At the start of every new year, my husband and I would set some common goals for the family.
Unlike resolutions which can feel big and often fade as the year progresses, goals seem more achievable and set the tone and intention for the plans we intend to carry out throughout the year.
This year was no different. For the first time in many years, our focus was not on Aydan Ziqry, 9, our eldest who is on the spectrum and in Primary 2 at Pathlight School.
Instead we wanted to pay more attention on Aadil Haris who is in Kindergarten 2 and our baby girl, due to arrive in February.
Then, COVID-19 happened.
AN INCONVENIENT TRUTH
I was about three weeks away from my estimated date of delivery when the first case was confirmed in Singapore.
From then on, instead of arriving just in time for our appointments, we had to give a buffer of at least half an hour to accommodate the temperature checks and filling in declaration forms before we could enter the maternity clinic.
It was an inconvenience, nothing more.
When our nation’s Disease Outbreak Response System Condition (DORSCON) level was raised from yellow to orange, the hospital informed us that visitors were not allowed at the maternity wards.
Unlike Aydan and Aadil, Amelie Sofia Hannah’s birth was a very quiet affair at the hospital.
It was also the most restful hospital stay I had.
THE START OF OUR BREAK
To contain the spread of COVID-19 in Singapore, Prime Minister Lee Hsien Loong announced a nationwide partial lockdown known as a circuit breaker in April. Instead of just lasting for three weeks, it was extended to 1 June.
Throughout this period only essential workplaces were opened while non-essential services were limited. Schools, places of worship, recreation centres and attractions remained closed. Social gatherings such as private parties and get-togethers with friends and family not within the same household were prohibited, wearing of masks was compulsory and safe management measures were put in place in premises that were operational.
I quickly realised my maternity leave would no longer be just about staying home to recuperate and spending time with the baby.
Instead, it would be about starting new routines.
OUR NEW ROUTINES
My mornings of blissful solitude with Amelie ended abruptly as we prepared for the older boys to stay home. We created spaces to accommodate learning and working from home.
Schools transitioned to home-based learning (HBL) from 8 April.
Prior to that, Pathlight had already prepared its students for HBL with verbal and visual reminders on the changes to expect. Teachers shared the various strategies on managing the academic load. Parents were expected to guide their children and ensure work is submitted daily on these online platforms.
To prepare the boys, I created a new timetable which included ‘Homeschool with Ibu’ (the term we used for HBL at home) in the morning. We printed this main schedule and pasted it in the living room, a space where Aydan spends the most time at. Days leading up to HBL, we would often make him refer to the schedule and quiz him about ‘homeschool’.
Aydan’s teachers shared with us some visual cues, like the ones in class, to remind him of appropriate behaviours during learning.
Even with all the verbal and visual reminders, Aydan remained unsettled and anxious.
Aadil, on the other hand, was excited as he imagined fun days ahead of staying home.
The first week was a complete nightmare.
Although we had prepped Aydan about the changes in routine, I did not anticipate the amount of planning that was required before the start of every lesson.
Pathlight provides a unique blend of mainstream academic lessons and life readiness skills for students on the autism spectrum and related conditions. All lessons are taught using autism-friendly pedagogy.
Aydan is in a class of six children to three teachers. He is in the category of students that require a lot more support and attention.
For students like Aydan with socialisation deficits, Pathlight provides them scaffolded and guided practice in interact- ing with peers, learning to identify and manage emotions, playing collaboratively and sharing resources.
It was only during HBL that I fully understood the amount of scaffolding required to make him understand a new concept or revise an old one. I had to re-learn all the mathematical concepts and language rules and guide Aydan in a way that he could understand.
Aydan needed to be regularly redirected to the task at hand and reminded to stay calm as he did his work. Often, our lessons would be disrupted by his stimming – he would often break out in ‘scripting’ which is the repetition of phrases or sounds of the speech of others usually taken from movies or taken from something someone else has said. We call this his ‘TV talk’.
His stimming usually happens when he gets tired or anxious. Sometimes, schoolwork can be rather overwhelming, causing Aydan much distress. On those days, Aydan’s mood would escalate quickly into a meltdown which was not only loud but can be rather violent.
To manage his anxiety, I printed a breakdown of his tasks so that he can check off the things he had completed. We also used a kitchen timer for him to manage his time better.
Right after that first week, I realised there was no way Aydan could complete his daily HBL independently. It would also be impossible to manage both Aydan and Aadil’s HBL together.
Aydan’s stimming was too loud and disruptive for Aadil, whose HBL consisted of daily Zoom sessions with his teachers and classmates. His frustrated cries and violent outbursts affected both Aadil and Amelie.
Thus, over the weeks, I adjusted the original schedule and academically, things got better, which helped diminish Aydan’s aggression and anxiety.
