Smiles for Sebastien

December 31, 2011

Snapshot 1:

 

 

Suspended between night and day, it is the magical twilight hour at Yangon's famous Shwedagon Pagoda, with its towering spires shimmering in the fading light. A group of local ladies – dressed in their traditional longyis (long sarong-like skirts) and form-fitting blouses – are lined up in a neat row with brooms in hand. They are poised to engage in their ritual of sweeping the vast complex. In the midst of these diminutive women was Sebastien, my autistic 15-year-old son, who towered awkwardly above them; he too was carrying a broom. Under the orchestration of a few male leaders, along with my whispered instructions and hand tugging lightly at his T-shirt, Sebastien swept in synchrony with the ladies. As the women moved systematically from one area to another, he became one with them, united by a common purpose. Slipping surreptitious sideway glances at Sebastien, quite a few of these ladies shed their reserve and warmed up to this strange, animated young man who would occasionally break out in rapturous smiles and shrieks of delight. Though it would have been easy to exclude him, they instead made room for him within every new configuration in each new space. For that hour, he was a part of them...

 

Snapshot 2:

 

 

Seated snugly in the wooden seat of the trishaw, Sebastien was bonding with the trishaw rider who had gotten him to wear a conical paddy hat. Their connection was forged with every bump they traversed on the dirt path, which would trigger Sebastien’s yelps of excitement and cascades of giggles; the single words exchanged between them – the trishaw rider with his smattering of English and Sebastien with his reluctance to speak; and the occasional celebratory high fives. Simplistic as these interactions might have been, the mutual pleasure of these two young men was unmistakably registered in their glinting eyes and broad grins that stretched from ear to ear. Heartwarming, spontaneous, unmediated...

 

 

These two 'snapshots' of our recent holiday in Myanmar with Sebastien, who is on the moderate end of the autism spectrum with severe language delays, was a revelation...

 

One of the chief deficits of autistic individuals is their lack of social skills. Caregivers and professionals take great pains to teach them social rules of decorum and social scripts. Without being conscious of it, we send them this tacit message: If they would only speak and act in conformity to social norms, they would be better accepted by others. While some manage to respond appropriately at times, depending on their functioning levels, they do so with stilted and awkward formality, akin to those who are made to wear fancy clothes in which they feel ill at ease.

 

Over the past 15 years of raising Sebastien, I have come to realise that he is a social creature who relates to others in his unique way with varying and specific levels of intimacy and affection. Essentially, how he acts outwardly towards a person is an authentic reflection of how he feels about the latter at that moment in time. As a primary recipient of Sebastien's affection, I often joke that being loved by Sebastien comes with no real privileges. In his latest version of expressing his affection, he would nuzzle his armour-like scalp against my cheeks, grab me a little too roughly by the neck to give me a peck on the cheeks, or stab at my face with a diaper wipe to clean it — a simulation of what I often do for him. Uncomfortable as these interactions can be at times, they also make me laugh and feel all warm and fuzzy inside: my autistic son is reaching out for love, or as Jerome, my boyfriend, calls it, "affection extraction".

 

While many may deem these acts to be socially inappropriate, I strongly believe that they should not be stamped out, just modulated to decrease discomfort, or limited to certain settings and restricted intervals in the public domain. After all, these interactions are a genuine reflection of how autistic individuals feel about others and how they want to express their affection. Their way of being social — one that is most true to them — comes from within — a part of them that is often closed-up and out of reach.

 

Moreover, such spontaneous displays of affection don't come readily. They have to be earned, for they are a testimony to the quality of your relationship with your autistic child. A relationship that is built upon your daily interactions, your going through thick and thin together, and your autistic child's knowledge that you love and accept him (her) for who he (she) is. Ultimately, it is our unconditional acceptance of who they are that makes them feel connected. While we strive to get our autistic children to socialize properly, we strip them of the pleasure in socialising. And then we lament that they are not social?!

