Week 7 of Serialization: Where Does My Autistic Son Belong? Chapter 7
In 2019, I published Where Does My Autistic Son Belong?. It chronicles my struggle with raising my adolescent autistic son, Sebastien, and my subsequent decision of setting a home for him in Bali. As part and parcel of A Mother’s Wish initiative to raise awareness about the need to learn treat autistic individuals with genuine respect and empathy, I am serializing the Book on Medium. All chapters can be accessed here: https://bit.ly/38MpavD
To purchase the book, please use this link.
CHAPTER 7
A MOTHER’S WISH GONE WRONG
(November 29th — December 5th, 2015)
The first two days of Jerome’s absence largely went without a hitch. Fighting off my sense of foreboding, I maintained my equanimity by focusing on executing the different tasks that had to be carried out. Apart from carrying out my routine activities with Sebastien, I also had to fill in for Jerome’s duty on Sunday, which was to prepare the frozen pizza. Over the past few years, Sebastien had made it abundantly clear that Jerome was the preferred preparer of his pizza. To ensure that I would do it just the way Sebastien liked it, Jerome left meticulous instructions. As a testimony to how much we had become intimidated by Sebastien’s outbursts, Jerome’s instructions were the equivalent of an instruction manual. When I completed them, I wanted to break out the champagne to celebrate. I cheered myself on: I can do this!
Next, I also had the additional responsibilities that were related to A Mother’s Wish holiday programme the next day. With Sebastien’s help, I assembled the worksheets for the first day by putting them on clipboards for the individual participants, prepared the name tags for the participants and volunteers, as well as sent out reminder messages to the parents, paid service providers, and volunteers. The first day of the holiday programme came and went uneventfully. Sebastien was accompanied by one of my favourite repeat volunteers — a cheerful and kind young man who had the composure and maturity to work with Sebastien. All the participants enjoyed the activity of making vegetable print art with sliced carrots, potatoes and cucumber. When we got home, I sent out thank-you messages to everyone involved, accompanied by a small sampling of photographs to the different groups of people involved.
Alright, one activity down and eight more days to go before Jerome comes back. Please let me get through this!
I wasn’t too worried about Sebastien’s behaviour for the second day of the holiday programme, as he had already experienced this embodied movement activity the previous year. Natalie, the practitioner, was highly effective in engaging the participants with her carefully-organised sequence of movements that involved using colourful ribbons, balls, and the parachute. She had suggested this activity as a bonding session between parent and child. Even though I had thought that the activities were a little juvenile for an adolescent, Sebastien and I enjoyed ourselves thoroughly the last time, despite the tensions at home. Yes, I still remember our big smiles on photos: Sebastien was looking slightly bizarre with his eyebrows partially plucked.
Nonetheless, the activity was taking place at a different venue. I had visited the space before for an inspection. It was a nondescript room that looked slightly old and run-down, with tables and chairs pushed to the sides. When I noted the handful of stickers marking electricity sockets and informed the venue host that Sebastien would likely remove them, Joshua, the venue host, said he did not mind. Therefore, even though the place did not look particularly nice, I decided to take it because I would not have to worry about the place looking much worse should Sebastien or any other autistic participant decide to do something to it.
Boy, was I wrong.
From the get-go, Sebastien’s mind was never on the activity at hand. As the participants were asked to skip around the room, Sebastien executed his moves in an absent-minded fashion. His eyes were swivelling around the room. Before long, Sebastien had embarked on a mission to hunt down every single sticker and label that he could find in the room.
So I enlisted Hamid, a volunteer who was a special needs teacher-in-training, to help me with Sebastien. As we followed Sebastien in our attempt to direct him back to the activity, I berated myself for my superficial inspection of the dreary room. There were plenty of stickers in this room: apart from stickers on the electrical sockets, there were scotch tape labels on the chairs and tables and under them. Each time Sebastien went through a category of items and I thought that the nightmare would be over, he would just be getting started with something new. After he was done with the tables and chairs, he pulled up a chair to rip off the manufacturing label of the air conditioner.
