Falling Prey to Hope

By Choo Kah Ying

What if a chi practitioner told you that he could cure your son's autism in six months by sending energy to him for five minutes every day? And that his unique energy therapy could generate the growth and development of cells in his body? Moreover, he would give me a free one-month trial before I decide whether to tell the world about his miracle cure…

Would you believe him?

Well, I did… for two difficult months, sustained solely by the intoxicating power of hope that Sebastien would recover. The hope of recovery for our children from autism is a powerful dream-come-true – ask any parent. I am still reeling from the fact that I, a veteran mother of a 14-year-old adolescent with autism, could get so carried away that I would fall for claims that went against all sense and reason.

Here is the cautionary tale of how I fell prey to hope…

Sebastien was easily diagnosed with autistic affect at 18 months of age. A classic portrait of autism, he did not make eye contact, point, make sounds, or play, at the time of his diagnosis. Apart from his attention-catching tantrums and meltdowns in the office, the doctors also noted that Sebastien had failed to reach any milestone since he walked at 11 months old. Six months later, as Sebastien receded deeper into his impenetrable world and his three babbling sounds had become echoes of the past, the diagnosis was confirmed. Over the next three years, special needs professionals would struggle in vain to teach Sebastien. Even they were perturbed as to why this seemingly intelligent child with a mischievous glint in his eyes would not respond to, or express, language.

By the time I decided to take an active stance in Sebastien’s learning programme (just before he turned five), I already had the distinct impression that nothing would come easy with him. As with other hopeful parents, I had sampled a selection of diets, vitamins and supplements, which I was told would “turbo” Sebastien’s development and perhaps lead him to recovery. But I never saw any significant improvement in Sebastien; in fact, putting Sebastien on a gluten-free, casein-free diet resulted in him being so neurologically overwrought that he reacted in aggression at every little thing that did not go his way. With the dashing of each hope, I resolved to focus on helping him to realise his true potential to the best of my ability. I would no longer expend my limited energy on elusive quests for the miracle cure that would “normalise” him.

After almost 15 years of raising Sebastien, any notions of his recovery have become as remote to me as the likelihood of living on another planet in my lifetime. Rather, I have come to embrace his autistic nature as a part of his uniqueness. As much as possible, I have sought to cultivate his strengths, as I have endeavoured to overcome his deficits with my homeschooling programme.

Over the past five years of our homeschooling life, I have felt encouraged by Sebastien’s slow, but steady, transformation from a miserable child who tantrummed easily into a confident young man with a fierce passion for colouring, painting, skating and traveling. With the help of the customised literacy and numeracy learning templates I design, Sebastien has turned into an independent learner who does his work with minimal supervision. Though my rigorous application of behavioral management, Sebastien has become an active participant of his daily life consisting of exercise, school work, household chores and outings.

Overall, Sebastien’s progress, particularly in the last five years, could best be described as encouraging and steady, but definitely unspectacular. Regardless of what I had tried, I had not seen huge leaps in Sebastien’s development. Moreover, I certainly could not attribute his improvements to any one factor or approach. From my perspective, Sebastien’s development has been a product of a dynamic interaction of diverse factors:

While this road less travelled has been rewarding in its unique way, there is no denying that it is also fraught with exhaustion and frustration. In spite of Sebastien’s improvements, he is still a decidedly moderately autistic adolescent with significant language delays. “Moderately autistic with significant language delays” is the concise description that I had first used to describe Sebastien’s autism when he was almost two years old. 

I guess being an exhausted mother of an adolescent with autism makes me the perfect target for believing in a miracle cure.

For the next two months, as Sebastien underwent his energy treatment, I kept a log of his behaviour and scrutinised him more closely than I had ever done before. Being a “researcher” was no mean feat. It was as though I had taken on another job, in addition to the homeschooling and work responsibilities that I was already juggling as a single working mother.

Not to mention that Sebastien was no easy subject to follow. He was a wildly fluctuating subject whose behaviour could range from quiet, attentive and helpful to noisy, hyperactive and oblivious, all within a day. During his good moments, he was responsive to my instructions and prompts to speak in full sentences. At other times, he was so excitable and preoccupied with his strange mannerisms (walking sideways, bobbing on his feet, etc.) that he could barely attend to what I was saying, or comply with any of my requests. With his strong surges of energy, which enabled him to skip for a distance of 200 metres, while carrying two heavy skating bags, Sebastien was also hard to manage at times in public. On two occasions, Sebastien’s old aggression re-surfaced in which he whacked my shoulders in the MRT (Mass Rapid Transit/subway), when I cancelled one of his outings for poor behaviour.

My “researcher” role was also made difficult by the reality that I was, by no means, objective or dispassionate. In the face of a Sebastien who showed both promising and discouraging signs of recovery, I turned into an emotional yoyo, vacillating from frustration and despair to the delirious hope of being on the brink of a breakthrough. Sebastien’s conduct exerted inordinate power over my well-being; with one yelp, one word and one look, he would make, or break, my day.

Whenever I voiced my misgivings, the chi practitioner had ready explanations that covered all the bases. Sebastien’s slight improvements were attributed to the effectiveness of the energy therapy. The persistence of his negative behaviours was explained away by the unstability that was an integral part of Sebastien’s recovery, as his body and mind were assimilating the growth of his new cells. Against my own better judgment, I gave him the benefit of the doubt. I wanted to believe his version of what was happening to Sebastien: in his version, Sebastien would recover, while in mine, Sebastien would still be autistic. There was no competition.

