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Sensory overload and a lack of routine during COVID-19 makes life an uncharted minefield for children with autism. Here’s how 4 moms and a special needs educator feel their challenges can be handled.
While the Covid-19 pandemic has brought its set of challenges for everyone, things have been especially hard for children with autism and their families.
These past months have been an uphill climb for these children and their caregivers, thanks to the carefully planned routines that have been tossed out of the window and the overstimulation they face because of the increased hand washing and the need to wear masks. We spoke to a few families of children with autism and an educator on how they have been coping with this new normal.
Shalu Sharma. Mom to 5 y.o. twin girls, one on the autism spectrum
“There is only so much a parent can accomplish by themselves. Sometimes it is better to let a therapist, a development pediatrician, or an expert take over.”
Shalu Sharma has been braving the lockdown with her five-year old twin girls Saisha and Shriya in Gurgaon. Shriya is on the autism spectrum and Shalu describes how the change in routine affected the family.
“The initial few weeks were particularly difficult for Shriya when we had no choice but to stay at home. Just like most people on the spectrum, she thrives on a schedule, a predictable and clear understanding of how she will spend her day and a timetable. And I too, failed to realize why she was being irritated those initial few weeks. We live alone, without any other adult with us, and I had to spend my day working from home, so I couldn’t stay on top of the things needed for her schedules.
Once I realized this, I started to spend my Sundays to make a weekly plan for her. She is good with technology and can access her iPad with ease. Daily alarms with labels helped her to see a clear plan and look forward to those activities – whether it be colouring time, reading corner time, screen time, or mealtime. This ensured that her anxieties related to uncertainty were at bay.”
Though a period of massive change, Shalu explains how they were able to use Shriya’s compulsive behaviour to the family’s advantage. “Shriya has always been very particular about her hand hygiene, and that came handy during the time of the pandemic. I made her in charge of ensuring that not just she, but her sister also follows a good hand hygiene practice, and half of my job was done.”
As the whole world holds its breath wondering what life will look like in the long term, Shalu says she prefers to take each challenge as it comes.
“I honestly do not have a long term plan in place, as I know the plan we are currently following is working for us.”
Despite that she says she worries about the twins academic learning.
“I am not able to devote as much time as I would like academically, and these being their formative years, and schools too are struggling to deliver to the different learning needs for kids that young. But I guess, just like we got used to the new way of living, once things are back to normal we will figure that out too. Although this has been one of the worst global adversities, we have learned a lot from the pandemic situation as well. So, maybe once things are back to normal, we will all emerge with something totally new and better!“
Shalu says that she learnt two things from her experience of being a parent to a child on the spectrum. “One – each kid on the spectrum is different and two – they don’t always communicate with their words, even in case of verbal kids. Listening to their actions, their individual needs will help us to come up with personalized and unique solutions for them. And I am always a big advocate of seeking professional help. There is only so much that parents can accomplish by themselves. Sometimes it is better to let a therapist, a developmental pediatrician, or an expert take over.”
Kreeti Mitra Bhatia. Mom to a 10 y.o. son and founder of The Special Mom
“Stay in touch with the parent community, a listening ear is all it takes sometimes to find our inner mojo.”
Kreeti Mitra Bhatia is the founder of The Special Mom, a community that she created to support parents with special needs children. Her ten-year-old son Arnav is on the spectrum and she explains that grappling with these unprecedented changes has been a mixed bag.
“We are seeing a lot of rage and aggression to settle down with this new normal. His entire life has been disrupted. We tried online sessions for him with his favourite teachers and that failed to give him any excitement. One positive that we saw is that he has started to understand his emotions better- if he is angry then he tries very hard to understand how he is feeling and how the anger is manifesting physically. As far as mask wearing is concerned, we failed. He could only tolerate the mask for around 10 seconds because of sensory issues. Hand washing is a definite favorite activity, as he loves to play with water.
Kreeti says she is coping by tackling one thing at a time.
“I try to help him as much as I can with my understanding and capability as a parent. I see a few positive things happening. Most of the times it is a struggle to keep my calm and not to feel overwhelmed. I am also learning a lot about myself.’
As someone with access to a large community of special needs families through The Special Mom, Kreeti has these tips to share.
“Do start work on their emotional regulation and a strict home schedule (especially a visual schedule) and ask educators, and fellow parents for help in creating an effective plan. This is what will help the child grapple with the new reality. Everything else will fall into place automatically. And stay in touch with the parent community, a listening ear is all it takes sometimes to find our inner mojo.”
Suneeta Naik. Mom to 11 y.o. son with autism
“We all know life is not fair but for parents with special needs kids, it is way harder.”
Suneeta Naik’s eleven-year-old son Kabir struggles with verbal communication and socialization.
“His school brought him the structure and support he needs in social settings. We had a therapist help him at school to learn social interaction. Playing on swings and slides along with his peers was something he really enjoyed and he was learning to use his words to interact with them. All of this has suddenly stopped and created a vacuum in his daily routine,” Suneeta says.
Yet, to the family’s surprise Kabir has taken the coronavirus related restrictions quite well.