Now there were no more stickers to remove. Until that day, I had never seen Sebastien go on such a sticker rampage. By this point, I had hoped that Sebastien’s appetite would have been sated. After all, he had removed more than his usual share of stickers. However, that day, he was like a sticker “addict” on a binge to feed a craving that seemed to have no limit: the more stickers he took off, the more he felt driven to hunt for them. His sticker compulsion seemed to have taken over him completely. Not registering anyone or anything, Sebastien was just going around the room in a restless frenzy, looking for something to remove.
Suddenly, he went towards a wall to pull off an A4-sized laminated poster. Chong Peng, my friend who had been accompanying me every single day to photograph the activities, instinctively pulled it away from Sebastien. Sebastien charged across the room. As he pounced on me, I staggered backwards and crashed onto a chair, dragging down a window blind. And when Hamid and Chong Peng pulled him away from me, Sebastien pounded his head with his fists, his eyes looking half-crazed and his nose blaring from the heavy pants he was emitting.
Though I was still reeling from the shock, I pulled myself up quickly. When a volunteer asked me if I was okay, I nodded with my “organiser” face, as though Sebastien’s attack on me was nothing. I didn’t want anyone to know that I was struggling not to break into tears. Instead, I retreated behind my “organiser” façade, quickly sending a WhatsApp message to the venue host that we had torn off blind from the rail and that A Mother’s Wish would pay for it.
At the same time, there was also an immediate crisis to defuse: Sebastien was banging his head with his fists. I started counting over and over again, together with Natalie’s support, to get Sebastien to calm down: “It’s okay, Sebastien. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10.” He looked clearly distressed: his forehead was dotted with drops of sweat and his wide, stricken eyes were brimming with tears.
Soon after, Sebastien’s thumping of his head slowed down enough for Hamid and Chong Peng to pull down his arms and we could get him to sit down. Natalie brought over a squeeze cushion for him to hold onto, which seemed to soothe him further. Suddenly, Sebastien turned into a contrite little boy, sitting there crying and holding on to a squeeze cushion, utterly unlike the young man capable of hurting anyone.
Although I knew Sebastien was looking towards me the mother to comfort him, I retreated into my role as an organiser to stave away my hurt feelings as a mother. From the corner of my eye, I could see all the participants, parents, helpers and volunteers gathered at the far end of the room, away from Sebastien. Due to the torrential downpour that had erupted just moments after Sebastien exploded, everyone had been a captive audience, trapped in the room, even though the programme was over. As a result, they were also subject to Sebastien’s banging of his head with his fists. At the first sign of the rain dwindling, the parents and volunteers took the initiative of helping to escort the participants on public transport and returning them to their families. Even Sebastien managed to get on the bus with Hamid without further incident and Chong Peng kindly walked Sebastien and me home, just in case anything else should happen. Therefore, even as an organiser, I was essentially rendered useless because of what had happened between Sebastien and me. At the end of the day, I couldn’t pretend that I wasn’t a mother of an autistic participant who had massively disrupted the programme.
In retrospect, I should have just been grateful to everyone who was graciously helping me with their kindness and empathy. However, instead of being a gracious recipient, I felt embarrassed. Their tolerance only made me seethe with resentment at Sebastien. As far as I was concerned, Sebastien was destroying everything I had tried to build for him and robbed me of any modicum of joy I was striving to find in my life with him. Whatever happened to “Make Things Right”?
The next morning, during our exercise session, I abandoned the façade of composure that I had cultivated for months. I threw a teary tantrum at Sebastien akin to a madwoman. I emitted teary howls, accusing him of violating the “make things right” motto and unleashing a scream of recriminations about all the bad behaviour he had committed over the past five years. Although the objective side of me was trying to pull me back from my hysteria, I didn’t. In fact, I even justified that my crazy outburst could actually shake some sense into the unrepentant young man. However, Sebastien looked largely unmoved by my outburst: he just looked at me curiously and stopped his usual noises. Otherwise, he only seemed to be concerned that I got on with executing the steps of the exercises correctly.
But then just moments before we were to leave for the third day of the holiday programme, I could see Sebastien amping up — he was bouncing on his toes as though he were ready to take off into the sky and moving his legs rhythmically to Gypsy King that he was listening to on his iPod. From the crazy glint in his eyes and edgy intensity of his stance, I feared it was not going to be a good day. The calm and controlled chords of Glenn Gould’s nuanced rendition of the Bach composition playing in my ears could do nothing to keep my nervousness about the day away.
