A Mother’s Wish for My Autistic Son
The beginning of 2014 was a time of reckoning. It had been one year since I let go of the security of a monthly pay cheque for home-based work in order to launch A Mother’s Wish (AMW) (www.awakeningminds.sg). AMW is my dream to create a community that provides diverse activities at affordable rates for youths and adults with moderate to severe autism — the ones who are unlikely to lead a life of independence. Yet, despite giving multiple talks, garnering media attention, as well as running and subsidising a successful inaugural holiday programme for autistic kids and youths, I was still largely a lone parent in this quest for my vision. Moreover, with the 18th birthday of Sebastien, my autistic son, looming on the horizon — the age that heralded the "official" entry into young adulthood, I felt a desperate urgency to incorporate part-time work into his homeschooling programme in order to thrust Sebastien further into the outside world. Yet a round of phone calls to special needs organisations in Singapore, which provide job opportunities for moderately autistic youths like Sebastien, proved to be disheartening. Unless I was prepared to place Sebastien in a work facility that requires him to perform the same repetitive tasks eight hours a day, five days a week, there were no openings for him. Such a soul-destroying vocation was not a fate that I would impose on myself or anyone else, let alone my son. Anyway, Sebastien would have rightfully protested against such an environment and “gotten into trouble” pretty swiftly. And I would not blame him. For a month or so, I struggled against the temptation to wallow in self-pity. This was not the future that I had striven for when I decided to homeschool Sebastien nine years ago. Of course, even back then, a big part of me already surmised that I was embarking on a foolhardy enterprise with little prospect of success. After all, what could I expect to accomplish with a moderately autistic nine-year-old child with significant learning and language delays? In fact, I had only made this decision because the schools he had attended, while we were living in the U.S., had not made much headway in these areas. I was not driven by any grandiose ambitions that I could succeed where special needs professionals had not. All that I was confident of was that I could not possibly do worse.
Most significantly, I was clueless about the larger implications of my decision to educate Sebastien, largely on my own resources and devices. At that point in time, the existence of an 18-year-old Sebastien was still so far away in the distant horizon that it was beyond my conceptualisation. And subsequently, the consuming tasks of formulating and implementing our customised homeschooling programme, while working from home, temporarily swallowed up my insecurities and fears about the future.
And how has Sebastien turned out?
Well, my nine-year homeschooling journey has not produced a “Sebastien” who could function independently in mainstream society. Despite his fluency in reading, Sebastien’s verbal communications are limited to scripted requests that are undermined by his poor articulation. As a result, there are only a handful of people who can “converse” with him. Although Sebastien can distinguish between the different money denominations and even compute them, he lacks a true appreciation of their values. In Sebastien’s eyes, both a twenty-cent coin and a one-hundred dollar bill are equally important. Furthermore, though Sebastien possesses the navigational capabilities and confidence to take public transport, his atypical behaviours put him at risk for clashes with the public and even the authorities. For instance, Sebastien’s tendency to scrape off labels could get him into trouble if they happen to be official or important. His routine of depositing rubber bands retrieved from the ground at the tiny litter slits at ATMs could potentially be dangerous, especially when security officers are retrieving cash at the machines. In one instance, his "helpful" endeavour to remove a white thread off a young lady's black pants on the MRT was misconstrued by her as a crazy man's attempt to molest her. If I had not been there to intervene, Sebastien would have been charged with a serious crime.
Finally, to this day, my interactions with Sebastien continue to be haunted by our treacherous navigation through the turbulent times of his mid-pubertal days. For 18 months, Sebastien was relentless in using aggression to rebel against my parental authority. Our struggles with one another nearly pushed us to a point where our love could not possibly survive. Therefore, even as I marvel at how we have succeeded in forging a strengthened relationship, marked by hard-fought compromises, I regard it as a tenuous and fragile truce that can easily fray. Amidst Sebastien’s disengaging smiles and heartwarming hugs, which far outnumber his increasingly infrequent outbursts, I do not let down my guard. It is a fate that I have finally come to accept — as a mother of this autistic young man — without resentment.
