When a man is climbing a mountain with a load on his back, the last thing he wants is for the load to suddenly get heavier. When the COVID-19 circuit breaker hit in 2020 affecting what was termed "non-essential" services, apart from the loss of social interactions at school that special needs children needed very much, the load also increased with the loss of physiotherapy, speech therapy, occupational therapy and other support services.
The lesser-seen effects
Children of differing abilities had to switch to home-based learning due to the circuit breaker. For obvious reasons, this led to the chaotic disruption of a carefully orchestrated support structure. For some children, this meant a total loss of support services as the parents needed to work full time.
My first thoughts were that the decision would be calibrated and services for special needs children would be considered as more essential than sports therapy and stroke therapy. I was stumped however, when I discovered there were seemingly no specific considerations for this part of the community, and that the disruptions would ripple through the gamut of support services from those common recognisable services to lesser-known sessions of applied behaviour analysis, relationship development intervention and neurofeedback. As a fellow healthcare professional who understood the critical nature of the restrictions, I concluded that the decision makers had inadequate capacity to ponder the impact these restrictions would have.
I was acutely aware that the decision to halt non-essential services needed to be swift and sharp, and perhaps with a well-meaning spirit alongside the hope that as this population was not homogenous, most would have been able to carry on with life like the rest of the community. One could argue that it would be unlikely to have a long-term impact on those on the spectrum, especially the high-functioning ones. Fortunately, the real impact of that disruption will probably never be truly known as the period of disruption was relatively short.
One of my children, who is non-verbal, was born with global delay and multiple disabilities. Juyan was 13 in 2020 and clearly, he would benefit from every single therapy session possible. So with this uncertainty, it felt like we were just put on a long wait for the gallows.
Because of his low functioning abilities, we would often wonder what home-based learning would entail if it ever came to pass. For sure, we had dabbled with it in the preceding decade, where I had enrolled him in various online home-based school programmes, only to realise that much of the work would be done by me, sitting next to him for the entire duration of the video session. So, during this circuit breaker, my first concern was how to get that going without him throwing tantrums as the environment was different from the usual coordinated school.
While my family deliberated the solutions with our marvellous helper who was trained in therapy, we had messages and phone calls pouring in from our child's therapists as well as our friends whose children had similar needs, many of whom had just started their special needs journey and were worried sick about the potential impact of a few months (with no end in sight) of interruptions.
Service providers were even more concerned that whatever initial little gains would be lost, potentially permanently, in this vulnerable population. There were nightmares about children who would have decompensated upon sudden withdrawal of these support services. Some parents, working from home, would have had a torrid time trying to regulate the behavioural rollercoaster that their child may have been experiencing.
Unexpected positives
Fortunately for my family, we not only had a well-trained helper, but also little issues that we imagine other families had (eg, unstable internet connections, an archaic computer, lack of a working built-in camera and credible built-in mic). Having said that, we were ourselves scrambling to install and familiarise ourselves with various platforms such as Zoom, Google Meet, Microsoft Teams, Webex and GoTo Meeting.
With our older child in St Joseph's Institution International, their foresight of having a robust home-learning platform gave us less to worry about. We quickly got our younger one a cheap second-hand iPad and an additional tablet, and installed every platform that the therapists and teachers would require. However, that was when we realised that the education system in Singapore has resulted in an incredible tour de force in rehabilitative support services for special needs children.
Bereft of any IT or pedagogical support, they innovated to the best of their abilities, many admirably so. Not only did the therapists rise brilliantly to the occasion, my little one was able to exhibit the progress he had made in his years of stoic therapy. He actually responded better to the speech therapy conducted online than in face-to-face sessions. In fact, we have since made his speech therapy permanently online!
More than two years have passed, and now-15-year-old Juyan not only has regular home-based learning, but is also meeting his church friends and attending Shalom Fellowship over Zoom every Saturday in lieu of attending in person.
Thinking back, those outside the special needs world must have thought that parents had a difficult time when their services were inexplicably labelled non-essential. The true epiphany to be had was to realise the scale and diversity of support required for these special needs children, and then to come to the discovery that compared to other first world nations, we were better than most.
With the label of "dragon mom" (an endearing term given to mothers of special needs children as opposed to a tiger mom), I tend to find the positives out of the most negative situations. Instead of wallowing in the loss of social interaction, with less face-to-face therapy and school, I was able to see a side of my child in a situation that I would otherwise not have been able to. I was also enlightened by the basket of services that could potentially be unlocked, and perhaps discover more that my child and his therapists could do together. In three years' time, he would be labelled "post-18", which is a cliff looming for those who know. But unlike most parents, to whom this magical age represents the line of uncertainty as support structures disappear, I am hopeful that I will be able to find a new norm, just like he did with the COVID-19 restriction of services. The resilience I have seen among support services is a definite positive part of COVID-19.