 

…So what is most remarkable about Sebastien's social interactions in these two snapshots is their pleasure and spontaneity. The Myanmar people seemed to have connected with Sebastien easily by accepting him for who he is, thus refuting a common belief that educating people about autism is the only key to dispelling ignorance and fears about autistic individuals. Though these people were neither autism professionals nor caregivers, they did not hide behind a façade of ignorance as the perfect excuse to treat Sebastien with indifference or unkindness. The truth is that I would not have held it against them, had they done so. After all, we have long encountered negative responses that have only escalated since Sebastien’s transformation into a tall strapping youth. Instead, these Myanmar people went out of their way to make Sebastien feel special.

 

But even more impressive was the fact that their kind gestures seemed to require no great effort on their part. (And those who know how laboured interactions can be with autistic individuals will appreciate why Sebastien’s interactions with the Myanmar people were so special.) One of the trishaw riders gave me two simple words to explain their ease with Sebastien: "Heart hurt". “Heart hurt” — the wellspring of compassion that takes away one’s fears and the false sense of superiority. It was broken English that could not have explained the source of their kindness more eloquently. For these folks whose sense of compassion is still ingrained in their bones, treating a special needs person with kindness and openness is obvious, for kindness needs no teaching, no education. It is present within each one of us, in the best of humanity. At the end of the day, showing compassion to those with special needs is a matter of the heart, not of the mind.

 

Epilogue

 

As the sun set upon our magical journey in Myanmar, I could not help, but dread our return to Singapore, where the most innocent of Sebastien's gestures and mannerisms, including his occasional explosions of pure glee, can elicit the most unkind stares and alarmed looks, which said "Who let the madman out?" But even in this moment, when I least expected it, I would receive yet another boost of courage to face the world...

Amidst exhausted travellers in the boarding area of Yangon Airport, Sebastien, with his tendency to step back without looking, almost bumped into an elderly man. However, the kindly man simply waved away our "sorry" with an easy smile; in fact, we ended up exchanging tales of our traveling experiences. Something in the elderly man’s demeanour made it easy for me to pour my heart out about the incredibly challenging, yet gratifying, journey we have had with Sebastien. Due to his unpredictability, every trip abroad with Sebastien is fraught with unfamiliarity and uncertainty, a risky endeavor.

 

For most of this trip, all three of us — Sebastien, Jerome, and I — were stricken with a bad cold that left us sniffling, coughing, and feverish. Yet, Sebastien managed to brave through two intense six-hour treks in the mountains; ride on a motorbike taxi for the very first time because no car taxis were available; exult in a seven-hour-long train ride that clicked-clacked across the countryside, despite the seemingly interminable stops at a few train stations; and most significantly, eke through the twice-a-day regimen of downing bitter concoctions of antibiotics followed by an anti-malaria medicine. Through it all, Sebastien smiled and laughed with the lightness of spirit, which belied the toughness of this trip. To me, he conducted himself with extraordinary courage and astonishing grace for someone with his deficits. The real shame is that most of the people who cross their paths with Sebastien in Singapore would simply dismiss him as a "crazy" person, a perception that could not be further from the truth.

 

Throughout my rendition, another man seated close by had been quietly listening to my story. With his softened gaze and a gentle smile, he was clearly another sympathetic soul. Even after the flight and the kindly old man had come by to wish us well, that man who was also waiting for his luggages would still smile at us whenever our gazes met. At that point, he still had not spoken a word, though by then, I had already felt touched by the kindness of these travellers whom I would never have the pleasure to meet again, but to whom I would be eternally grateful.

 

However, when I encountered the sympathetic soul again at the taxi counter, he approach me this time and spoke with earnestness the following words that would bring me to the brink of tears: “You make a wonderful family. Don't listen to what other people say. He's (Sebastien) great. He's better than all of us. It’s true... You take good care of him now.”

 

And with a final gaze of warmth and strength, he headed off with his partner. I stood there, dumbfounded for several moments. Before I followed Jerome and Sebastien towards the taxi stand, I lingered for a moment to tuck away the best souvenirs of this trip — the unexpected smiles for Sebastien that I have gathered along this life journey to ease my “heart hurt”.

 

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