On the commuter train, Sebastien kept intruding into my space to put his arm around my neck and squeeze it tightly. And when I told him to let go, he would refuse; instead, he would tighten his squeeze on my neck. Ironically, for the first time in my life, I was actually glad that other commuters on the MRT were staring at us. I pointed out to Sebastien that the other people were watching and they could call the police. Only then would he let go of his grip on my neck, even though he would smile dismissively at me to show me that he wasn’t scared. Then a minute later, he would put his arm around my neck again to squeeze it. This menacing interaction went on for the duration of the 20-minute train ride that I thought would never end.
Once I emerged from the commuter train, I walked as quickly as possible from Sebastien to get out of his reach. And when we met up with the group of participants and volunteers congregating to catch the bus to go to the same venue as yesterday, I literally handed Sebastien over to Hamid. I simply told him that it was dangerous for me to be near Sebastien. Hamid nodded quietly and took over. At least, I would be safe for the next three hours.
Little did I know that I had merely shifted the bull’s eye target to Hamid. As Iris, the warm and cheerful service provider, was merrily guiding nine autistic participants to stretch their limbs to the beat of lively, rhythmic music, Sebastien suddenly turned on Hamid, whacking him on his arms and shoulders, while baring his teeth. Hamid was struggling to hold Sebastien’s rapid whacking without retaliating. I dispatched Chong Peng to Hamid’s rescue. Chong Peng reacted so fast that he didn’t even put down his camera around his neck. It swung wildly from side to the side as he sought to pull Sebastien’s arms away from Hamid’s shoulders. Between the two of them, they managed to hold down Sebastien’s limbs and redirect him towards the activity.
By this point, the vigorous activity had given way to something far more sedate: the volunteers were asked to hold different body points of the autistic participants to calm them down. Thankfully, Sebastien actually quieted down, turning into a docile creature with an almost child-like demeanour. I brought in another volunteer to help Hamid. Together, they made it through the remainder of the session without any more meltdowns. Of course, the whole time, I remained watchful.
This was a tiny miracle. As the organiser of A Mother’s Wish holiday programme, I should have been happy with the day. Thanks to the volunteers, no one got very hurt. When I apologised to Hamid and insisted on applying the disinfectant on the red scratches on his arm, which Sebastien had inflicted on him, he smiled at me reassuringly, telling me that Sebastien was giving him a real-life initiation into his career. Furthermore, most of the autistic participants, including Sebastien, seemed to have enjoyed the programme that we had planned for the day. The scene was amazingly calm, with the volunteers helping the participants with the after-activity worksheets. Sebastien, a veteran of my worksheets, was particularly independent and focused on the task at hand, making the job of his volunteers extremely easy for a change.
But I wasn’t appreciating the peacefulness of the situation. Instead, I was going through a surreal, out-of-body experience. Inwardly, my mind was spinning at thousands of miles per hour and transporting me far away from this reality. Sebastien’s unprovoked attack on Hamid dealt a fatal blow to A Mother’s Wish holiday programme. Having someone like him endangered the others. It made me sick at heart that all the outpouring of love, effort, and support that had made this holiday programme so extraordinary social could be wiped out by Sebastien’s action. To me, Sebastien and I were letting down all the good people who had supported us and A Mother’s Wish in so many ways.
More than just spelling the demise of A Mother’s Wish holiday programme, the very public nature of Sebastien’s aggression was a rude awakening. Our homeschooling universe was in shambles. Everything I had done for Sebastien from committing to homeschooling Sebastien and creating A Mother’s Wish had amounted to this: a menace to society who would not hesitate to hurt himself, me, and others who stood in his way!
With this acknowledgement, I saw that I could no longer pretend that I could maintain my role as Sebastien’s guide in life to protect him from himself and others.
The day that I would have to call the police was near at hand. For years, I had resisted the temptation to call the police on Sebastien, regardless of how injured I got and/or how frightened I felt. After all, I knew that calling in the police could set in motion a train of consequences that could quickly veer out of my control. I did not have the faith that the authorities would know how to intervene with Sebastien. It was always an option that was good to have in my pocket, not to use it, but just to know that it was there.
