When her two sons were young, life was a guessing game for June Lim. “I had to do everything for them, like showering, feeding them their meals, changing their clothes, brushing their teeth. And it took a lot of guessing on my side to know what they wanted or what was upsetting them,” the 45-year-old housewife recalled. But “things are easier now that they are more verbal and are able to tell me what they want.”
Sounds like an experience that every parent goes though wth their child? It is. The main difference? June’s sons and 19 and 20 years old, and both have autism. If you watched The Purple Parade concert last Saturday, you will have seen one of them onscreen. Royce, the earnest young man playing the cello in the ‘Signing Hands’ music video, is June’s firstborn, and a trainee at the APSN Centre for Adults. His younger brother, Dylan, attends Eden Day Activity Centre.
While there is increased understanding about autism these days, it was a very different climate two decades ago when the boys were young. Bringing them out was hard, June recalled, as people in general did not understand their behaviour. “I got a lot of dirty looks and they received derogatory remarks from their peers.”
One time, June brought the boys to a playground, where there was a group of children their age playing. Royce and Dylan were amused when they saw the children playing catching. So they started laughing. When the other children saw the boys laughing, they started shouting at them: “You are crazy! You have something wrong!”.
“Their parents who were nearby saw the whole thing, and instead of stopping their children, were pointing at my sons and whispering among themselves,” said June, who tells us more what it is like to bring up two boys with autism, in Singapore.
What is the biggest misconception that people have about those with autism?
That people with autism are violent people, they don’t communicate at all, they cannot understand anything at all, cannot talk. Insurance companies think it’s an illness. Some people will take a step back the moment they hear me mention the word ‘autism’ because they think it’s contagious!
People with autism are just like you and me. Some of them love to interact with people too! They also crave friendship and long to be included, but are hindered by their communication abilities. Thus misunderstandings happen.
What did you think that Royce could have autism?
Even at two years old, Royce did not speak. He could only call out “mummy” and “daddy”. We went to a few doctors and were told that it was probably speech delay. I was told to wait and see. It was later that we finally got him diagnosed.
I was so sad I cried for a long time. Every time I thought about how my son was going to cope with autism for the rest of his life, I would weep. I couldn’t function well for a few months after his diagnosis. I questioned myself all the time, hoping to find out all the whys and maybe to find that one reason to put the blame on.
But eventually I came around and decided it was more important to help my son than to dwell on something that I could not change.
Was it the same for Dylan?
Dylan had quite a bit of behavioural issues since he was a baby. He would cry for hours and was difficult to calm down. It was during Royce’s diagnosis that I suspected that Dylan could be on the spectrum as well.
I was depressed to know that both sons are autistic. Dylan’s behaviour issues are very different from Royce’s, hence taking care of him is more challenging. Dylan will have meltdowns for hours, and he doesn’t respond or look at me when I call out to him.
Did it make it easier for you since you already knew about autism?
Yes. After Royce’s diagnosis I read up about autism and find out about all types of methods and interventions that could be used to help them. I talked to doctors, speech therapists, occupational therapists, and special education teachers. I went to talks and seminars and had training to equip myself. Royce and Dylan are both very different. But with the knowledge I gathered, I could modify my teaching to suit them.
Do the boys get along well with each other?
They get along very well together though there are times when Royce doesn’t quite tolerate Dylan’s tantrums. But generally they help each other out, with Royce taking the lead mostly. Dylan will always sit beside Royce and watch him play games on the computer or on his Xbox. He loves Mario Brothers games, Spiderman Adventure, and any racing car game.
When we go out, Royce will help me to watch out for Dylan to make sure he follows, and stays with us. Sometimes Dylan will just walk and follow the person or people in front of him, not knowing that we may have stopped or are turning to go somewhere else. Royce will help me to pull him back or call out to him. Sometimes Dylan will also walk very close to moving cars in a carpark. Royce will watch him and call out to him to move to the side.
What was school like for them?
They both went to Eden school. They love it. The teachers are nice and patient, and the programs are tailored to their educational needs. Furthermore, there’s a lot of support given to help them learn.
How did Royce discover his talent as a cellist?
I actually wanted him to learn the piano as a hobby. But the cello at the teacher’s place caught his attention instead. In the end, the teacher thought it would be better for him to learn something that he enjoys and likes. So that’s how his cello journey began. I try to make him practise every day, and he manages about an hour daily.
Royce has always loved music. When he was a child, he loved to watch shows with songs and dance, as well as musicals. Maybe listening to loads of classical music during pregnancy may have had an effect on him. Also, both me and hubby love music, so it could be a combination of our genes too!
What does Dylan like to do?
I’m always on a lookout for activities and games that they can do independently and develop into a hobby, or something they can occupy themselves with if they are bored. I found out by chance that Dylan can sit through jigsaw puzzles. In fact he can finish them quite quickly. We started with 50-piece puzzles, and slowly moved on to larger ones. During the circuit breaker this year, he completed a 2,000-piece puzzle in one month.
Can you share your coping methods for parents who have children with autism?
My family, especially my mother, is my strongest pillar. She’s always there to help me, accompany me to doctor visits, and more. She looks after the boys when she knows I need to go for seminars and trainings.
Reading up a lot and doing my own research help me to understand more about autism and how to cope and teach.
Talking to other parents of children with autism also helps me a great deal. We share our stories, coping strategies, and any information we have regarding autism. It’s always nice to talk to these people who are in the same boat as you, as they understand too.
What’s your greatest pride in your sons?
Their willingness to learn and not give up even though I know some tasks may be difficult for them, like trying to remember all the labels or vocabulary, reading together, and learning communication and social skills. Some of these concepts are hard for them to understand and remember, but they will try to recall them, and demonstrate every time I sit down and work with them.
They also show me that I think too much at times when things or situations are actually very simple. I always question myself when they cannot learn as fast as I want them to. I wonder whether it is too difficult for them, if I am going too quickly, or teaching them too much. But all it takes is maybe a little break or a small reward to keep them going!”
Images: June Lim