At this juncture, Sebastien has gained enough knowledge and experiences in life to possess the desire to continue his pursuit of an interesting and ever-evolving existence. He inhabits an inconvenient space of yearning for a young adult’s life, while lacking the necessary abilities to achieve it on his own. As his mother, I find myself stuck with “mission impossible”: How do you reconcile a young adult’s evolving ambitions and the limitations of his autistic condition?
So this is the impasse that I have arrived at. Much that is “good” and “desirable” about Sebastien is almost completely offset by all that is “not so good” or “downright bad” about him. For parents like me, who have committed our lives to helping our children to be the best that they can be, whatever we have accomplished can all seem too little, too late. To have done so much to achieve a level of progress that is still not remotely “good enough” by conventional standards in mainstream society, is not just humbling, but also dispiriting. It can be hard to remain motivated and gung-ho when you are confronted head-on with the limits of what you can and cannot do.
While I am not entirely surprised at how 18-year-old Sebastien has turned out, the arrival of its reality has a substantiality that is a sobering wake-up call. There is no longer any escaping into the “one day, he would…” fantasy to help me get through the hard day — it is a distant echo that reverberates with taunting irrelevance. The poignant reality of where Sebastien is at further hits home when I take into account the accomplishments of his cousins, both older and younger — all of whom are progressing “on-track” through life's transitions.
Yet, at the end of the day, I am grateful for being able to “snap” out of my self-pity by recognising the pointlessness of my comparisons of Sebastien with his typical peers. I am now able to let go of my illusions and fantasies about Sebastien. The reality is that ever since the day Sebastien received the diagnosis of autism at 18 months old, we have long veered off the trajectories of the life journeys of most families. This road less travelled has inspired me to design creative templates to teach Sebastien; challenged me to discover unusual verbal and non-verbal ways of interacting with him; and tested the limits of my unconditional love.
And perhaps most importantly, I have experienced precious moments of enlightenment throughout this journey, which have led me to re-evaluate what really matters in life to me. While I had spent the first four years focusing on what Sebastien could do, I would become increasingly convicted that my mission for Sebastien is about creating a world in which he could thrive. The seeds of this mission were first planted in my mind, back in 2010, during our memorable visit of Krakotoa, Indonesia — a volcanic mountain of black ash renowned for its violent eruption in 1883…
The start of that day had been rocky: what should have been a smoothsailing 90-minute speedboat ride to Krakatoa had turned into a seemingly interminable roller coaster ride on water. For the next three hours, we were pelted by turbulent salty waves that were tossing us up and down in our helpless boat. While Sebastien threw up his breakfast and wailed in anguish, I could only cling onto the sides of the boat and pray for “land”.
Yet, just 15 minutes after climbing out of the boat on wobbly legs, Sebastien was propelling up the ash-covered mountain with remarkable ease and agility. Without any guidance, Sebastien just knew how to manoeuvre his feet on the unwieldy ashy surface. The way his feet nestled so “comfortably” in the ashes contrasted sharply with my experience: I was fighting against the sinking sensation to stay “afloat”.
But what was most striking was the uncharacteristic stillness in Sebastien’s being. For a good 30 minutes, it did not give way to his odd mannerisms and compulsive behaviours, which made him look out-of-place in most settings. And I was glad that Sebastien experienced this rare instant in his life, when being exactly the way he was — a person who was typically out-of-synch with everything around him — was absolutely ideal in every way. Of course, the poignancy that Sebastien would be feeling most “at home” in one of the starkest places on the planet did not escape me.
This image of Sebastien at one with the volcanic landscape is an apt metaphor of our life challenge: carving a niche for him in a world that has insufficient opportunities and supports for people like him. Neither child nor young adult, Sebastien is a Peter Pan with special needs, driven by his perceptions and tendencies, which often clash with the norms and realities of mainstream society. His determined quest to define his identity, in the face of his deficits and mainstream norms, is at once maddening and endearing. He is truly one-of-a-kind; and just living his life, in this world the way it is, is no mean feat.
