Parents take charge
The Malaysian mother of a child with autism works closely with a local council in London to improve the quality of life for special needs children.
THE teacher’s instruction was straightforward enough: “Go wash your hands in the toilet.” However, to then-three-year-old Naresh, that request did not register in his mind. Instead, it caused a huge outburst.
“At home, the toilet was a place where he eased himself. So when the teacher told him to ‘wash his hands in the toilet,’ he freaked out and threw an absolute tantrum,” recalls his mother Manjula Nithiananthan of the incident that happened two years ago.
“The teachers at the nursery could not calm him down and I had to go there, hold him firmly and reassure him that everything was all right.”
Naresh, the younger of her two boys, had just started nursery school in London then, and was not yet diagnosed with the autism spectrum, also known as autism spectrum conditions or disorders (ASDs). (According to the website of the US-based Centers For Disease Control And Prevention, ASDs are “a group of developmental disabilities that can cause significant social, communication and behavioural challenges”.)
“Children with autism take language very literally,” explains the Alor Setar-born Manjula, who has been living in Britain for almost a decade and is actively involved in the parental movement for special needs children.
The mother-of-two admits that it took her family some time before they realised and accepted Naresh’s condition.
“For a long time I was not aware of his condition ... I was busy ignoring the signals, as it is never easy to acknowledge that your child has problem,” she says candidly.
It was only when he was four that they decided to do some tests, which put him on the autistic spectrum as a “high-functioning autistic” (a child who has a high level of skills and abilities, and can function in society, given the right coaching and support),
Now five, Naresh is studying in a mainstream school in Barnet, North London. There are 32 children in his class and he has a dedicated teacher’s aid.
“Looking back, I wished I had known earlier what I know now so as to intervene sooner. Having re-learnt my parenting style and working with my husband, we are slowly learning what the world looks like from his eyes,” says the 46-year-old who grew up in Kuala Lumpur.
Following her son’s diagnosis, Manjula began to make it her aim to spread awareness of autism and how parents can make a big impact on their child’s life by becoming the child’s expert.
She not only sits on a parent partnership advisory committee with a local council in the British capital, she also volunteers at a special school for children with autism. Apart from that, she is a member of the Parent-carers Participation For Disabilities And Additional Needs Barnet (PP4Dan Barnet), a non-governmental organisation for children with special needs.
Manjula was back in KL in August to hold two workshops for parents on how to cope with the challenges of autism in the family.
“Parents need to be very alert to their own child’s behaviour and understand what works best for him or her. You are the child’s expert. If behavioural experts tell you something you feel will not work with your child, don’t be afraid to tell them. You know far more than you think you do, so trust your instincts,” she emphasises during our meeting in KL a few days after the workshop. Accompanying her were her husband and their two kids.
“We also know a couple of parents back in London who do not feel confident enough to deal with their child and hire the right people to work with the child, which is perfectly fine; but you need to be in control.”
Build on strengths
Manjula points out that a commonmon issue about autism is that the medical perspective tends to offer a prognosis but not consider the positive influences, behaviour modifica-modification and strategies that a child is exposed to.
Her advice to parents? Use your child’s strengths to enhance areas he or she is weak in.
“For example, if your child is good at reading, then use language to teach him maths,” says Manjula.
Another important aspect in raising children with autism is regulating their emotions.
“One reason children have behavioural issues is that they are stressed out and don’t know how to deal with it. Autism is so complex and there could be a number of triggers that cause a child to stop speaking, or continue speaking, or behave in a certain way,” she says.
Manjula, whose other son Dinish is aged six, advises parents to keep a diary of their child’s behaviours and tantrums at different times, places and situations.
Some aspects of autism will need treatment, others management, or adaptation, respect and acceptance. As the child grows, depending on the support and influence of their parents or carers, and the environment, strategies can be built around the child’s areas of strength to effectively help in his or her thinking patterns.
“What is important is early intervention, patience, buckets of love for all – the child and you – and family support,” says the energy therapist who teaches Thetahealing, a technique that focuses on thought and prayer to create physical and emotional healing.
In Britain, early intervention is given much emphasis and local councils play a big part in supporting children and parents, says Manjula.
“There is a specific children’s service section under each local council and it gives support by providing teachers, early intervention programmes, social workers and so on.”
Along with that are various charities and parent-carer networks that not only support parents but also play an active part in changing policies and practices that are no longer relevant.
“There are also a lot of play-related activities that help children build confidence in social settings,” she adds.
After graduating with an MBA from the United States’ Lindenwood University in Missouri in the mid-1990s, Manjula returned to Malaysia and worked for a logistics company in organisational development for five years.
She then took a break and went to visit a friend in London. It was there that she met her future husband, Mohd Salim Jamaluddin, now a senior executive with a Malaysian banking group in the city. Manjula moved to Britain in 2002 when they got married and she soon landed a job as a human resource strategy officer with a local authority in North London, where she worked until 2009.
In January last year, she started her own human resource consultancy firm, round about the same time Naresh got his diagnosis.
“Naresh is an amazing kid who learnt strategies to cope so his condition was never picked up until he was about three,” she says, adding that the lad is actually a few years ahead in terms of his reading skills.
“We have fun learning and discovering new things with lots of praise and hugs. We, as a family, are learning from him as much as he is learning from us,” says Manjula, who calls her husband the anchor in her life.
“We just need to follow Naresh’s rhythm, flow and direction. He is very observant and constantly surprises us with the many details he sees in things.”
Manjula is constantly encouraged and inspired by parents who work tirelessly to create a conducive growing and learning environment for their children with ASDs.
“That gives me a lot of hope for my child and gets me out of any negative thinking that my child is going to be disabled. It reassures me that all I can do for him is give him the right tools and guidance,” says Manjula, who hopes to pursue a diploma in childcare in the near future. “Looking ahead, I know it will be a long road but we are determined to make the most of it and have as much fun along the way teaching each other the need and strength of diversity.” n For further details, e-mail manjula.nithi@ btinternet.com.