Posted by Elizabeth Kurian – Joseph, Goa
Born in 1996, Ashwin was an angelic looking child who went on to win many healthy baby contests. He started speaking single words in a year and all his physical development seemed normal. But after 4 years when Ashwin went to school, he seemed to be “different”. Soon he was diagnosed to have a “language development delay” with ADHD, and a year later with mild Autism Spectrum Disorder.
He went to an inclusive education set-up in a regular school. Since he wasn’t coping with academic skills, I started focusing on his abilities rather than the disabilities. The focus was on pre-vocational skills along with communication and other goals so that he would be meaningfully occupied. He had reached a stage that he could travel in a school bus with peers in-charge, and we as family could do some social outings together. I even went on a 15 day solo holiday – which felt like a huge accomplishment.
Then came adolescence – a tough time for all teenagers. But for children with autism, it is a double whammy. They don’t know what is happening with their bodies and they can’t express it. When Ashwin hit puberty, our world came tumbling down. Around 2012, it was as if a storm had hit and there was no respite for over a year. With extreme behavioural issues, the whole family was affected – specially my little daughter. Our lockdown experience had started, albeit not driven by a virus.
Ashwin used to have about 30 – 40 spells of meltdowns daily – which involved screaming, running around, self injurious behaviour, hitting others (including my daughter). It would just spring out of the blue with no prior trigger. Some would last 5 minutes and others up to half an hour. But post that he would be calm as ever. So we were on pins always and didn’t know how to deal with this. Any response in the form of anger or noise would trigger the meltdown further. We had to leave him in his room to calm down on his own. We couldn’t go out anywhere with him. A person had to stay back home and that was usually me. So we didn’t attend any social functions together as a family nor did any outings. For my daughter’s activities, it was either me or my husband who had to take over. We couldn’t have guests at home, even for short visits. And we felt totally distanced from society.
Our family continued in this social lockdown pretty much for 3 years. There was also a short phase of wanderings and that was the scariest. We decided to put him on medication. This required a blood test. It took us 3 months to gather the courage to go for the test. As it is, I had no skin left on the back of my palm with his clawing. This visually played on my mind while I took him to the hospital. Eight people were there ready to pin him down on the bed, in case he became aggressive. But none of that happened. He smiled and took the prick, after which he got his chocolate as a reward. The scars on my hand still remain as a reminder of the tough times of that lockdown.
Later with medication, he started settling down. He went to a vocational centre where he made products as per his skills. Meanwhile at home, he started to contribute to quite a few chores that include complete laundry, few kitchen tasks, garden jobs, etc. All these were taught with aids (physical & visual) each step at a time. As mothers, we often give up our careers. I decided to set up my architectural practice at home. It worked well for me. I could do my work and have my “me-time” when the children were at school.
And as life seemed going on well, Lockdown 2020 happened…
The first week went about figuring out how to manage activities and time meaningfully. Scheduling and structuring everything for my son has always been done diligently. It was natural to follow the same idea and tweak it for the lockdown.
We need to stay healthy and fit – physically and mentally, not only the person with special needs, but the family as a whole. If the the primary caregiver (me for Ashwin) i.e. the engine is fine, the wheels can move smoothly. So, when the 21 day national lockdown was announced, we realised that we had to prepare for the long haul. I charted out a plan – structure the day with activities and make use of resources we have in the best possible way.
Now with the lockdown extended, the aim is to teach Ashwin basic cooking using visual recipes and gadgets. For this, he needs to be taught a subset of skills like measuring, etc. We are working on it and hopefully, this will be a step towards his independence.
Dividing and delegating chores amongst ourselves makes it easy for all. The biggest surprise is Ashwin – always in a good mood and never a whimper from him. They say it takes 21 days to form a habit. I taught him to wash his own plate. And after 3 weeks, he does it himself after every meal, without any prompt. The focus is also to convert his embroidery and thread work into products that would be viable in today’s market – thereby create a brand for him.
It’s the end of Lockdown 4.0 and Goa is ready to open up. We stayed home all summer and kept the coronavirus at bay from our community in Goa. We don’t know what the future will be, but we now know we have to live with the virus. The summer holidays are over and we have missed the travels and the outings to the beach.
But that’s fine – we have survived the lockdown till date, and most importantly remained healthy. We have the freedom to walk in our neighbourhood and have learnt to use the mask. People have adapted to a new normal – which is generally difficult for persons with autism. My son has been in the best of moods – always smiling and happy that he gets four meals a day. And he has been doing all work entrusted to him with no complaints. So much to learn from him – his silence speaks all and has redefined the meaning of “being content” for us.
Yes, life is a roller coaster ride. And the ride continues… And in this journey, we must remember, there is a silver lining to every dark cloud.
Cover image : Stock photo
Story images : Author
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