One of the reasons I wanted the world to know about Sebastien’s water colour paintings is because many in mainstream society have a stereotypical conception of Sebastien and others like him. Due to his poor communication skills and odd mannerisms, Sebastien is often perceived as being “retarded” and “crazy”. His captivating paintings that reverberate with energy and life are a powerful refutation of these superficial judgements.
At the same time, the subsequent exhibition and sales of Sebastien’s paintings have also created an opposing image that is just as misleading. Acquaintances and strangers have congratulated me heartily, with a few referring to Sebastien as a “professional artist”, as though he had found his true calling and his life were made. However, to me, defining Sebastien with a conventional label (“professional artist”) transforms him into something acceptable and accessible. Unfortunately, this tidy portrait of Sebastien excludes much of his person; it conveniently ignores the challenging aspects about him, which can engulf this “artist” label into insignificance.
The reality is that, depending on the circumstances in which you encounter Sebastien, you could be condemning him or lauding him to the stars. The desirable and undesirable aspects of Sebastien are hard to reconcile and integrate, but they are enmeshed together to form a complex composite. You cannot enjoy the “good” in him, without experiencing the “bad”; but neither should “cancel” out the other.
It is precisely because of both the “good” and the “bad” things about Sebastien that I had felt compelled to launch the social enterprise of A Mother’s Wish (AMW) in 2013. AMW seeks to set forth an alternative future for our autistic youths and adults, particularly those in the moderate to severe range — one that places a higher priority on their overall well-being than their vocational prospects. AMW essentially goes against what mainstream society has determined to be the quintessential life of value and worth. Just because Sebastien lacks the capabilities to hold down a job in mainstream society does not mean he should be contented with a vocational life of performing mind-numbing, repetitive tasks for eight hours a day, five days a week. Contrary to what most people would like to think, special needs individuals can get just as bored at performing such tasks as anyone.
Therefore, in AMW’s school holiday programmes, autistic participants are exposed to a wide range of activities related to creative arts, fitness, life skills, and literacy. In time, it is my hope that we have the resources and labour to run the AMW programme all year-round and even incorporate activities that could generate revenue for AMW and the participants. However, given the functioning levels of our targeted participants, this would never be AMW’s priority. This essentially means that we would never seek to generate revenue at the expense of their well-being, nor would we exclude them from our activities, just because they are unable to perform vocational tasks.
With the AMW vision, I also seek to propose the notion of collective caregiving — an invitation to any member of the wider community to join us in our endeavour to cultivate the development of autistic individuals throughout their lifetimes. During our holiday programmes, service providers, caregivers, and volunteers bustle around the autistic participants in a concerted effort to engage them in the different activities. It is hard to miss the eyes alight with enthusiasm and the cheerful smiles dancing upon the lips.
Despite the participants’ occasional protests and tantrums, the atmosphere buzzes with chatter and laughter.
What makes this heartwarming dynamic so magical is that it is not premeditated or orchestrated. This wonderful spectacle of humanity simply transpires, as everyone pitches in, weaving in and out of different roles, in response to the needs of the participants. It is evident that all the helping adults are propelled by a common altruistic purpose of doing their very best to provide a wonderful learning experience for the participants. This congruence of the selfless goodwill of people from different walks of life, united in caring for the autistic participants, is emblematic of the best of humanity. This incredible effect is an affirmation of my dream of leaving behind a “family” for Sebastien and a world to which all people with moderate to severe autism could belong.
And best of all, Sebastien is playing an instrumental role in moving AMW forward: his contribution of 30% of the sales of his paintings to the AMW fund is helping to subsidise these holiday programmes. The fact that Sebastien is doing what he loves and fighting for his own future is what endows his paintings with meaning and integrity. Despite his limitations, AMW is a vehicle that enables Sebastien to do his part to create a place for himself and others like him in this world.
So if I had to give Sebastien a label, I would dub him an “autistic artist with a cause”. Now this is a label that rings true.