Kids just as sweet

Parents of children with autism have to grapple with the many misconceptions surrounding the condition.

YONG: “Good Morning! This is Yong. How can I help you?” Amy: “Is this Autism Support Centre?”

Yong: “This is Parents’ Resource for Autism or PR4A. Who am I speaking to?”

Amy: “My name is Amy. I want to ask about autism.”

Yong: “How can I help? Are you a parent?”

Amy: “Yes, I am a parent. I want to know why autistic kids like to beat people.”

Yong: “Amy, how old is your son?”

Amy: “Not my son, I have a daughter and she is in Year One now.”

Yong: “How is she doing in school?”

Amy: “She was beaten on the back by this autistic boy recently. The autistic boy disturbs the class and because of that, she cannot concentrate in class. I want to know if autistic people can hurt people, why they are still allowed in a normal class?”

At that particular moment I was about to give her a piece of my mind and tell her off, but after taking a deep breath and keeping my emotions in check, I started to chat with her for about 90 minutes. I am very happy to say that I have made a new friend of Amy and now she will be another spokesperson on behalf of my two sons who have autism.

Had I told her off, I would have made another enemy and she would not have a nice word for someone who has autism. As parents of children with autism, we have been in situations where we were asked or told the following: “Is autism contagious?” “Are they psychotic?” “Will he hurt people?” and “If he cannot be quiet, please stay at home. You should discipline your kid.”

Apparently the boy in Amy’s daughter’s class has autism and has been teased by his classmates. Kids will be kids. They love to play around without any bad intention. According to Amy, the boy tends to be quiet and usually cannot stand loud noise, so he uses his hand to cover up his ears. Apparently the kids in the class like to tease him because he is different. It comes to a point where he cannot take it anymore and acts to defend himself. Sadly, we only notice his act of self-defence but are blind to what he is going through.

I told Amy that kids with autism are usually victims of verbal and physical abuse. Amy admitted that her daughter likes to tease the boy too. I told Amy that from our experience, they are the sweetest boys and girls in the world. They don’t feel resentment, they don’t feel hatred and they are usually very happy to be within their own space.

Life is stressful for parents of children with autism due to the lack of awareness and public stigma. In fact, it drains the financial resources, and taxes the health and relationships of parents and siblings involved.

Some of my kind friends tried to comfort me saying, “They are going to recover”, “God has a bigger plan for you”. We, the parents, know the future of our children is not going to be so bright.

What we really want is for them to be independent in a society that can accept them for who they are. They may have some disabilities but inside them, they want to be happy and accepted by society.

The not-so-kind ones used to say, “You must have done something wrong in your past life and this is karma”. That really hurts a lot. If I have done anything wrong in my past life or even current life, I should be punished instead. The kids are innocent and should not be paying for my sin. This line of argument comes from friends who do not have much exposure to medical information and awareness about autism.

Hence, anything that is not explainable, they attribute to repercussion. I usually try my best to explain to them about the whole autism issue and hopefully they will have the awareness to help someone in future.

When someone from the medical profession like Dr Amar Singh sparked off a debate on “classical autism” versus “new autism” following an article he wrote in a local newspaper, it naturally upset parents who are trying their best to cope with the situation.

Dr Amar Singh implied that “new autism” is caused by, among other things, lack of family interaction and lack of play. He also pointed out that Chinese children predominate among the cases of “new autism” and that the parents are predominantly from the upper middle-income group that is represented by the affluent, high-flying professionals.
Let me share my side of the story.

When my wife was pregnant with our eldest son, about four weeks into the pregnancy I went to a bookstore and bought a storybook titled 365 Bedtime Stories. For each day of the year, I read the story of the day to my unborn child. On top of that, I also sang nursery rhymes almost every night to my child in his mummy’s womb.

When he was born, I was the one who bathed him every day even though my wife was a stay-at-home mother. His developmental milestones were perfect, and he even won a Baby of the Year contest in 2001.

My house is full of toys, so much so it is like a toyshop. We enrolled him for playgroup every weekend at a play centre. We brought him to the beach and played with mud and sand. Despite all the nurturing, eldest son has autism. My second son is also not spared.

