What Would It Take?

January 6, 2011

This the second of a two-article series about the challenges and implications of raising an individual with autism, which was sparked off by the incident described in the first article, “When Aggression Strikes… Mama Goes on Strike”. In the second article, I go beyond the role of the caregivers to address the role of the society at large.

 

If it takes a village to raise a ‘typical’ child, what would it take to raise one with autism who would grow up to be a dependent adult?

 

In Singapore, except for a handful of institutions that provide education and support services to individuals with autism, we caregivers bear the preponderant burden of caring for our children. Even as we lament about the inadequacy of such services, many of us do so only half-heartedly, feeling partially embarrassed for our imposition of the burden of our children upon society. Who can we blame for losing out in the parenting lottery and ending up with an autistic child?

For many years, I expected nothing of society. With my feet straggling the two irreconcilable worlds of autism and mainstream society, I saw myself as the buffer to ward off any possible clashes arising from Sebastien’s lack of awareness of social conventions and others’ taking offense by his social faux pas. Sticking close to him and watching his every move with eagle-eye vigilance, I would be poised to direct him as discreetly as I could with my facial expressions and hand gestures. At other times, I would shoot out an arm to block him just before he walked backward into someone, or when I was too late, apologised on Sebastien’s behalf. In other instances, amidst the unkindly stares of commuters who noticed Sebastien’s difference just because he was covering his ears, I would wrap my arm around him, imagining that I have enclosed him within a magical ring of love that could keep out the unkindness.

 

These on-the-spot interventions constituted only the tip of the iceberg of what I did to manage Sebastien’s behaviour. I subscribed to the concept of what I called the minimum standard of behaviour in various settings, i.e. one that balanced the needs of the public and Sebastien’s peculiarities. As far as possible, I sought to manage Sebastien’s quirks to the extent that they did not impinge upon the comfort of the others. The way I saw it, if Sebastien wanted to participate in the mainstream society, he would have to adhere to the minimum standard of behaviour, or risk being grounded for the day – a prospect that he dreaded.

 

Between my swift interventions and my behavioural management of Sebastien, I felt confident that I could resolve any situation single-handedly. By the time Sebastien was 12, I had fine-tuned my role as his ‘bodyguard’ to an impressive repertoire of one-word commands, swift redirection, calming gestures and quick blocks. And for a solid couple of years, I felt confident that I would be able to shoulder the full burden of managing Sebastien on my own for the foreseeable future.

 

But alas, I am no match for the hormonal fluctuations and the growth spurt, which come with puberty. Sebastien, at 14, is already towering over most Asian men with broad shoulders and a young man’s swagger. Accompanying his physical transformation is his defiant claim to be his own person, make his own mistakes and face consequences that he may not be able to fully conceptualise. My recent run-ins with Sebastien, like the day when he lunged aggressively at me in a jam-packed NTUC hypermart, have forced me to face up to a new reality.  My role as his protector has become obsolete.

 

Whether I think he is ready or not, I am no longer strong enough to be the middleman who can prevent the possible clashes between Sebastien and mainstream society. In the event of such a collision, I can only hope that both parties would emerge largely unscathed, and perhaps, even with some understanding. The world would have to teach him what I have been unable to. And yes, I have also come to accept, albeit reluctantly, the distinctive possibility that he can get into far bigger trouble than I can contain.

It has been more than five years since I have shouldered the homeschooling burden of Sebastien as a single working mother. Despite my seemingly endless pitched battles with Sebastien these days, I am quietly proud that Sebastien, despite all his deficits and delays, has grown up to be a self-reliant young man who can prepare his own meals, perform household chores and travel by himself on public transport.

 

Sebastien’s straining against my tutelage is his signal to me that my time as his exclusive caregiver and teacher is up. Each day, as I watch him step out of the front door, my heart is filled with trepidation. With his fearless strides, Sebastien thinks he is ready for the world. But is the world ready for him? Would a society that knows little about autism treat him with tolerance, forbearance and compassion?

 

 

Out of fear that their autistic children would act out in public, many parents strive to keep their autistic children out of the public’s eye. While some confine their children exclusively to their homes, others ferry their children to and back from schools and therapists in private transport, or designated school buses. By doing so, these caregivers feel that they are thus not imposing the inconveniences of their children on the general public. Others plainly admit that they simply do not want to be subject to the hostile stares and unkind responses of the public.

 

But the inconvenient truth is that our autistic children will not gain readiness to participate in the real world if we caregivers shelter them in the protective universe of our homes and special needs settings. How could they learn to participate in the real world when they have not been given the opportunity to cope with unexpected changes, handle their encounters with the public and make mistakes? Considering the fact that some autistic children need repeated practice to learn how to perform tasks, they, more than their typical counterparts, need to clock time in the real world.