I relied on my helper to care for Amelie in the mornings and completed Aadil’s HBL first before starting on Aydan’s. By then, Aadil finally realised that ‘Homeschool with Ibu’ was more tiring, because everything at home presents a learning opportunity to spell and count.
Then, there was the cabin fever.
THE CALM BEFORE THE STORM
Although we live on our own, our home is constantly filled with family and friends every weekend. We would host regular makan sessions or schedule playdates with friends who have children. And like any family with a newborn, family and friends were even more excited to visit.
In tandem with the circuit breaker, a new law – the COVID-19 (Temporary Measures) Act 2020 – was passed in Parliament on 7 April. This new law bans all gatherings at home, public spaces (like HDB void decks and parks) with family or friends who do not live together.
Thus, when Singapore went into circuit breaker mode, we had to put a stop to all the boys’ enrichment classes and therapy sessions. Playing outdoors was out of the question. Family and friends stopped visiting too.
I researched online materials that could explain what this virus was about and why the safest place to be is home. We conducted and recorded experiments, read articles, and watched the news. We showed the boys videos on safety management measures and wore our masks at home, just so they could get used to it when and if they are out.
Although the boys understood the severity of this virus, they could not accept the changes that had to be made.
Earlier in the year, Aydan had planned when he wanted certain things to happen – baby being home in February, Ramadan in April, celebrate Eid with family in May and no Pathlight in June. He made requests to take the airplane and go on a cruise ship during the mid-year school holidays too.
His wish list is still on our 2020 calendar.
Unfortunately, being cooped up at home 24/7 became overwhelming for the children, especially Aydan. Without the reliability of a routine coupled with unmet demands, Aydan started showing regressive behaviours.
Instead of using words to convey his frustrations, he hit himself repeatedly on the face. At times, he would bite into his toy cars and iPad. His teeth hurt and the iPad screen cracked, which worsened the meltdowns.
On 19 April, McDonald’s announced that it would suspend all its restaurant operations in Singapore, including delivery and drive-through services, after several employees tested positive for COVID-19.
This was the straw that broke the camel’s back.
THE DANGLING CARROT
Motivating Aydan is an essential but difficult challenge. He has a restricted repertoire of interest and skills.
While most children his age would have progressed to competitive sports or movies on superheroes, Aydan still watches cartoons and only buys toys from the Disney Pixar Cars collection. In fact, wherever he goes, Aydan will bring along his Pocoyo doll, a cartoon character which he started watching when he was one.
One of Aydan’s main incentives are fries and chicken nuggets from McDonald’s. This has not changed since he was three.
His other regular incentives – outdoor play and visits to his favourite places – had to be stopped by then. Thus, we had to quickly get creative.
We broke the news to him and presented our options. Aydan immediately rejected some of our suggestions. With no incentives in sight, it got very challenging to motivate him to do things or to make him recover from meltdowns quickly.
OUR NEW NORMAL
The COVID-19 pandemic has disrupted daily life for most people around the world. However, it has completely upended it for people with autism and their families.
For parents of children with special needs like us, who often carry an extra heavy load in the best of times, the burden while on the circuit breaker is intensified when our vital support structures typically available are not accessible, and interaction with family and friends is not possible.
While it has been mostly challenging for us, there have also been blessings.
The circuit breaker has given me the time to pause, reflect, press the reset button and make changes to better our family.
I was a TV producer and director for 15 years before I decided to make a career switch. To honour my years of working experience I decided to start our family’s YouTube channel.
Not only does this fulfill Aadil’s aspiration to be a YouTuber, it has also created a new way for us to connect as a family.
After my maternity leave, I transitioned into working from home. Mothers who nurse would understand when I say I truly appreciate the time I get to spend with Amelie.
I have always prided myself on knowing my children’s quirks. But the time spent with them during this circuit breaker gave me fresh insights. I now understand their learning styles and have a deeper appreciation for their teachers.
This circuit breaker has also made me realise how much they have grown. They are highly perceptive and have a large dose of empathy. Upon realising this, I am now more self-aware of how my actions and emotions can affect them. It has made me a better parent and a more supportive partner.
While the COVID-19 situation has been under control, resulting in the easing of several measures and the progressive opening of the economy, the threat of this virus is real and there is always the likelihood of a second wave.
The initial weeks of the circuit breaker have caused tears and frustration for us, but they have also brought unexpected joys and triumphs as we learnt how resilient and capable our children can be. ⬛
Julianawarti Jumali is a mother to two boys and a baby girl. She chronicles her family’s autism journey and adventures on Instagram (@juliana_j) and YouTube (http://youtube.com/wearetheasquad). Professionally, she is a Principal Consultant at Ong Teng Cheong Labour Leadership Institute, National Trades Union Congress (NTUC).