Club provides moral support to parents

Understanding your child's challenges is a difficult thing for any parent, but finding our that a son or daughter is not keeping up with other students is especially troubling.

Every parent wants to help their kids as much as possible, but many are lost when it comes to dealing with learning disabilities, autism and mental health problems. Doctors and health professionals are still learning a lot about these conditions, so it's no surprise that many parents are confused and desperate to find out more about their child's affliction.

Like other parents that have shared the experience, Dr. Sidhi was shocked to discover that his preschool-aged son, Hari, was not developing the way other kids were. When the boy was five years old, he took him to Singapore, where Hari was diagnosed with brain damage and Attention Deficit Hyperactive Disorder (ADHD).

Sidhi sought information about his son's problem so that he could know how to help him, but there were very few resources available for parents at the time in the mid-1980s, and pretty well none in Indonesian, he said.

As a doctor, Sidhi was able to access English-language medical textbooks, but they mostly dealt with diagnoses and medical treatment. He was concerned with parenting issues.

Sidhi and his wife not only felt lost sometimes when trying to help their son, but very alone, as they did not know anyone else sharing their situation.

Three years ago, Sidhi and some other like-minded parents started what would become Club AABB, a support group for children and adults with special needs.

Even though his son is now in his late 20s, he wanted to help establish a support group that he'd wished he had when his son was growing up.

For eight months, Club AABB, whose mission is to provide support, information and resources for parents, has published a bimonthly newsletter and every two months invites a mental health professional to speak and address concerns of the group.

Arifin Mohammed, who is secretary of Club AABB and has an 11- year-old son with dyslexia, says that he and his wife often felt lost and alone when trying to determine what was best for his son.

"I didn't always know what the right treatment was and we would often get different opinions from doctors," he said.

It's a common complaint, and concern, among people that came to hear Dr. Vitriani Sumarlis, a child psychologist, speak about autism at a seminar earlier this month in Jakarta. But club organizers are clear that they are not experts, and concentrate on providing support and resources aimed more at parenting than medical diagnosis.

Maya Soferina attended the meeting after learning about Club AABB from her brother-in-law's cousin. She has a nine-year-old son with autism, and wanted to find out more about his condition.

"I really felt alone, whether I was trying to find information, or just deal with everyday challenges, and I had no idea that this sort of group existed," said Maya.

Sidhi said that parents do know more about ADHD and other special needs now, and that more literature, some of which is in Indonesian and some of which specifically addresses parenting, was available to parents.

But the most important thing that the club was trying to build was a network of sharing, he said, for parents need support and guidance just as much as their kids.

Club AABB can be reached at tel. 7203213.

-- Jock Paul