When he was a 15-month-old baby, Sebastien Choo stopped making any babbling vocalisations, recalls mummy Kah Ying Choo.
None of his milestones were met after the walking milestone at 11 months, she recalls.
By 18 months of age, Sebastien was diagnosed with autistic affect (likely to have autism). He made no eye contact, did not point and was prone to meltdowns like screaming and crying hysterically.
“To this day, he is what I would describe as moderately autistic, with significant delays in verbal communication and academic learning. He is a hands-on learner,” she says.
Today Sebastien is 22, and living on his own in Bali. Mummy Kah Ying shares her journey with us, and how shifting Sebastien from Singapore to Bali helped him cope with his autism better.
Raising a Child with Autism in Singapore
To start off Kah Ying takes us back to when Sebastien was younger.
She tells us, “From his diagnosis until he was eight years old, we were living in the U.S. He had a lot of services that were fully paid for by the Californian government: early intervention programme, special education programme, speech therapy (once a week), occupational therapy (once a week), behavioural therapy (once a week), social skills therapy.
“While he always went to a school, speech therapy was stopped because it was not particularly effective with him. Behavioural and social skills therapy were discontinued due to the lack of funding. Occupational therapy was gone when we moved to another city.
“Throughout this period, I was often frustrated by the learning that Sebastien received. Even though on paper, he was supposed to have an individualised learning programme, the teacher and assistants were never able to deliver on this because they were outnumbered in terms of teacher-student ratio.
“I was often dismayed by the work that Sebastien was given, which was either academically too hard or boring for him.
“So when we moved to Singapore, I decided to homeschool him. I designed a life-based curriculum with events from his life so that he could associate with the literacy and numeracy tasks.”
Kah Ying decided that she would focus more on life skills as that would help him be more independent later on in life.
“When he turned 13, I began to shift towards having him pick up life skills. This was when I started teaching him to cook his own food, fold the laundry, and sweep the floor.
“He was also introduced to exercise like yoga, functional training, and inline skating (as it turns out, he has a natural sense of balance and is very good at it… He speedskates).”
Real Reason for Moving to Bali
We asked Kah Ying what actually prompted the shift to Bali, and why “Bali”?
She reveals that Sebastien always had behavioural issues. “Between the ages of five and eight, Sebastien would hit me and others when he got angry, frustrated, or didn’t get his way,” she says.
“I used behavioural modification, a system of rewards and consequences (denial of rewards) like daily outings, to manage his behaviour. So from ages 8 to 13, Sebastien was largely compliant. It was easy for me to take him around and he would obey my instructions.”
Things changed for the worse when Sebastien entered his teens.
“From the ages of 15 to 20, Sebastien underwent a dramatic transformation (triggered by puberty). He no longer wanted to listen to what I asked him to do or follow any of my rules.
“Instead, he would hit me by pouncing on me (whether at home or in public). He engaged in bizarre behaviours during the first phase like kneading his penis all day long (so one hand was permanently engaged), pulled out eyebrows, soiled his underwear (with poop on purpose), and bed-wetting.
“If I tried to stop him, he would attack me. As his meltdowns became increasingly frightening as he grew older, with me as his principal target of his distress, I feared for my life.
“The next phase, he just seemed to be stressed out all the time. If a lightbulb wasn’t working, he could go ballistic. If a seatbelt in a vehicle wasn’t available for use and you couldn’t pull it out, he would attack you.
“It seemed as though he needed life to go right; otherwise, he would just be stressed out. This was his head-banging started – he would bang his head with his fists so hard that he left red marks when he became anxious and unhappy.
“Everyday, when I interacted with him, I never knew when or where meltdowns might occur — in the house, in public, in a car. At that point of time, I even stopped taking buses and the MRT fearing the worst…
“When he was aggressive at 15 years old, I could still put up a fight. But he was considerably stronger than me by the time he was 19. He would pounce on me and I would fall back to hit the floor or against the wall. I began to think that one of these days, he might accidentally kill me.”
Move to Bali
“We didn’t specifically plan to move Sebastien to Bali. In fact, it was the third place we checked.”
“The original idea came in the form of an experienced carer offering to take care of Sebastien in her rural hometown. The idea had appealed to me because I had always felt that Sebastien needed quiet natural surroundings — the very opposite of Singapore.
“I had seen him in such a setting once (on an island in Indonesia) and I was amazed at how peaceful he looked. But I didn’t know how I could provide him with such an environment.
“Anyway, it didn’t work out with the original carer. By the time we decided to go with Bali, it was Sebastien who actually gave his blessings for wanting to move there after our initial visit.
“The impetus to move was also triggered by our increasingly stressful lifestyle. Also, importantly, this move would also be a transition for Sebastien into young adulthood.
“For the last ten years, as I had been homeschooling him, I had been his primary carer. I didn’t even know if anyone else could take my place, other than my husband.
“With Sebastien’s increasing unhappiness that was directed at me, I also recognised the need to create a space for Sebastien to grow up without his dependence on me to make him feel better. The separation was necessary as part of this transition.”
How Life in Bali Changed Her Son…
How did moving to Bali help Sebastien? Did the whole family shift to Bali?
“We only moved Sebastien to Bali. For the first 10 months, I shuttled between Bali and Singapore, staying for two weeks in each place.”
“After that, my husband (IT Professional Jerome Poudevigne) and I visit him once every two months, either to take him out of Indonesia for longer holidays, or short weekends in Bali, based on our work schedule.”