Yet, as the month wore on, I felt the pressure to come to a conclusion, to decide whether or not to believe in the chi practitioner’s energy therapy. But there were no black or white answers. Sebastien's erratic progress was not significant enough for anyone to notice. Much as I clung to my hope of recovery for Sebastien, I felt conflicted about depicting my roller coaster experience to the world and risk resurrecting the dreams and hopes of parents, which might ultimately be shattered. Though the chi practitioner did not give me an exact figure, he did hint that he would charge a high price for his groundbreaking technique that could recover children with autism.

Throughout this period, I also felt lonely in my journey. I desperately wanted some kind of validation of what I was doing. Yet no one whom I trusted believed this chi practitioner’s claims, though they understood my openness to trying it. During my dialogues with my boyfriend, I would push for his support by highlighting Sebastien’s changes: “What about his increased responsiveness to prompts and his improving articulation of words?” He just looked at me with a resigned smile and shrug, knowing that I would not believe him: “Maybe, it’s all you!”

At the end of the month, I informed the chi practitioner that I was willing to write an article about my experience thus far, without endorsing him outright, and put it on my Website. In addition, I was also writing up detailed logs that I had accumulated over the past month for him, which would serve as a more detailed depiction of Sebastien’s changes. To my relief, the chi practitioner seemed satisfied with this arrangement and was willing to continue treating Sebastien at no cost.
 
However, towards the end of the second month, in the midst of my writing the article and the logs, the chi practitioner had an about-face. Out of the blue, he informed me that he would suspend Sebastien’s treatment until I brought in a client. According to him, there was an imbalance in our collaboration that needed to be redressed: he had been treating Sebastien for free for the last two months, while I had not produced any substantial results for him, i.e., brought him a client. Even as I protested that all I had promised to do was to tell people what I had experienced, I knew that I was facing a critical moment of truth. Did I believe in his energy therapy?
But even before my mind could find the response, my body was already moving, ready to bolt out of his centre. With my heart pounding hard, I could faintly hear myself saying: “Sebastien, let’s go. We are never coming back here again. It had all been a waste of time.” In that moment of truth, my gut instinct took over: every nerve and fibre of my being was rising in revolt, though my mind still lacked the words to explain my decision that I had not been able to make for two months. All I felt, apart from my anger, was the loosening of the shackles that had bound me to the chi practitioner.

It would take until the next day, when my intermingled emotions of anger (“I thought he was serious about helping Sebastien and proving the effectiveness of his unusual method.”), shock (“I never saw it coming.”) and fear (“Did I blow Sebastien’s chance of recovery?”) had subsided, before I could account for the swiftness of my decision. Although Sebastien had improved in his responsiveness and production of speech with prompts, his progress was still largely unspectacular, no different from what he had exhibited in the past. In fact, since the middle of the second month, Sebastien was no longer showing any significant improvement in his speech, even as his inappropriate sensory and social behaviours had persisted.

That morning, as I observed Sebastien, without the expectation that he would recover in six months, none of his strange mannerisms and socially inappropriate behaviours was as infuriating to me as they had been in the past two months. It also helped that I was not scrutinising every look and move he was making, and speculating about whether they were signs of his recovery. In the clear light of day, I felt as though I had just emerged from a world of delusion, wherein my head had been befuddled by the delirious hope of Sebastien’s recovery.

Over the subsequent days, I even experienced a strange sense of a home-coming – a return to myself, to a state of being in which I could acknowledge and embrace my thoughts and feelings, without suppressing them, or twisting them to the reality that the chi practitioner had painted for me. For the last two months, in trying to subscribe to what he was saying, I had stopped trusting my own thoughts and feelings. I was literally at war with myself: my mind was a battleground that was constantly trembling with the frequent clashes between rival perceptions.

At the time, the only thing of which I was certain was that Sebastien’s process of recovery was depleting my energy and undermining my well-being. But I was so steeped in hope that I even considered the sacrifice of my well-being to be worth Sebastien’s recovery. Thus, perhaps the most humbling and enlightening lesson I have learnt from this ordeal was that, we caregivers, in our selfless, heroic caring for our children, often forget how vulnerable and fragile we can be.

Ultimately, in our desperate quest for something that works, we may be too quick to attribute changes we see in our children to any one supplement, diet, or treatment approach, which had worked for others. To me, such a simplistic stance does not adequately take into consideration the multi-faceted nature of autism that is manifested so differently in each affected individual. Certainly, some of us may not give sufficient credit to the extraordinary physical and psychological transformation that plays a large part in reshaping our children and their display of characteristics of autism.

I have since returned to my original belief that when our children make progress, it is because of a complicated interaction of myriad factors both within and without our control. Through nutrition, specialised therapies, guidance, life experiences, and/or our unconditional love, we create a rich and dynamic environment that enables our children to progress, in spite of their deficits. I cannot explain how they interact with one another. All I can tell you is that Sebastien is continuously changing. Even amidst the madness of his erratic behaviour (that I attribute to the havoc of puberty), he is improving in his functioning. And I all can do is to keep on trying and learning to help him in the best way that I can.

P.S. There was one particularly memorable episode that occurred during Sebastien’s treatment, which I will always cherish. As I was checking out some vases at a store, I felt Sebastien sneaking behind me and wrapping his arms affectionately around my neck, while leaning next to my ear to say, with a giggle: “Love.” That word, spoken so spontaneously, made my day. At the time, I attributed this wonder moment to the positive effect of the energy therapy.

Now, when I look back upon that isolated episode, maybe it is because of me .