Coming Home to a Home
Through the third and final instalment of our short trilogy of stories, we’ve come to Xuan’s journey at St. Andrew’s Adult Home (Sengkang), the first of its kind of residential services for adults on the autism spectrum in Singapore. Here, we share insights of his experience at our home, and keep you current with how he’s doing so far.
A roly-poly figure with bristly hair sat at his work desk quietly, working on his favourite activity set. He had a task to complete: to arrange and match various food products into their respective categories. A while later, he pushed his chair backwards, held a piece of the puzzle and walked to the nurses’ station.
Xuan passed the puzzle piece to Tay, a care staff on duty, implying his desire to have some food.
“No, Xuan, you have already finished your lunch less than one hour ago. No more extra food for you.”
Xuan is fond of food, but at the same time is picky about what he puts into his mouth.
Being fond of rice products, he loves his Asian food staple – white rice and rice crackers. Having a huge appetite, he can gobble down at least 1.5 servings of rice at each meal, and still demand for more with a wide grin. Yes, Xuan can always have more food.
His brows furrowed for a moment, quickly replaced by another wide grin on his face, his signature, daily look. Undeterred by the rejection, he took it in his stride, walked back to his seat and resumed his activity with a smile, as he knew that he would still be interacting with food, albeit in a different way. Simple pleasure.
Food, is a double-edged sword for him – it brings him happiness, but can also be a weak spot, especially when he does not get what he wants.
It was like any other day in May. As expected of a common sultry summer day, that day in May 2019 was just as warm and perspiry, although less dreary. There was a buzz at St. Andrew’s Adult Home (Sengkang) [SAAH], a new residential service operated by the autism centre. Staff were eagerly awaiting the home’s newest addition, its third resident at the residential facility, which had begun operations just a month before.
A burly young man, accompanied by a middle-aged man, arrived at the entrance. Large beads of perspiration trickled down the sides of his face. Brows were knitted, his facial features were pulled in together, and concentrated in the middle of the face. His eyes keep darting around, trying to make sense of his new surroundings.
“It’s okay, Xuan. You’ll be alright,” his father said gently.
Xuan looked at his father’s face for a moment, and sat down at the sofa with him, seemingly able to understand and agree that he was and would be in safe hands.
Tall, strong and burly, Xuan is, despite the towering and menacing demeanour, quite the opposite where his personality is concerned. Once you get to know him, and look beyond the physical, you will be like the care staff who are frontline staff tending to the residents at SAAH, won over by Xuan’s gentleness and megawatt smile.
Carrying a large teddy bear almost 2 metres tall, Xuan is just like his prized possession – large and plump, baby-faced, affectionate and loveable, such that at first sight, the impulse would be to cuddle and pamper with lots of tender, loving care.
Xuan suffers from regular epileptic fits, which happens a few times a month at night. Instead of allowing Xuan to stay at SAAH where he could receive professional and appropriate care round the clock, Mr Yeo, his father, chose to bring him back every evening, be it rain or shine. At least until he was assured that Xuan was fully ready for full-time residency away from his parents. Caring for Xuan was a personal obligation and duty, of which Mr Yeo was apprehensive to let go. After all, Mr and Mrs Yeo have been the main caregivers for Xuan for over 2 decades. Had it not been the toll caregiving for Xuan has taken on the physical, mental and emotional health of the family, Mr and Mrs Yeo would have been reluctant to explore other options of daily caregiving for their precious child. It is therefore no wonder that the family requested for a slow and gradual transition for Xuan into the home; a transition that took almost 6 months. It was a transition that brought increasing assurance that a community could come alongside them in the care of their loved one on the autism spectrum.
Mid-afternoon. Xuan was seated at the sofa in the living room, accompanied by his woolly stuffed bear. His housemate, Martyn*, who shares the same past-time of watching TV, was with him. Feeling at home, the constant chatter in the background was now comforting. With his trusty companion in embrace, Xuan felt secure. Slowly, his eyes were shutting.
“Xuan, wake up. Don’t sleep.”
An alert care staff, seeing that Xuan was drifting to sleep, gave him a light nudge. For some reason, sleep can trigger Xuan’s epilepsy. To avoid triggering his epileptic attacks, Mr Yeo had constantly reminded the staff to prevent Xuan from falling asleep in the day. That advice was not to be taken lightly, and the staff remembered by heart.
Some low yet audible grunts could be heard.
The buzzing sound from the shaver. The eyebrows on Xuan’s face come close to each other.
The vibration from the shaver. Xuan looked straight intently, trying to ignore the humming sound.
Tufts of hair fall on his hands. He brushes it off.
“Don’t move,” cooed the hairdresser, as he tilted Xuan’s head slightly, so he could trim his hair properly. Xuan fidgeted for a moment.
“Soon, soon. We are finishing. Here’s a biscuit for you,” interjected Mark, a care staff reassuring that the haircut would be over soon. Calming and distracting him with some food was something the staff at SAAH had figured out to help Xuan relax and quieten down, after many trials and meltdowns. The frowns on his face slowly smoothened.
