Awakening Minds :

Sanity Under Siege

By Choo Kah Ying

Those who have read my book, Five Little White Pills: My Journey from Manic Depression to Recovery, would know that Sebastien, my autistic son, and my challenging journey of raising him, was the impetus behind my recovery. Little would I know that, just two years after the book’s publication, Sebastien, in his throes of adolescence, would be pushing me to the precipice of insanity.

Over the past year, Sebastien, the compliant child who would listen and comply with social norms in public, had been slowly, but steadily, slipping away. Powered by his raging hormones, Sebastien the Adolescent bade sole allegiance to his revamped tyrannous self that seemed determined to reverse years of his submission to my guidance. With his self-will run rampant, Sebastien began to engage in all types of inappropriate behaviours such as deliberate bedwetting and soiling of his underwears, bizarre walking, squinting his eyes, etc. The aggression that he had managed to control for four years had also begun to rear its ugly head with increasing frequency. My growing alarm about Sebastien’s new self was further heightened by his cocky air of invincibility that made him impervious to fear and my guidance.

Initially, I had gamely sought to address his inappropriate behaviours with behavioural management strategies. While some behaviours improved, others went away only to return with no permanent end in sight. But what was even more challenging was the relentless onslaught of wave after wave of inappropriate behaviours. I had barely extinguished or regulated one behaviour before another, even more outlandish and socially unacceptable, materialised to take its place.

However, the one that dealt a near-fatal blow to my sanity was Sebastien’s obsession with his penis. Not a day went by without him discovering ever-new ways of interacting with his new “best friend”. Apart from pinching, strumming or stroking it, he sometimes decorated it with sticky price tags or rubber bands. His attachment to his penis escalated to the point that there were periods of time when he would be unable to perform tasks involving two hands. His occasional desire to take his penis out of his shorts also raised the scary prospect of his arrest for indecent exposure. Regardless of what I explained and my efforts to set limits on this behaviour, the compulsiveness of his obsession persisted.

After four months of intense battling with Sebastien over his inappropriate behaviours, my waking life was turning into a recurrent nightmare. Each morning, I lingered a little longer in bed. No longer could I rely upon my once-effective cognitive strategy to counter my negative moods by highlighting the relatively pleasant reality of my life.

After all, what did I have to wake up to these days?

…A day of dreading what Sebastien would do, and the waves of frustration and rage that would surge within me.

… Another day of clashing with him over his inappropriate behaviours and his unpredictable outbursts over trivial things that do not go his way.

…And yet another day of wondering what had happened to the son I had once known and longing for the times when we used to enjoy one another.

In fact, I had gotten so caught up in my daily battles with Sebastien that I no longer smiled. Even after leaving Sebastien to run errands, my face would still be etched with a hardened expression of a vigilant warrior who could not afford to let down her guard even for a second. As I accumulated more and more days and nights of rage, frustration, despair and tears, I did little to ward away the blues that were pummelling at the edifice of my sanity.

My descent into depression seemed not only imminent, but also inevitable...

But I was no longer the depressed 19-year-old who had once cowered under the covers in dread at the arrival of a brand new day. Being a 39-year-old single mother and the sole caregiver of an autistic child, I did not have the luxury to sink into depression. For the sake of Sebastien, I knew I had to get out of bed, put one foot before the other, take care of business, and prop up the edifice of my life.

To counter my depressive moods, I returned to my mood management strategies and resources such as exercising and alternative healing techniques (breathing, meditating and acupressure). In addition, I reached out to Jerome, my boyfriend, and my parents, who rallied around me with their unflinching support. On a particularly hard day, I was grateful that I could leave Sebastien with my parents, while I took refuge at Jerome’s place to recover my nerves.

Surviving these tough days has illuminated the resilience of my spirit. I now know that, however devastated I may feel, I can still walk through the dark hours and emerge with my sanity still intact. The feelings of frustration and the sadness hangover that comes from hours of crying and sleeplessness will dissipate within hours. Most of all, in retrospect, I can see that, with the navigation of each setback, I had been inching closer and closer to a newfound understanding about Sebastien. These baby steps have culminated in our reconciliation after months of conflict.

Through my “new” lens, I have come to acknowledge that I needed to grieve and let go of the compliant Sebastien who had long “grown” away. Of course, I have been always losing Sebastien in all his different “versions” as he grows and evolves. However, as the more recent version had always been comparatively more competent and functional, I had barely noticed Sebastien’s transformation over the years, if not for the glimpses at photos or film footages. It was the unpleasantness of the multiple versions of Sebastien the Adolescent, which had led me to yearn uncharacteristically and nostalgically for the past.

At the same time, my tenacious clinging to the past certainly did not help matters. And in my self-reckoning, I saw through the folly of my ways: You see, I had wanted the hard part of raising Sebastien to be over. The compliant Sebastien was just supposed to grow up to become a contributing member of society, without more dreadful and arduous detours. Juxtaposed against the parents who have raised adolescents and adults with autism, I was just a naïve and complacent parent who had foolishly thought that she had seen and done enough…

Worse still, in my desperation to hold on to my preferred version of Sebastien, I had then failed to acknowledge Sebastien’s struggle not only with his outward transformation, but also with the invisible effects of hormones that were wreaking havoc with his sensory systems. Essentially, many of his excessive behaviours were, to varying extents, interwoven with the dramatic transformation of his sensory profile. Thus armed with this new perspective of Sebastien, I have returned to the drawing board to map out a new parenting attitude, as well as incorporate sensory strategies that have been effective in alleviating Sebastien’s sensory issues. (I will be talking in greater detail about these strategies in my next article.)

Even as I reclaim my precious relationship with Sebastien with a renewed sense of vigour and humility, I know that my current crisis with him is, by no means, over. In fact, all I can be certain of, in the uncertain days ahead, is that my sanity will be tested. However, instead of lamenting about this detour in my journey of raising Sebastien, I remind myself of the thought-(and heart-)provoking words from Jim Sinclair’s “Don’t Mourn for Us” (http://www.autreat.com/dont_mourn.html):

"This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind (my emphasis) to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.

Recently, Sebastien, in his escalating obsession over the hairs that are sprouting all over his body, shaved his eyebrows, causing him to resemble an alien child whom I could barely recognise. Hard as it was for me to cope with the ‘new look’ of no-longer-handsome Sebastien at first, I have come to embrace it. Sebastien may look like an alien, but he is my alien child, and I love him, with or without eyebrows.

Ultimately, amidst the tumult of uncertainty, it is the certainty of this love and our love for one another, which has carried me through the darkest hour. My journey of being Sebastien’s parent, though we are not of the same kind, had been instrumental in restoring my sanity. Today, it continues to infuse me with a sense of meaning and purpose. Thus, though I take pride in my work as a writer and educator, I can declare, without a moment’s hesitation, that the job of being Sebastien’s mother is the one that matters to me above all.