From NST Family

By Zuhaila Sedek
21st Oct 2012

THERE’S ALWAYS HOPE
Jonathan was a smart, lovable baby who learned to speak fairly early. He was bilingual, and spoke English and Mandarin fluently from the age of 1. By the time he was 3, he could answer questions diligently.

“Once, we asked him, ‘Is daddy handsome?’ He answered ‘yes’ and to the question, ‘Is mummy handsome?’, he said ‘No, gorgeous,’. We named our house Gorgeous to commemorate the incident,” recalls Roselind Wee, somewhat wistfully.

Then their idyll was shattered. Their beloved son, who aspired to be an astronaut, suddenly had a complete loss of speech. He was 5. “We had great hopes for him,” says Wee, a senior lecturer with UiTM Sarawak.

“Little did we know that our dreams would be shattered and heartaches were in store. We didn’t understand how our intelligent child could suddenly become mute.” Jonathan, it seems, had developed late onset autism. “He was growing fine until age 5 when he regressed and totally lost his speech.

It was at about the same time that I was pregnant with my daughter. At first, we thought he was just acting up,” says Wee. Her daughter is now 14. “His last words were spoken at about that time. I can still remember what he said. It was, ‘Why, why did the baby come into the picture?’. We thought Jonathan was jealous of his sister.”

FINDING A SOLUTION

Wee and her husband, Charles, initially thought that their son’s behaviour was due to his inability to cope with the changes in his life. He became hyperactive and was expelled from various playschools, nurseries and kindergartens.

“When Jonathan could not adjust to the various nurseries, we decided to find out what was wrong with him. We took him from one doctor to another,” says Wee. The couple tried all kinds of methods to “cure” him — reflexology, acupuncture, coffee enema, but to no avail. They even brought him to Kuala Lumpur for a hearing test.

“It was there that someone introduced us to a psychologist who finally told us our son was mildly autistic,” says Wee. “At that time, my husband and I didn’t have a clue what autism meant. We had to surf the Internet for information. In the 1990s not much was known about autism. In Sarawak, we had no one to turn to,” says Wee.

She decided to take six months half-paid leave but was still unsure about what to do with Jonathan. “Then, together with another family in Sarawak, as well as a few in KL, we arranged for an Applied Behaviour Analysis consultant from America to fly in to Kuching (three times) to give Jonathan an individualised programme.

We had read studies that showed that ABA helped towards the recovery of some autistic kids.” Suddenly there was hope even though it would be costly to bring in the consultant (the group paid for air ticket, hotel accommodation and the therapy sessions in US dollars).

“With this programme, Jonathan did regain some of his lost speech. But his progress was slow and teaching him was laborious,” recalls Wee. “We hired private tutors to teach him and I tried to do the programme myself. Having a full-time job and teaching him wasn’t easy and I got stressed out. Eventually, I gave up as I developed high blood pressure.”

HUGE CHALLENGES

Jonathan’s autism has definitely taken a toll on the family. Wee says: “We can’t have a normal family life. We can’t take off for holidays anytime we like. Whenever we want to go somewhere, we need to plan really well as we need to engage the help of other family members.”

In his teenage years, Jonathan also developed epilepsy. He had epileptic fits twice and on one occasion, three of his teeth got stuck in his gum when he fell, says Wee. “We rushed him to the Accident And Emergency section at the General Hospital. A dentist had to be called in to pull out his teeth from his gum. He suffered so much and we could only watch in agony.”

The couple’s social life has also taken a huge dip, says Wee, author of several books on autism. “It’s not easy for us to go out with friends when we have to bring him. Inviting people over to our place is also not convenient. Jonathan is on a gluten casein-free diet so we have to be vigilant with his food.” As a result, the family has not celebrated Chinese New Year for many years “...because we want to control his diet”.

These days, they go on holiday during the festival just so he can keep to his diet. Bringing up an autistic child isn’t easy, reiterates Wee. “We have to sacrifice our time and exercise utmost patience. Financially, it is draining.

We need to get special services for him. For example, he cannot use the school bus like other children. We have to hire someone to drive him. He also has to go on special diets and supplements. It’s a lifelong commitment.”

SARAWAK AUTISTIC ASSOCIATION

Driven by a common cause, Wee, her husband, and two other families in the same predicament, employed a teacher and funded her training at the National Autism Society Malaysia (NASOM) for a month so that she’d return to teach their children. The three families were responsible for initiating the first autistic class in Sarawak, which eventually grew to become the autistic centre that was subsequently absorbed by the Sarawak Autistic Association.

“The autistic class existed before the association because of the desperate need to have a place to put our children,” says Wee. “Now, the autistic children and their families have benefited from this and in many ways, they’re lucky.” At the same time, Wee and her husband got together a group of parents and started the Sarawak Autistic Association.

“For more than six years, I was the founding president and my husband, the vice-president. Having to take care of Jonathan and my daughter as well as holding a full-time job was very taxing.”

Eventually the couple decided it wasn’t possible for both of them to be actively involved in the association as their home life needed their attention too. “My husband is still the vice-president and I am involved in other sub-committees for the association.”

RAY OF HOPE

Jonathan’s condition has improved, says Wee. Two years ago, he was able to travel with the family to Bandung and Jakarta. It was his first plane flight after many, many, years. “Since Jonathan’s regression, we’ve never stopped trying new things,” says Wee.

“The latest is biomedical treatment and it has helped Jonathan to improve. This is motivation enough.” Wistfully, she continues: “We bought special shoes for him to correct his posture. He used to swing his body and walked like a gorilla. Now he can walk normally.

He used to throw tantrums and was aggressive but now he’s good natured. In the past, he would get lost often but now we can bring him out dining or shopping. He’s more settled and can sit through a meal. He helps us to carry things when we go shopping. He’s manageable now and that’s a great improvement.” More stories on caring for autistic kids at www.about.autism.com

Read more: FAMILY: Not the end of the world - Sunday Life & Times - New Straits Times http://www.nst.com.my/life-times/sunday-life-times...