From my experience, I gather that autism does not discriminate. It affects all races, rich and poor alike.

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Parenting Parent - Anger release

I LEAVE my two-year-old son in the playschool for three hours every day. He loves to bite other children. When I take him to the playground, he will attempt to bite someone too. His teacher commented that he has no friends in school, as all the children are terrified of him. My husband and I are very concerned. What should we do to break this habit? I am a working mother. – Worried Mother

Two-year-olds who are feeling frustrated and misunderstood will resort to biting when they cannot express how they feel. At this age, they are unaware of what is right or wrong. When they feel upset or insecure, they will use the only “weapon” they know to vent their feelings. He may even be biting to show his interest in the other person. He may have observed others giving each other a “love bite”.

Biting is an aggressive behaviour. It causes bodily harm to others and can also be frightening to the one who bites. The child feels powerful when he bites. Yet, this power that he has can be overwhelming. He may not be able to control it. It is up to his parents and teachers to help him manage this behaviour.

You have to find out why he is biting. It does not help much to say or do anything after he has bitten. Scolding him or punishing him may cause him to feel worse, and bite more. Some adults pound their fists on the table when they are angry or use foul language. Very young children bite when they are angry or frustrated.

Another reason could be that he finds biting arouses strong feelings in others. He may feel left out in groups of many. His biting may get him the kind of focused attention he longs for. Once you discover the reason behind his biting, you can try to prevent it before it happens.

If biting is a behaviour that is being modelled, try to remove this from the child. Help your child to learn how to use other ways to express his interest and strong feelings. For example, you can show him how he can touch someone’s hand gently and smile and say, “I like you.” You can also help him redirect his urge to bite others to objects made for biting. Tell him that people are not for biting. He can bite things like teething rings or sink his teeth into a bread roll.

Show him how he can use other means to express his anger. Observe your child carefully and know when he is about to “explode”. In other words, anticipate his moves. Distract him before his anger gets full-blown and out-of-control. If you know he is demanding for something or trying to get his message across, help him to use other means for getting what he wants. Model to him how he can use certain words or signs to let the other person know.

I used to show toddlers in group care how they can barter trade what they wanted from each other. If you want a toy that someone else is playing, you will bring along another toy to exchange for it. In the beginning, I had to constantly demonstrate the way it is done to the toddlers. I helped them to trade without fighting. Eventually, they learned how to do it by themselves without using any form of aggression. I reinforced their positive behaviour by saying to them, “You have shared with your friend.” “You are nice to your friend.”

Toddlers need to experience positive ways of handling challenges. As much as possible, cut down on power struggles. No one is a winner when an adult confronts a young child in a power struggle. When your child has stepped out of the boundary, respond to him matter-of-factly and stay calm. Avoid confrontations. If he climbs on the furniture, say to him calmly, “You can climb on the jungle gym in the playground.” At all times, offer solutions that are workable for your toddler.

Your toddler is still learning about his environment and how to get along with others. Making friends does not come automatically for a young child. He needs the adults in his life to help him learn how to make it happen. His playgroup teacher should plan activities where she partners him while he learns appropriate behaviour to do things with other children.

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No fighting

There will be moments when parents and children disagree with one another. Instead of letting this disagreement get out of control and lead to a worse scenario, parents can consider taking a step back.

When there is no opponent, the child will not fight or keep up his argument. No one is defeated or victorious. More importantly, the child learns how to turn something negative into something positive.

Most family battles are fought during mealtimes and bedtime. Parents who insist their preschoolers eat properly at designated times often find themselves in conflict with their children.

One day, as I was going out, I turned to my neighbour’s house and saw her youngest child, a six-year-old with a bowl in her hands, eating away under the hot sun.

My neighbour told me that she had sent her daughter out to eat her lunch after failing to coax her several times to finish her meal without talking and wasting time.

She tried threatening her daughter with the cane if she did not finish all her food. That did not work. So this time, she decided this was the best way to get her to eat without talking.

