontinent is culturally different from the West and it was important to have an Indian context when discussing and understanding autism I found that missing says Kapoor That it took her 12 years to write this book had to do with her struggle to accept herself as an autism mother Writing the book was a process because even reaching a stage of acceptance where I could talk about it took time When I joined as therapist at Umeed I wouldnt tell my patients that I had a kid on the spectrum I just didnt want anyone to know she admits in a telephonic interviewGopika KapoorThe disclosure didnt happen overnight By Kapoors own admission it took years for her family of four to accept and celebrate the difference that united them Her book revisits the many stages of Virs journey who is now 15 and how each member coped through this new normal that became their lifeAs a child Kapoor writes how her son Vir was different from his more outgoing twin sister Gayatri When relatives would comment that Vir was aloof and incoherent or unresponsive to his name being called Kapoor recalls getting defensive While autism is a largely invisible disability this denial she says prevents many parents from noticing red flags and seeking out early intervention She breaks down her own experience after the diagnosis as one of living through the five stages of griefmdasha concept conceived by psychiatrist Elizabeth KublerRossmdashthat begins with denial before it makes way for feelings of anger bargaining sadness and acceptanceTrudging through the grief Kapoor and her husband Mohit cut down on their very active social life to concentrate on Vir I think the bargaining phase was the toughest she says During this time Kapoor recounts experimenting with pastlife therapy for herself and changing Virs food attempting the glutenfree caseinfree GFCF diet which was said to have miraculous results for children with autism but met with little success with her son However it was the Relationship Development Intervention RDI programmemdasha familybased behavioural treatment which addresses the core symptoms of autismmdashthat put a strain on the couples relationship It was not like we experienced any of those phases of grief one after the other Sometimes it all came together Small things would trigger my anger It was very exhaustingLooking back she thinks if she had seen a counsellor she would have been in a better place Later training at Umeed and starting out as junior therapist working with different children helped immensely Its almost as if you are trying to decipher this puzzle and once you crack it you just fall in love with these kids says Kapoor who was with Umeed until January this year and currently consults with families in Mumbai having children with autismHaving said that she says there is no foolproof formula or common line of therapy when dealing with children with special needs Each child is different There are children who will take years to learn one skill and there are those who learn faster They all make progress but the rate at which they make it is very differentWriting this book she says has made me accept Vir even more It has built renewed acceptance and appreciation I do get a little wistful sometimes worrying if he will ever find somebody a life partner But I have learned to have faith in him over time He has done things that I never thought hed do like learn to read walk down the road or even go shopping So I keep pushing him Recently over Diwali when we were in Goa he wanted to go jetskiing We allowed him to We were thrilled that he could do it on his own My son continues to amaze meThe red flagsA child with autism spectrum condition ASC may display the following Not respond to their name by 12 months of age Not point at objects to show interest such as an airplane flying overhead by 14 months Not play pretend games such as pretend to feed a doll by 18 months Avoid eye contact and want to be alone Have trouble understanding other peoples feelings or talking about their own Have delayed speech and language skills Repeat words or phrases over Get upset by minor changes Have obsessive interests Flap their hands rock their bodies or spin in circles exhibiting unusual reactions to the noises or smells around themCourtesy Beyond the Blue Gopika KapoorKeep scrolling to read more newsCatch up on all the latest Mumbai news crime news current affairs and a complete guide from food to things to do and events across Mumbai Also download the new midday Android and iOS apps to get latest updates MidDay is now on Telegram Click here to join our channel middayinfomedialtd and stay updated with the latest news