Today, with the support of carers and Sari Hati School, a free special needs school for the poor in Bali, Sebastien is progressing towards a happier life.
“Through Sari Hati School, Sebastien has been embraced by a large school community with 30+ special need students ranging from preschool age to adults in their 40s.
“The staff, which includes parents of the kids and villagers, adopt a loving and non-judgmental attitude towards the students. Their focus is on cultivating the overall well-being of the students and promoting the values of love and harmony, instead of pushing the students to perform.
“At the same time, the students receive a holistic education that includes life skills, yoga, meditation, arts and crafts, and social outings.
“Although Sebastien has had a few head-banging and aggression episodes at school, the staff is not afraid of him. They are even willing to guide him in tasks like constructing a chair or a table in which Sebastien is given a hammer and saw to work with.
“It has been two years since we moved Sebastien to Bali. His sleep patterns have become healthy: he goes at to bed at nine pm and wakes up at six am. In Singapore, there would be nights when he didn’t sleep at all and he would not go to bed before midnight.
“He has come to establish strong relationships with his two carers and fellow students at Sari Hati School. So his exposure to the community has become far wider. For me, it is very moving to have encountered my carers who genuinely love Sebastien like he is family.
“Moving to Bali also led to our chance encounter with an Italian psychologist who was holidaying there. He helped us to understand why Sebastien was exploding so much and introduced us to approaches including surfing and swimming pool therapy for regulating his emotions.
“Living in Bali has also given him frequent exposure to nature: he goes for his surfing therapy and hiking once a week. In Bali, Sebastien has been living amidst rice paddies, which has given him more of a natural environment than Singapore.
“Sebastien still has his good days and bad days. Life in Bali, where he lives, with the elements such as the rains and the electricity outages, can be stressful. He is also interacting with others who may not always understand him. He is growing up and being conscious of how he wants things to be. So he is still going through a lot…”
Kah Ying, who is a writer, copy editor, and English teacher, now runs a social enterprise called A Mother’s Wish.
“My husband and I were inspired to set up A Mother’s Wish (www.amotherswish.com.sg) because of our concern for Sebastien’s future.
“When I look at the special needs scene, not only in Singapore, but also around the world, the most attention is given to special needs youths and adults who are able to work and generate an income.
“However, those like Sebastien who have behavioural challenges are relegated to the periphery and families of such children have to grapple with their stress of raising their children on their own. I felt very alone when I was struggling with Sebastien in Singapore.
“With A Mother’s Wish, we wanted to highlight the importance for institutions to recognise the need to offer a life of dignity to ALL special needs youths and adults, even those who cannot go out into mainstream society to work and require lifelong support.
“Thus, we have created a AMW e-commerce website in the hope of generating a sustainable source of revenue for Sebastien and effective programmes targeted at helping learners with challenging intellectual disabilities requiring lifelong support.”
Some of the items for sale include paintings by Sebastien, along with scarves and shawls derived from his paintings.
“Thus, Sebastien is able to tap into his own talent to contribute his own future.
“Apart from Sebastien’s works, e-sentence and story templates I have designed, inspired from my homeschooling journey with Sebastien, are also available. They are targeted at special needs learners with moderate to severe learning difficulties.
“As a first step, funds will be disbursed when we have generated profits of SGD5,000, with half going to Sari Hati School — a free special needs school for the poor in Ubud, Bali, and the remainder to a nominated programme in Singapore or in the region.
“Funds may be disbursed earlier if we receive emergency appeals from autism organisations in the region.”
What Needs to Change in Singapore
Does Singapore need to incorporate more changes when it comes to dealing with special needs kids?
Kah Ying opines, “Most importantly, the Singapore government needs to support families of special needs kids by ensuring that all of them have equal and affordable access to education and therapy services. As I wrote earlier, such services are free in the U.S.
“With Singapore’s rigid adherence to a meritocratic culture, parents of special needs kids and special needs schools face the pressure of cultivating special needs kids who can work.
“However, this kind of thinking fails to take into account that such an approach neglects the emotional component of autistic people.
“While you may be able to help autistic individuals who are mild-mannered and can tolerate a lot of external instruction, you end up excluding the autistic youths and adults who may not be able to cope with these expectations.
“Thus, we need professionals and an environment inside schools and institutions, who can pay attention to this aspect.
“Different kinds of activities, beyond those that could generate an income, should be offered to cater to their overall well-being. These elements should be addressed before they become stressed out youth and adults with the tendency to lash out in frustration and anger.”
Advice for Parents of Special Needs Children
Lastly, after going through so much in life, Kah Ying gives advice for parents of special needs children.
She says, “Do not focus on ‘fixing’ your child. This makes you see your child as a cluster of deficits. See your child as a whole person.
“Adopt strategies that focus on the emotional well-being of your children.
“Be willing to be unconventional in interacting with your child. When your child is engaging in unconventional behaviour, don’t just try to stop it, explore it and see what function it serves.
“ You could join him/her first and then gradually modify it and see whether your child would join in. This is a way for you to relate and establish a connection with your child. These interactions are important for building a relationship.”
Thank you so much, Kah Ying for sharing your journey with us. We’re sure it will help many parents who are challenged every day by the pressures of raising special needs kids.
As Kah Ying puts it so well, “We parents of special needs children often feel obligated to ‘save’ our children. However, as they grow older, especially into young adulthood, you may need to figure out how you can help them to grow up and let them go.”
More Info: sg.theasianparent.com