When preschoolers fight with their parents, their immediate goal is to gain power. The six-year-old who got sent out of the house with her bowl of rice firmly stood her ground.

She would not behave at the table. She displayed her ability to do as she wanted and engaged her mother in battle.

She managed to stop everyone from eating lunch, too. While she ate outside the house, her mother, grandmother and sister stood at the door to watch her. This was sheer power gained on her part.

There are several approaches to this problem. The parent can remove herself from the conflict situation. Instead of constantly nagging her child to eat, the mother can start the mealtime by telling her how long she has to complete her meal.

Once time is up and the food has not been finished, the table will be cleared without a word. The child may have to wait until tea-time or dinner before she can fill her stomach.

To avoid a power struggle, parents can also carry out what they want their children to do firmly without fussing over them. If you want your child to go to bed, just take him by the hand and lead him to the bedroom to change into his pyjamas.

Do so without paying attention to any form of whining or protest from your child. Eventually, your child will know that you mean business at bedtime.

When your child starts to whine or seek attention for his misbehaviour, you can walk away without talking. Go to a place in the house where you can have some personal time for a retreat.

Do so every time your child chooses to act up instead of using positive behaviour to get your attention. By physically removing yourself from a potential conflict with your child, you are teaching him that you will only deal with reasonable demands and positive behaviour.

When my girls were preschoolers, I would remove the object they were both fighting over without a word. I would take it with me to my “time-out place” until their screaming stopped. When all was well, I would then make my appearance.

Before things get out of hand, parents can choose to take a step back. This way, when children find themselves in a non-confrontational situation, they will stop acting up because they find it is futile.

When parents choose to withdraw from conflicts with their children, this means that they will only partake in reasonable and positive interaction with their children.

If their children are unreasonable and using negative ways to get what they want, they will not be able to get it. If this withdrawal from potential conflicts with children is practised in the home, the child will soon learn that the only way to get attention is to show cooperation and not fight with his parents.

I remember my second daughter when she was only four years old, telling her father: “You can tell me in a nice way. You do not have to scold me. I will listen to you.”

Her words reflected the many times I had told her to use nice words to let me know what she wanted. Whenever she threw a temper tantrum, I would leave the spot and keep a distance until she calmed down. Later, when everything is over, I would cuddle her or read her a story.

Telling children to behave when they are misbehaving has very little effect on them. When they choose to engage in a battle, they will not listen to any advice. Parents who choose to cooperate with their children when they are not fighting can make a difference in how they interact with other people.

Children will learn that it is the right thing to do when they walk away from their friends who challenge them.

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No two the same

When it comes to educating persons with a learning disorder, there is no one-size-fits-all solution.

WHEN parents first learn that their child has a learning disorder, very often they feel as though they have been thrown into the deep end.

In Lim Ang Nei’s case, when her then three-year-old son, Nicholas Mathew, was diagnosed with autism, she decided she would not allow herself to wallow in self-pity. Tough as it was, she embarked on a long journey to discover interventions and the different types of therapy that can help her son. Along the way, she discovered that she is not only helping her son but others who are in a similar situation.

Foregoing her career as a TV producer and writer, Lim spent a considerable amount of time and money to learn all about autism spectrum disorder, a neurological disorder that can in varying degrees, impede speech, learning, social behaviour and body control. Hence, the classification of persons with autism as high, moderate or low-functioning.

In the lexicon of autism, there is a continuum of therapies that parents have to familiarise themselves with and decide on for their child. They include behavioural modification, mediated learning, speech therapy, sensory integration, brain gym, play therapy, music therapy, biomedical intervention and diet intervention. Which works? As experts would argue, no two persons on the autism spectrum disorder is the same. What works for one may not work for the other.

“We owe it to our kids to at least try each therapy,” says Lim. In most cases, parents usually opt for a combination of therapy, depending on the resources they have. These various therapies are often expensive, urban-centric and not tax-deductible.

