One Voice May 2010

Empowering parents of children with autism5 May 2010
By ANTHONY MIRANTI

MY wife Intan had noticed for many months that our two-year-old was not developing normally. For me, I was not in a state of denial; I just did not recognise that anything was wrong. Intan was worried that our boy did not seem to understand any language, was unable or unwilling to look at a person’s face, and played with toys by lining them up or by spinning their wheels. She fretted that our son was not bonding with any of us, and that he screamed uncontrollably for hours over noises or situations he could not control.

I just thought he had unique ways of expressing himself. Intan was convinced that something was wrong, and did extensive research. She talked to people, read whatever materials she could find, and surfed the Internet for information. It was a good thing she did so because it eventually led to an accurate but heart-breaking diagnosis back in April 2001. That initial diagnosis of autism was later confirmed by two other professionals in the United States.

During those early days, the predominant feelings we had were fear and helplessness. We feared for his future, and we felt helpless, not knowing what to do. To my wife’s credit, instead of running away from reality, she faced it head-on. “I was heart-broken but I got down to work,” said Intan. She talked to other parents, read books and research articles, explored interventions, signed up for training and joined autism online discussion groups.

With research comes knowledge. Knowledge leads to making better treatment choices, which results in better progress and growth in a child with autism. There’s a parallel change in the parent. With research comes knowledge. With knowledge, comes understanding and empowerment. With each bit of knowledge gained, helplessness dissipates, and is replaced by hope and joy. Fear is kept at bay. Things are very much different for us now. After nine years, our son is very different, and my wife and I are, too. I am grateful to all the people who have helped him along the way, and to those who still do.

However, I believe that my son’s progress would have been less pronounced were it not for my wife’s desire to empower herself with enough knowledge to keep the family moving forward. In 2005, my wife decided to help other parents of children with autism to empower themselves. Through an organisation named ANDI Initiative, we provide several avenues for parents to arm themselves with knowledge. We have a collection of autism-related books available for loan to parents of children with special needs. Many of these books are not available in local bookstores. Parents do not have to pay to use this service.

Another service is the Parent Voices Support Group where parents come to share and learn from each other. Parents have provided feedback on the ANDI Initiative blog. In addition, ANDI Initiative also helps parents gain more knowledge by collaborating with experts to offer training and workshops.Chan Wai Ling, a parent of an autistic child, has this to share: “Before I went through the half-year training, my child was non-verbal, unresponsive and had no eye contact. The training empowered me to be a ‘parent-therapist’.

“The programme emphasised on play as a means of bonding and earning my child’s trust. This was followed by using play to motivate him, and later to give him confidence. And for the first time, my son experienced joy instead of being trapped in his own world where no one could reach him. “The therapy methods created an interactive relationship,” added Chan. “Now my son enjoys his time-table, knowing he’s able to learn and achieve through his efforts and he gets reinforcement, too. Even his tantrums are meaningful now as we are able to decipher them through the training programme. “The parent training session took us on a journey of self-discovery. It enabled me to be a better parent. After four months, my child was able to verbalise, had imitation skills, had eye contact, was affectionate and spontaneous, and was joyful. Now I know there are strategies I can employ to help my child. I am empowered knowing that I have a direct impact on my child’s development,” said Chan, a participant in a training programme for parents, which is now called the ASD Parent Training and Support Series.

Haslinda Abdul Rahman, another participant, echoes Chan’s sentiments. “The training helped me to communicate with my son effectively. In return, he is able to relate to me in a sensible way. Introducing a new routine is no longer a struggle. The training also helped me to set appropriate expectations of him. This in turn makes me less stressed and allows me to cherish every achievement of his. “After picking up skills from the parent training sessions, I am better equipped to plan programmes to suit my child’s needs. Seeing my child’s progress makes us realise that he has potential, and a brighter future ahead,” added Haslinda. The parent plays a crucial role in any intervention programme for an autistic child. There is more to be said about empowering the parent of a child with autism, but my now 11-year-old son is waiting to play with me. And he’s been very patient.

> To find out more about ANDI Initiative, go to ANDIInitiative.blogs pot.com, or find us on Facebook. You can also contact us by sending an e-mail to ANDI.Initiative@gmail.com.One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com. For enquiries of services and support groups, please call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: onevoice4ld@gmail.com.