However, on that day, I knew I couldn’t take it anymore. I had had it: all of a sudden, the accumulated weight of all that had transpired over the past five years came bearing down on me. Apart from the earlier episode I had recounted, most of the individual episodes of Sebastien’s meltdowns had melded into a blurry history of head-banging and aggression, along with a “trail” of broken cups, glasses, bowls, plates, noodle machine, and even the wooden frame of a kitchen cupboard under the sink. The skin on my arms, in particular, etched with faint traces of past scratches, bumps, and bruises, and then covered over by the more recent ones, also served as a visceral chronicle of my heartbreaking struggle with Sebastien, the young man. Each incident only portended the next one that threatened to be even scarier and more out-of-control than before, as Sebastien grew bigger and stronger, as well as more frustrated, into young adulthood.
Jerome was the only person I knew who could contain Sebastien in his overwrought state. But he was away in Europe for work and would not be returning for another six days. I had nothing left in me to ward off Sebastien’s onslaughts of aggression and hold up the fort until Jerome’s return.
In my state of helplessness, I lashed out at Jerome during the lull of this challenging day of the holiday programme, sending a tirade of angry SMSes at Jerome to blame him for going away at a “terrible” time. Later that night, during our daily phone call, I accused him of leaving me at the mercy of Sebastien. I was resentful that he was ensconced in the comfort and sanity of his professional world, miles and miles away from my world in which my own sanity and well-being were under daily siege by Sebastien. Most of all, I wanted to blame him for the likelihood that I would call the police. I didn’t want to have to go through with this unknown eventuality on my own.
It was a one-sided phone call. Regardless of how provoking or unfair my recriminations were, Jerome barely spoke. His silence only left me drowning in a puddle of angry, frustrated tears. In my state of hysteria, I chalked it up to Jerome not caring enough about us. Of course, it was blatantly untrue. As with everyone, he was all out of ideas about what to do with Sebastien. For someone like Jerome who could always be counted on to come to the rescue of everyone, feeling helpless about redressing my deteriorating relationship with Sebastien was frustrating. At that point, I didn’t care that I was being unreasonable. Jerome just should have been here, like the countless times in the past years when I had stomped out of my flat in fury and tears, or he had left events early to be home for me.
After that, to get through the remainder of the night, I scrolled through the Internet on a supposed quest for ideas and strategies that I could use to help me contain Sebastien’s aggression. In truth, I wasn’t looking to find something useful, for my past searches had always yielded nothing. I was just engaging in the act of searching to take my mind off my fear of the days ahead.
But the next night, during one of these Internet searches, I came across an article entitled “The Monster Inside My Son”. The title resonated with me immediately: sure enough, its author, Ann Bauer, was writing about her autistic son. Reading the article was like connecting with someone else who had lived my life and understood everything that I had gone through. Like me, she was a dedicated mother who had celebrated her son’s autistic nature within what we had thought were the reasonable limits of societal acceptance and documented it extensively in her writings. Yes, our sons were our inspiring muses, not only in writing but also in life. However, as her son entered the years of puberty, he was also engaging in destructive and inappropriate behaviour like submerging electronic devices in water, clogging the sink and toilet with various items, and urinating in all areas of the room. Sebastien had done shades of the same.
The big difference though between Sebastien and Ann’s son was that the latter could articulate how he was feeling in words to a far greater extent. When Ann asked him why he urinated all over his room, he replied that he felt “caged”. Although Sebastien was not able to verbalise this in words, I had always gotten the impression that our life in Singapore, whether it was the 67-square-metred flat we lived in, the tidy, landscaped parks, and the rule-abiding mentality, was akin to a cage for him. Whenever Sebastien stood by the grilled window, he resembled a prisoner looking through the bars of his confinement. Even when he was walking on the street, his bounding strides in the crowded underpasses often made me sense that Sebastien was occupying a space that was way too limiting for a being who wanted to take flight into the sky, away from these surroundings to another country. It is little wonder that Sebastien was always a lot happier when we travelled overseas to natural surroundings with large spaces and fewer people. On a relatively isolated beach in Thailand, with no more than 10 people within sight, the vastness of the ocean and the coastline stretching beyond my vision seemed large enough to contain the wild and feisty spirit of Sebastien, as he leapt and yelped uninhibitedly in the waves. Yes, in such places, you could see he belonged.