Layers upon layers of multiple sensory inputs proved very trying for a good-natured fella like Xuan to sit through, but he continued to soldier on bravely. He understood that a well-groomed Xuan was good for him; that he would feel more at ease, given the warm climate in Singapore all year round. A few moments later, his ordeal was finally over, but little did he know that another issue was about to unfold.
“Gehhhhhhhhhhhhhhhh…. Gehhhhhhhhhhhh…. Ahhhhhhhhh!”
Constant screams filled the air as Xuan and Mark stepped into the residential area. A fellow resident, unable to verbalise his requests, was shouting to show his displeasure.
“Xuan, cover your ears. Let’s go to the other cluster to rest.”
Knowing that Xuan would be triggered by the commotion, Mark brought him to the other cluster, where it was quieter for him to regulate his emotions. At times, Xuan would be triggered by the noise and suffer from a nervous meltdown. Such meltdowns became fewer and fewer as care staff applied observations, learnt and adapted from various trials. With some nudges from the care staff, Xuan was guided to somewhere quiet. Back to his room.
After being at SAAH for more than a year, Xuan can be said to be well-adjusted. Thanks to the teamwork among frontline care staff, therapists and the team of psychologists and social workers, his self-injurious actions have decreased tremendously, closer to nil. With each inchstone accomplished, staff are more motivated and driven to serve even more selflessly.
Always wearing a smile on his face, Xuan relaxed comfortably on a bean bag seat, propping his legs on a large exercise ball. Back from his weekly morning park walk at the nearby Compassvale Ancilla Park, Xuan was glad to be back at the home, seated and resting at his favourite corner of the room. Regulated and at home again, the walk was considered a fruitful outing and exercise time for Xuan.
For someone who would hit himself to show his frustration, Xuan has improved significantly. Gone are the days of self-injurious actions, which could result from his discomfort over perspiration through outings and park walks. In the past, various staff have had lots to prepare for when bringing Xuan outdoors. These days, Xuan communicates his needs and wants using visuals, and care staff are also better able to understand him, allowing for clearer identification of early warning signs in anxiety.
In fact, one recent incident affirmed the team of care staff and psychologists working with Xuan that he has so adjusted to residency at SAAH, that it is indeed his home. Xuan, despite his fellow housemate’s meltdown, remained calm and collected, attending to his task of activities, assured that he was cared for and safe.
In April this year, Xuan’s father, Mr Yeo relented and allowed Xuan to stay overnight daily given the current pandemic situation. Right up to then, Mr Yeo had faithfully ferried Xuan back to where he used to call home for the past 24 years nightly, and back to SAAH early the next day.
The love he had for Xuan, as well as trust of our staff to care for Xuan were the game changer for him. His worry had always been Xuan being prone to epilepsy at night, which our care staff are happy to report are now minimal, if at all.
This has been a confidence boost not only for Mr and Mrs Yeo, but also for the staff at SAAH. With the change in routine, Xuan learnt to be self-independent. This was a big shift from the past where Mr and Mrs Yeo would give him undivided attention and care on a daily basis. A blessing in disguise indeed, as staying independently without being on home leave (home leave was constrained during the recent Circuit Breaker) has been the catalyst for the biggest improvement for Xuan.
We recognise that while Xuan has made progress, our journey to care for Xuan is a continuous one. Such is the nature of a residential service that is 24/7. Regular training and therapy sessions are in place to ensure that he remembers and retains his skills. At the same time, more work needs to be done in managing other aspects that need improvements.
Oftentimes with autism, individuals can under or overestimate the needed strength and pressure, as they go about their daily lives due to sensory processing difficulties that come with the condition. For Xuan, what this means is that he could sit on a chair thinking he was gentle when in fact, he had exerted so much strength that the leg of the chair would wobble, and before long, would give way.
To help him along, our Occupational Therapist is presently working closely with him to help manage his strength control. We are still in early days with this area of development, and much more work is needed.
Each resident at the Home has an Individual Care Plan (ICP) specially catered and designed for them. To allow Xuan and his fellow housemates to continue their lifelong journey in autism, we need your generous support, be it through volunteering, donations or walking with us in advocating for autism awareness. Because of your contribution, we can continue to walk alongside with more persons on the autism spectrum to lead dignified and meaningful lives through education and intervention to maintenance of daily living skills.
As Xuan, or Xie Xuan, whose name in Chinese characters suggests, it is to “glow brightly together”. You can also play a part in illuminating brightly the lives of our beneficiaries. It may be a fraction of your lives, but to our beneficiaries, including Xuan, it is a significant gift they will benefit for the rest of their lives.
Just as Xuan reached out to Teacher Visa at the start of his journey with us at St. Andrew’s, and Coaches Eve and Basti reached out to reinforce learning and maximise his quality of life, we hope that you will reach in and partner us, as we journey through a lifespan with each and every one of the children, youths and adults entrusted in our care.