 

At the same time, many of us caregivers justifiably lack the belief that our autistic children, particularly those who require more time and effort to learn to do the things that most take for granted, have a fighting chance in the real world. When we look around us, we are filled with doubt that we can count on the compassion, patience and openness of mainstream society to extend a helping hand to our children, especially when we are gone. And so once again, we come full circle to the question that haunts us caregivers: Would our kids be loved and treated with decency when we are gone?

Ocean Heaven, a Chinese movie starring Jet Li, confronts this question head-on. This film depicts the frenetic quest of a terminally-ill father to secure a future life for his 22-year-old autistic son before he dies. At first, it seems as though there were no places other than mental hospitals that were willing to accept an adult with autism. But one by one, a kind neighbour, a former principal of a special needs school and her contacts, and even the father’s reluctant boss, came forth to ensure that the son would have a home, a job and a life.

Most remarkable of all, the awesome responsibility of caring for an autistic individual that had been borne fully by the father did not seem so crushing when it was spread among several individuals. With each doing his and her small part, the seemingly impossible task of raising this young man without his primary caregiver became possible.

 

To top it off, some of these individuals who stepped up to take responsibility for the young man were just ordinary people with no specialised training in autism. I highlight this point to counter the erroneous assumption held by many that only trained specialists would know how to interact with an autistic individual. “I am not trained” becomes an all-too-easy excuse for most to retreat from autistic individuals, forgetting that they are just human like the rest of us. Instead of relegating the task of raising autistic children to caregivers and specialised professionals only, everyone can do his/her part, however small it may be, to treat them properly, as one human being would another. Autistic people are often described as being trapped in a world of their own. But has mainstream society made itself sufficiently welcoming enough for them to emerge from their world?

 

Many of us caregivers often start out on our journey feeling unknowledgeable and helpless about our children. I too had felt so intimidated by the fortress of specialised terminology and specialties surrounding autism that I had dared not take the initiative to connect with my son for the first few years. But, after almost 15 years, if there is one thing I have learnt, it is that good caregivers, teachers or professionals distinguish themselves less by their credentials, but by an openness of spirit that can value the uniqueness of individuals with autism. These individuals would stretch their mind and heart to the ends of the earth to figure out how to help autistic individuals under their care to realise their full potential.  

 

In the midst of grappling with Sebastien’s rocky phase of teenage rebellion, I have been fortunate in finding a handful of such individuals. They constitute the beginning of what I would like to consider as the dream team to help me raise Sebastien. Despite his lack of experience with autistic children, Jerome, my boyfriend, has forged a one-of-a-kind bond with Sebastien, founded on coded greetings (“Mustache-Beard”), self-imposed labels (“hot dude and cool dude”) and shared fashion sense (“muscle shirts”). Next up is Coach Sandy Snakenberg. He has not only strengthened Sebastien’s body, but also imbued Sebastien with discipline and confidence, through a rigorous conditioning programme and a customised apprenticeship. And in Moh and Mas who run the Little Gardens School in Serangoon, I have found two dedicated and experienced special needs teachers who are sharing my responsibility of teaching Sebastien.

 

Finally, as Sebastien is now travelling by himself on buses and the MRT to Coach Sandy’s gym, as well as Moh and Mas’ school, I am also enlisting the support of the public to be my set of eyes. Accompanying Sebastien on these unchaperoned trips is a laminated card that is attached to a bag hanging around his neck. The card reads: “Hi, my name is Sebastien. I am autistic. My mama is training me to travel on my own. If you have any concerns, please call her at XXXX.” With this laminated card, I am essentially asking for the public’s understanding and intervention (i.e. call me) if necessary. In this little way, I have distributed a piece of my burden of raising Sebastien to the public. But I believe it is a ‘bearable’ piece.

Unlike the father in Ocean Heaven, I hope that I would live to witness the creation of an ever-growing web of open-mindedness, compassion and love in mainstream society towards individuals with autism and other special needs. In my vision, this web would not simply serve as a safety net for someone like Sebastien. Over the last decade, I have done my utmost to teach and train him so that he could be an active participant in the weaving of this web, not just its passive beneficiary. However, being moderately autistic with significant language delays, he will always need a helping hand here and there, every now and then.

Raising a child with autism is terribly hard when caregivers have to bear the full burden. But if everyone takes on a little piece of that responsibility, maybe, a village could raise an autistic child who would grow up to be a dependent adult.

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