“We made sure to go over the topic of coronavirus everyday. We used pictures to show him that it affects our health and we can’t go out like we used to. We showed him a lot of Youtube videos on how people are wearing masks. This prepared him to stay at home more and wear a mask when we go out. Although keeping it on is a challenge for him. Due to the sensory overload he is not able to keep it on for a long time. Though he will happily wear it for short trips outside.
My son loves water, so hand washing has become a game in our family that involves a lot of singing and tickling to make it fun.
Though Kabir adapted to the challenges fairly quickly, Suneeta remains worried about the path ahead.
“We really want to start therapy again but given the current situation we can’t. Wearing a mask for a long time is just not going to work. This might set his goals back. It takes a lot of work to teach a new skill. Without consistent practice it makes it harder to sustain. Our kids need a lot more physical feedback for sensory and motor functions to work well. As parents we are trying hard to create fun activities like bike riding or sand play at home.
Our kids cannot communicate their feelings well, but as parents we can clearly see that they are frustrated. He is not able to communicate with his friends over zoom like my NT (Neurotypical) daughter.”
The amount of effort that goes into making things function as effectively as possible has taken a toll on Suneeta too.
“I have no other option but to reduce my work to part time. I am lucky to have an employer who understands the situation and is ready to work it out. But with no end in sight to this pandemic many families like ours might have to make compromises and one parent might have to quit working to be able to handle the schooling, therapies and daily household chores themselves. We all know life is not fair but for parents with special needs kids, it is way harder.”
Suneeta recommends involving your child in everything.
“Explain to the situation to them. Even if the child is severely autistic or non-verbal, they deserve to be told why there is such a big change in their routine. Use a book or a video or pictures or simply monologue but do keep lines of communication open. They understand way more than we think.”
She also asks parents to focus on life skills.
“Never before have we had this much time at home together, so slow down and focus on independent daily living skills. Use this time to teach how to make their bed every morning, get ready by themselves, help in cooking, laundry, cleaning…. all these skills are far more important and useful than we pay attention to. It might take them 30 minutes initially but time is all we have got, isn’t it?”
Lastly Suneeta advices fellow parents to have fun and to go back to basic sensory play.
“Teach everything using kinesthetic learning – by involving all the senses when teaching, playing or reading.”
She stays positive saying, ‘I think this could be a blessing in disguise where we can go back to developing our relationship with our kids. As long as we keep them happy, safe and engaged everything will be all right. “
Anshul Jayant Batra. Mom to 13 y.o. boy
“Only a vaccine will make it possible for our children to get used to a normal environment and regain access to all the social activities they had before Covid-19 hit the world.”
Anshul Jayant Batra is a special educator and a mother to a thirteen-year-old boy Ansh Batra. Ansh is partially verbal but is an up and coming artist who has sold more than 200 pieces of art across the world.
“Ansh was attending school from Monday to Friday and he used to have his physical classes at home four times a week. He also used to learn art from an artist on weekends. He was also going to an organization for learning independent skills without his parents on weekends. He was pretty busy and organized in his daily routine, but due to Covid-19 he is at home since March’ says Anshul.
“Earlier we used to go out for different activities but since the lockdown physical activities have been put on hold, which I personally feel is very important for our children. Now my son spends more time at home looking at the TV or the phone,” Anshul worries.
Anshul says there is no scope for creating a long-term plan for what happens next till a vaccine enters the market. “As a mother I feel that only a vaccine will make it possible for our children to get used to a normal environment and regain access to all the social activities they had before Covid-19 hit the world.”
Though Anshul worried about how her son would react to wearing masks, she says he adapted well to it. She refuses to think about unlearning the newly learned behaviours during the pandemic.
“You have to go easy since it is a long battle. Take one battle at a time. Wearing a mask and frequent hand washing are the priorities right now. Just work on these skills and the rest can wait.”
Aiswarya Liz Varghese. Special educator & Counsellor to children with autism
“Right now it is difficult to engage them during my online therapy sessions and it is frustrating to me as a human (and not a professional) when I am being empathetic about their situation as well as their parents”
Aiswarya Liz Varghese teaches Speech Language Pathology (SLP) at
Kasturba Medical College in Mangalore. She also gives counseling and guidance to parents of children with autism with respect to their speech and language disabilities that she explains is a major part of their disability.
“The main characteristic feature of children with autism is their limited social skills and from the intervention or treatment point of view, they are encouraged to expose themselves to a lot of social activities to overcome their disability. This aspect is compromised during the global Covid situation and is having a direct impact on these children. Some react to these changes by becoming extremely hyperactive and not being complacent to the hand hygiene requirements or wearing masks and social distancing norms of Covid protocol guidelines. Some also exhibit major temper tantrums and have meltdowns which at times are uncontrollable by parents,” Aishwarya says.
While she is poised to help, the current situation makes it hard for Aishwarya to do so.
Aishwarya has these words of hope to the families of children with autism.
“Do hang in there and do not lose hope as all of us are going through unprecedented times.
I would also ask the parents to change their approach in dealing with things. It would also help to experiment with newer ways of looking at their professional and parental capabilities with children with autism by reading up on the latest evidence based practices in the field and updating their knowledge skill set.”
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Shweta Ganesh Kumar is a Novelist, Award-winning Blogger and Founder-Editor of The Times
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