Real Life: Parenting a Child with Autism

Connie and her husband, Max share their story on loving a child with autism.

WORDS CHRISTEL GERALYN GOMES

 

The first time Connie Wong and her husband Max watched the movie ‘Rain Man’, they loved it. Years down the road, after having two boys of their own, Givens and his older brother Mark (not his real name), re-watching the movie became a totally different experience.

 

“We couldn't bring ourselves to finish it that second time,” said Connie. “There’s a scene where Raymond, played by Dustin Hoffman, refuses to board the plane because he had read about a plane crash. When his brother – played by Tom Cruise – insists, Raymond has a meltdown, banging his hand against his head. That's when my husband cried and could not continue because, at the time, our son Givens was doing the same thing, hitting his head when stressed.”

 

Diagnosing the Issue

Givens, now eighteen, has autism, a neurological condition characterised by a lack of communication and social skills. He only began displaying symptoms when he passed the age of two, his mother, Connie, explains. “When he was younger, he could look into camera and smile. But at two, he began not to respond when we called his name. There is no eye contact when we talk to him. If he was playing on the computer and I said, ‘Daddy's going to work, say bye bye’, we would get no response. We thought he had a hearing problem and brought him for testing. When we went to the park, other children would run and play but he would just sit on my helper's lap and watch.”

 

Everyday Frustrations

As Givens grew older, other challenges arose. Repetitive behaviour – typical in individuals with autism – would drive his brother to frustration. Connie says, “While watching ‘Top Gear’ on YouTube, he would replay the presenter saying ‘This is a car like no other’, countless times. He will only stop when Mark shouts at him or when we ask him to, but he will eventually go back to the same scene.”

 

As Givens grew, the family had to make some difficult but necessary adjustments to accommodate his needs. “It was manageable when he was younger, with me spending a lot of time with him – taking him to his therapy sessions and doctor's appointments and practising at home what he has learnt. I was selling insurance then and my sales dropped… so did my income. It was a double whammy as his therapy sessions were very costly. We were doing speech and occupational therapy and also trying alternative treatments such as testing his allergies and avoiding food that wasn't good for him. We put ourselves on a gluten-free diet and ate only organic food. We also tried acupuncture, which really freaked him out.”

 

Teenage Angst

Even the challenges of his early years did not prepare the family for what it would be like when Givens went through puberty.

 

 

With most children, many parents find their teenage years

to be the most trying. With a special needs child, hormonal changes

and the inability to communicate difficult feelings can

manifest in intense and exhausting ways.

 

 

For Connie, the years when Givens was thirteen through seventeen were the hardest. “Nothing prepared us for it. He was crying almost every night from 3am to 6am. It was even more stressful because his brother was doing his ‘O’ levels. There would be nights when after studying, Mark went to bed way past midnight only to be woken up by Givens' screaming and crying. Two years on he was still crying almost every day but thankfully, only for an hour.”

 

This was not all Connie dealt with. “He started to throw things out of the window. We stayed on the fifteenth floor and we’re thankful no one got hit. He’s thrown things like the TV remote control, toothbrushes, phones, the iPad, T-shirts and similar things. Since he could not stop throwing, we prepared tissue paper for him to throw, which he did, one piece at a time. Sometimes he would throw the whole box down. We had to go downstairs to pick up the paper and to knock on neighbours doors to retrieve the t-shirts that hung on their windows. Once I went downstairs at 2am to pick up tissues, and I misjudged the depth of a drain that some of the papers were in and fell. I had to go to A&E for stitches.”

 

 

Givens also developed a habit of spitting all over the place.

“We had to wipe the saliva off the floor, or he might step on it and slip.

This was an almost daily affair: crying, throwing and spitting.”

 

 

This stopped when he was 18. “I thank God this day came sooner rather than later. We are now able to have a good night's rest and peace in the house."

 

It Wasn’t All Bad

Connie is thankful that Givens did not display a number of typical traits that children with ASD have. “He is relatively comfortable with unfamiliar faces and surroundings, which has made going out easier. He is also good at phonics, which surprised all of us. It allowed him to read, even if initially he didn’t quite understand what he was reading. He's also very good with his hands, moulding art pieces with jumping clay, which we help him sell on Carousell.”

 

A Need for Public Compassion

Connie is a firm believer that her beautiful boy should be treated just like any other child.

 

 

She refuses to keep him in the house, even though many people have the opinion that since he is likely

to cause a scene in public, he should be left at home. But what kind of life is that for a human being?

 

 

Connie says, “Givens is an outdoor person. He loves open spaces, the beach and also enjoys playing at the arcade occasionally. His favourite eating place is McDonald's. He also enjoys watching movies and staying in hotels. He will request for places to go and we treat him like a typical child and bring him there.”

 

While Connie has certainly come across some very unkind people, she remains grateful that her experiences with people in public have mostly been pleasant. For example, “Once we had to pin him to the ground because he wanted to remove his clothes. It was drizzling and a kind lady sheltered us with her umbrella. There was another incident where he threw a tantrum while in the queue at McDonald's. The lady at the front kindly gestured for us to move to the front of the queue. Yet another time, he started crying while cycling. When he settled down, we decided to walk home but we were wondering what to do with our two bikes when a lady came and offered to transport the bikes back in her SUV.” Connie relies on the kindness of strangers in situations like these, which make all the difference in the world.

 

Givens Today

Today, Givens has just graduated from Eden Special School and his parents have hired a job coach, Gregory Gomes, who works with special needs young adults, to help him transition into working life. “We felt it will be good for him to have a professional to guide him and instil the right work discipline, values and ethics in a working environment. We have seen improvements in how he interacts with people. He is starting to have more eye contact, and he is speaking in short sentences rather than in one or two words. Our goal is for him to be independent and happy in what he's doing,” says Connie. Givens now does data entry for a few hours three times a week, and on other days, Connie takes him to the park. He does his artwork and also helps with household chores.

 

“As we do not have a helper now, one of us needs to be with him always, so my hubby and I don't go out together as a couple unless he comes along. I missed my elder son's Polytechnic graduation ceremony and will probably miss his enlistment in April as we have no one to look after him,” Connie says.

 

 

While there have been immense challenges, watching Givens

improve brings Connie such incredible joy.

 

 

As a mother, she has hope and a vision of an independent Givens who has friends and is happy making and selling his art pieces. His art can be found by searching for ‘givensgift’ on Carousell.

 

In parting, Connie says, “ASD children need more help than other children and there's no reason to be afraid of them. It is important that they are portrayed as having their own needs just like everyone, and even more important that they be actively included in society.”

Thanks for sharing!