For Lim, after paying six years for speech therapy, she stopped as it did not work for Nicholas but other forms of intervention did, in particular brain gym which helps to integrate the left and right brain to enable the person to see the big picture in a coherent form. It involves modulating the senses that are not in sync as indicated when a person is hyperactive or extremely passive and is affected by light, sound, touch or smell. Poor pencil grip and illegible handwriting are also signs of sensory dysfunction.

“My son’s speech became clearer after doing various exercises under the brain gym programme,” says Lim, a mother of three. So by the time Nicholas was nine, Lim became a certified brain gym trainer herself. The certification, which took her six years to secure, enables her to conduct courses on specific exercises which work towards bringing a balance to the body system and to clear obstacles in the way so the person is able to learn without stress.

Thanks to his mother’s knowledge in gentle movements and touch points like pressing the “brain button” (the points just below the collar bone), cross crawls and other non-strenuous body movements, Nicholas, 11, is relatively calm and rarely has challenging behavioural issues like self-stimming.

“Drinking water is also vital to energise the body,” says Lim.

But Lim stresses that brain gym has to be done in tandem with other forms of therapy.

“The brain gym exercises help prepare the child for academic learning,” she adds. That’s where behavioural modification therapies like Applied Behaviour Analysis and Picture Exchange System (PECS) come into play. This entails breaking the tasks into smaller steps to suit the child, rewarding him for good behaviour and providing the means to communicate when words fail, in a structured environment.

To further validate her work in these areas, Lim is completing her diploma in Learning Disorders Management and Child Psychology. Armed with her qualifications and her teaching experience, Lim has stepped out in faith this year with her own outfit. She has four special needs students signed up for her FISH programme – an acronym for Faith Inspired School House programme.

“My aim is to serve those with special needs, to teach in such a manner that the children find it worth learning,” adds Lim.

And this is what Mary Anne Joseph, a seasoned therapist with over 20 years’ experience, aims to do at her new Mary Anne Joseph Special Needs centre in Wangsa Maju, Kuala Lumpur.

Mary Anne believes that every child, no matter how challenging their behaviour is, can be taught to behave appropriately and learn in a mainstream school environment if the right interventions are in place.

Mary Anne who has a degree in philosophy in education, specialising in special needs, considers behavioural modification therapy as the main thrust of her work. She has 40 students under her charge. Their ages range from 15 months to 24 years. Like Lim, Mary Anne maintains that behavioural modification therapy can’t be done in isolation as most autistic persons have issues impacting their health, vision and muscle tone.

For instance, to help her students use their muscles appropriately, horse-riding, swimming and other outdoor activities are a must. Likewise, students have to undergo exercises to improve their fine motor skills. She also believes in encouraging the families using her services to live and eat healthily. “That means wholesome, home-cooked food,” she stresses. To build up their social skills, therapies are done in such public places as the supermarket.

Mary Anne is convinced that when the child is primed – by addressing sensory, health and other problems – only then is he ready for learning.

Besides one-on-one therapy, Mary Anne also provides assessments, and conducts group therapy and integrated play groups. She regularly holds talks and training for teachers and goes overseas to share and learn from others. She is assisted by two therapists and she maintains that parental involvement is integral to a child’s progress.

“Which is why we insist parents must undergo training. Without their input, it will only result in failure,” she says.

While there is no denying that modifying behaviour is vital, the biggest challenge remains: is the child’s response the result of his ability to understand what is presented to him or is it a consequence of rote learning?

Soo Kui Chien, a trainer in Dr Reuven Feuerstein’s Mediated Learning Experience (www.icelp.org) says the role of a therapist is to mediate intention to the student, to give meaning to the task that is presented to him and to be able to anticipate what appropriate feedbacks to give when he responds.

“Any child has the ability to adapt and learn new things. It depends on the quality of the interaction between the student and the mediator,” he says.

Soo maintains too that parental involvement is vital as they are the primary mediators of their children. As the child’s ability to learn increases, parents must be trained to keep up with the child’s progress, he adds.

As it is, there is no mother-of-all-fixes as far as teaching the intellectually challenged is concerned. There is still so much to learn about the brain. But in the end what really matters is having a heart to reach out.

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