Being sworn at in public and told to lock up her children at home instead of bringing them out are just some of the abuses Joyce Lim has had to contend with as the mother of two sons who have developmental impairment. Her second child Clifford Kang who is 23 years old has ADHD (Attention Deficit Hyperactivity Disorder) and her youngest child Clarence Kang who is 20 years old is autistic and has ADHD as well. “Because my sons are hyperactive, they are sometimes very loud and boisterous in public and people have scolded us because of that,” Lim says.
But playing the best game she can with the cards she is dealt with is what Joyce Lim has done with her life thus far. With three children – her eldest daughter Chermaine, now 26 years old and who is a music teacher and two sons, Clifford and Clarence, both who have developmental impairment – would have crushed any young mother who has great hopes for her offspring. For Lim, the shock that came with the discovery that her youngest child, Clarence had autism, brought her world crashing down.
“I still remember that day when the doctor told us that Clarence had autism and ADHD,” Lim says her voice dropping to a whisper. “I couldn’t speak to anyone the whole day. I felt like it was the end of the world.” All the dreams and hopes she had for Clarence were crushed in an instant in the paediatrician’s clinic.
Compounding her heartbreak was the fact that pre-diagnose, she was under the impression that her youngest son was a true genius. “At 10 months old Clarence already knew the alphabet by heart,” Lim recalls. “At one year plus he was able to read English words and at 2 plus he could read the children’s encyclopaedia … I thought he was really exceptional and way ahead of the curve.”
And it wasn’t just the written word Clarence was capable of reading. He was also able to decipher musical notes and scores and he had a photographic memory. But then at around three years of age, Lim noticed a change in her youngest son’s behaviour. “He became withdrawn and very quiet and isolated himself,” she recalls. “He seemed preoccupied and it appeared that a lot was on his mind. He started to mumble to himself and arrange his toys in a very straight order and kept staring into space for hours.”
All this brought the realisation to Lim that something was amiss. “This wasn’t like him as before he was very sociable and enjoyed playing with his siblings and other children. A visit to a hospital to undergo a multitude of tests confirmed Lim’s greatest fears. Clarencewas diagnosed with not just autism but also ADHD (Attention Deficit Hyperactivity Disorder). “At that time, I didn’t know what autism was and I was in denial,” Lim says. “I thought the doctor had made a mistake. My elder son was diagnosed with ADHD and I thought it was just another form of ADHD.”
But reality soon sunk in and Lim was quick to take action. “The specialist advised us to send Clarence to a school for special needs children. It wasn’t a school specially for autistic children as in those days there were none. It was just a school where physically and mentally challenged children were all lumped together.”
And trying to get speech therapy for Clarence at the government hospital wasn’t exactly a walk in the park as the long waiting list just to get an appointment with a speech therapist meant that essential treatment was delayed. “We had to wait for about two or three months just to get one therapy session. This really isn’t enough for any autistic child.”
And even though Lim and her husband Kang Kim Heng owned a music centre, their income level wasn’t enough to afford private health care and specialised treatment for Clarence. “Apart from speech therapy, Clarence also needed to have behavioural therapy and the waiting list was very, very long in the government hospitals. For poor and low-income families, this means their special needs children are given delayed treatment and time is of the essence as they are growing up fast.”
“My husband and I made so many personal sacrifices to get our son private treatment as time was precious and we just couldn’t wait for government assistance ... but not every parent is able to make those sacrifices,” says Lim.
Lim says early intensive intervention is essential for autistic children, and getting specialised treatment before six years old can vastly improve symptoms and conditions of the autistic child. Bearing in mind back in 2001 the internet was just at its infancy, Lim had a mammoth task in researching and seeking help for Clarence’s special needs. “It’s much easier today to search for information but you still need funds to afford all those treatments,” Lim says ruefully.
Citing organisations like Permata Kurnia and The National Autism Society of Malaysia (NASOM) which were a great help, Lim says that these NGOs still charge for treatment which the poor might find hard to pay. “Further, private institutions can charge up to RM5,000 a month for occupational therapy for autistic children.” Not exactly loose change for those in the low-income bracket. “We put Clarence in a normal school but after a year, I felt he was neglected so I changed schools. I had to constantly monitor his progress.”
However, the irony is that parents with special needs children have to work extra hard to pay for treatment for their children but because their children take up more of their time due to their condition, some find it hard to earn extra income. “This is a vicious cycle and I don’t really know the solution,” Lim says.
At 20 years old today, Clarence has come a long way from those confusing and chaotic early days. He’s won a slew of awards and has represented Malaysia at numerous competitions abroad. One of the highlights for Clarence was performing with singer Yuna at the 9th Asian Para Games and he’s even given a talk in TedX Petaling Street. He’s appeared on TV Shows internationally such as I Dream China by Zhejiang Broadcasting Television and represented Malaysia on Asia’s Got Talent 2015.
Clarence graduated with a London College of Music diploma from the University of West London this year and he also released his first CD titled Hold My Hand where Lim wrote and sang the title song and Clarence played the piano.
It is no surprise then that Lim feels proud of what Clarence has achieved despite of all the setbacks he had encountered.
While running her music centre with her husband, Lim managed to cope with the extra burden of caring for Clarence and her two other children guided by her patience and love for them. “I couldn’t be selfish and had to accept who they are ... I had to sort out all the difficulties they faced and find ways to help them. Everybody is God’s child. I believe when God gave Clarence to me, it meant I had the ability to take care of him. It gave me encouragement. That I was the chosen one. I have a mission. No matter what difficulties I face, I could overcome them.”
It is evident that Lim hasn’t always had a smooth path when it came to experiences with her children. She has encountered more rejections than she cares to mention and has faced the brunt from members of the public who are less than sympathetic. Lim says that many young autistic adults are kept at home by their families because they are not accepted by society. “This is because they can get aggressive and scream and shout and the public might have a fear of them. That is why awareness is very important.”
The one piece of advice she wishes to impart to other parents who have autistic children is to train them with life coping skills so they are independent. “It is important to teach them basic living skills like personal hygiene, how to eat and drink and behave in public. Never give up on them and as a parent of a child with autism, you have to adjust your own emotions to accept them fully as they are.”
She also says its vital for children with autism to make friends and socialise with other children, both those with autism and those without. “Clarence goes to a Youth Church group which comprise other children and he joins in for activities like badminton, swimming and going to movies. This is wonderful because he feels accepted and this helps him open up and interact with them ... I’ve never seen him so happy as when he’s with other kids.”
The gift which Lim says she found in her journey as the mother of three, two of whom are special needs children, is one which changed her for the better. “I learnt empathy and humility. As the principal of a music centre and a businesswoman, it was easy to take life for granted when business was good. If I didn’t have Clifford and Clarence I wouldn’t know what compassion is. By helping others, you are actually helping yourself because you gain so much.”