But the part of the article that really penetrated into my being with its awful reality was her son’s attitude towards her. After experiencing violence in his hands including an episode when he hurled her across the room, Ann institutionalised her son. One day, he had to be admitted to the mental hospital and medicated heavily after attacking a female staff member at the residential facility. He had been frustrated about being stuck indoors due to the inclement wintry weather. When Ann, escorted by two male nurses and her other son, lovingly approached him and told him she was there to help him, he warned her to stay away from him or he “might kill [her]”. She wanted to have attributed her son’s violent behaviour to some kind of physiological causes such as brain damage. However, after reviewing the MRI scans, a psychiatrist had told her that there was nothing that could explain her son’s behaviour other than “adult autism” and the “one awful direction it c[ould] take.”
It might seem unbelievable, but reading this heartbreaking article was liberating.
Over the past five years, I had reflected and strategised time and time again about how best to cope with Sebastien’s pubertal changes. In the process, I had undergone numerous batterings in his hands, shrugged off my injuries and heartbreaks, and struggled to recover my sense of trust and faith, only to succumb to yet another attack. Each and every time, I had bounced back, refusing to give up, clinging on to find another solution, and pushing myself to do better. Through it all, I wanted to believe that there must be a way for me to help my son get better.
But this article helped to pull apart the illusory veils of hope that I had clung onto since Sebastien’s entry into puberty. For all of Sebastien’s strengths, none of it could combat the destruction he could wreak in the terrifying seconds of aggression when his darkness rears its ugly head. Ultimately, it didn’t even matter how many good days Sebastien could clock: his track record would be torpedoed by just one bad day and engulf all that was good in him and his life in a heartbeat.
Most significantly of all, reading the article also made me realise that all this would happen regardless of how cool and composed I was, or how loving I was. Essentially, despite my earlier reflections and attempts to maintain my composure around Sebastien, what I did didn’t matter. In fact, the periods of calm in retrospect, which had seduced me with the promise of a brand new beginning, now seemed like a deceptive mask that had been dangled in front of me to lure me into believing an illusion that would never come to pass. It couldn’t change the “awful direction” of Sebastien’s “adult autism”.
I felt as though someone who knew what I was going through had given me permission to let go. This was an atypical communion through words and experiences, which transcended both space and time. With the scars on her body and the heartbreaks she had experienced, Ann possessed the experience to tell me to stop trying to fight against what seemed like the inevitable tides of Sebastien’s growing destructiveness.
All these years of suffering seemed to have culminated into this definitive moment of awakening. I no longer felt stuck on a treadmill of hoping, trying, failing, and then starting all over again.
Although it could have been a bitter pill for a committed homeschooling mother to swallow, I had had five years of fighting with Sebastien to come to terms with this terrible outcome and make peace with all the sacrifices I had made. For what it was worth, I had given it a good go. Despite all my raging against Sebastien for my sacrifices in this pursuit of our homeschooling life, I had no regrets. Even if my future self today had warned me about this outcome, I would still have tried to fight for another outcome. In the end, to borrow from Ann Bauer’s phrase, “the monster inside my son”, was too formidable. My love, hope, and spirit had not been enough.
In stark contrast to my hysteria of the two previous nights, I entered into a meditative state that night. After feeling so trapped in the status quo of our life, I finally knew what I needed to do. There were two options before me: 1) continue on this path of unhappiness and risk injury and even death, or 2) build Sebastien an independent life, away from me. I chose to live.
There is no denying that my original impetus for searching for an alternative place for Sebastien to live came 100% from a place of fear. I didn’t want to die. Had I not feared for my life, I would not have felt compelled to seek out an overseas solution. At the point of conception, the idea still lay in its amorphous state. I had no idea of the significant obstacles that I would encounter along the way. However, my survival instinct, coupled with my fear, was a powerful force that would rock me out of my complacency and propel me on a road less travelled. That night, I finally fell into a deep sleep, nestled in the possibility of a solution for our ordeal.
But I still had to survive the next few days of A Mother’s Holiday Programme.