07 Apr 2021  |   04:10am IST

A special kind of awareness with a smile

The month of April is celebrated as Autism Awareness Month, honouring people on the autism spectrum, their families and other community members who work to make this disability understood and promote a more kind and inclusive society. Challenging as this lifelong disability is for a child who is born with it, it is perhaps just as frustrating, stressful and oftentimes completely debilitating for a parent, raising an autistic child. Elizabeth Kurian - architect and mother to 25 year old Ashwin who is autistic, is a stellar example of resilience through her relentless and dogged determination in trying to make Ashwin independent. While most of us celebrate the achievements of neurotypical children, Elizabeth demonstrates how every small win in the everyday life of an autistic child is worthy of being celebrated
A special kind of awareness with a smile

Elizabeth’s perennial smiling face often belies the struggles, pain and depression she went through in her life journey as a mother. Raising an autistic child can be demanding and the commitment to not lose hope, draining. Her many interests - travel, trekking, cooking to her fetish for handloom sarees and resolve to continue her architecture practise from home, may have been necessary to keep her sense of self alive, yet one can’t but marvel at all that she purposefully achieves. “I don’t know if I would have been a career person if it wasn’t for this situation that pushed me to carve out my ‘me time’. Mothers usually don’t think of themselves at all and most give up their careers in taking care of their families. Pursuing my hobbies and career despite the odds is what helps me find my balance,” says Elizabeth. How immensely laudable this achievement is, comes from understanding what goes on in the life of a parent with an autistic child. 

“Ashwin was diagnosed to have a language development delay and ADHD (Attention Deficit Hyperactivity Disorder) at the age of four. A year later it was diagnosed as Mild Autism Spectrum Disorder. “It was a relentless effort to come to terms with the new challenges that spring up every minute especially in terms of behavioural issues. We never went out as a family for any social functions. I had to be home with Ashwin. When well wishers say, “Take each day as it comes”; as a parent of a child with autism, one has to be prepared to “take each minute as it comes,” Elizabeth recalls. Ashwin’s tryst with an inclusive set up in a regular school till the age of 15, didn’t do much for his academic skills but definitely helped his socialisation skills. Elizabeth continues, “There were a lot of anxiety and behavioural issues that came up which proved challenging. I then began to focus on his ‘abilities’ rather than ‘disabilities’. He didn’t have any genius traits as is shown in movies like ‘Rainman’. That is true for 1 in 100 kids and it can get frustrating especially when your hopes are pinned high to find that one special talent.” 

But what Elizabeth focused on was to get Ashwin to be independent. She adds, “I have trained him over time to do multiple chores around the house. He does the laundry, cleaning, peeling, grating and slicing vegetables in the kitchen and a bit of gardening, including growing microgreens - all taught to him through visual and physical aids. A lot of parents are reluctant to push their kids to their potential but I think it is essential to keep trying and pushing to discover what’s possible.” 

Small, everyday wins strung together define Elizabeth’s journey. Coping with the turbulent adolescent period with spells of meltdowns and severe behavioural issues that are associated with autism, Elizabeth always tried to “work around situations”. “My motto is if the mother is happy, the family is happy,” she quips with a smile. Her positivity helped her and Ashwin tide over the difficult period of lockdown during the first phase of the Covid pandemic. Making most of the time they had together, sticking to a routine that Ashwin was accustomed to, Elizabeth went a step further when she realised that Covid wasn’t ready to leave in a hurry. 

She taught him to do embroidery on mats and threading beads. While the designing was done by her, he did the work. Pushing yet again, she decided to make interesting products of this handiwork. Necklaces, trays, coasters, table mats and runners; all created and marketed under the ‘Ash-Win’ label. “This was so unexpected - sitting at home, making these products and connecting with people across India. Being a social person, I was able to connect with friends and friends of friends via our facebook page. For my daughter and I, the big high point was selling nearly 300 products online during this time,” she regales. Another big thrill though was to have Ashwin pay for a family meal at a restaurant, from the money made by him. “Being a foodie, he associates money and food so while he may not have the verbal communication to express himself, he has a wallet full of money earned through his hard work,” shares Elizabeth. 

Marking not just Ashwin’s progress but also her own by the hobbies she continues to pursue, Elizabeth counts her solo trip abroad for 15 days, weaning away from Ashwin and leaving the family in charge, as her hard won accomplishment. She is also part of several parent support groups, eager to share her experience. On a basic level, she hopes society will be more inclusive and sensitised to autistic people. “Autism can take a toll on parents and there are many single parents struggling with multiple challenges. Acceptance of our kids is what we are looking for. For one, stop staring at them and be a little more sensitised.” She pointedly adds, “Mothers feel so judged all the time when behavioural issues are not because of bad parenting at all.” 

As someone who has learnt to clutch on the faintest glimmer of hope, her joie de vivre is evident when she says, “I choose to look at what’s possible and not get bogged down by what’s not.” A life lesson, we can all attempt to learn.

 

 



 

IDhar UDHAR

IDHAR UDHAR