Grace: Why We are Here

interview by marie chung

In light of Mother’s Day in Australia and the celebration of the great mothers who have sacrificed many things in their own lives, to nurture and guide their children in their journey towards adulthood, Grace’s story could not have come at a better time to make this celebration worthwhile. Grace has been a strong companion to her husband and a mother of three beautiful children, two of whom have autism. She has had experiences few of us can imagine – experiencing significant poverty and losing the support of her closest family due to the ‘taboos’ of disability in Asian cultures. Yet despite the hurdles she has had to overcome, Grace remains a powerful figure that challenges our capacity to take on pain and transform these into learning lessons for ourselves.

Grace, it would be great to go back a few years and hear about when and why you came to Australia initially.

I came to Australia about 10 years ago because of my husband. I came to Sydney for a holiday where we met but I later went back to Singapore. We didn’t really start as an official couple, because it was a long distance relationship. Not long after I flew back to Sinagpore, he was diagnosed with Leukaemia – it was bad. He had lost a high-flying job as a treasurer for a large company because his condition was getting worse. Max also lost his car, his house, and he used up all his savings for his treatment. By the end of it, he was sleeping on the streets for a couple of months and he didn’t want to tell me.

So how did Matt manage to stay alive whilst living on the streets?

This is a long story. When he was diagnosed with Leukaemia, his ex-girlfriend asked for money for their alleged daughter (who he didn’t know existed). His ex asked for child support which was a total shock for Max at the time. Because of this, Max ended up giving away all of his savings and drew up a will that would allow his daughter to access all his money when she reached a certain age. He did that because he thought he couldn’t make it.

Max was also kicked out of his family during his Uni days. His father was a British diplomat and wanted him to be a doctor. Max couldn’t make it to medical school and his father was so furious that he had to move out from home. After that, the family never wanted to make any connections with him and therefore did not support him whilst he was desperate and living on the streets.

Max didn’t want to get in touch with me because he did not want to burden me. One day, he fainted in his tent at the park he was sleeping at. He was so blessed though because his Uni friends happened to be jogging pass and found him. They contacted his younger brother in Hong Kong who then flew over to give Max a bone marrow transplant to save his life. When I was contacted, I made the decision to pack my bags and come here – that’s how our relationship began.

How did you begin to pick yourselves up after that?

It was very difficult. When he was discharged, he was trying to find jobs and started doing low-paid jobs. It was difficult because he was a totally different man to the one I once knew. He lost his confidence and his morale. He was insecure, he couldn’t trust anyone. When he was really sick, he went to his father’s door but his father turned him away. His dad asked him, “what are you doing here? Now you are coming back for help. Don’t you remember you rebelled against us in Uni? You think you are so great. Go and seek help for yourself because you think you are so great.”

They didn’t understand what was going on in his life obviously.

No. After that, we contacted them to tell them that we were married. They said it was a disgrace that he married someone with no background. I’m not from a rich family, whereas his family is very rich.

You are no longer in contact with the family?

No, his father passed away from Leukaemia. It’s not a genetic illness, my husband just happened to get it as well.

Have these hurdles allowed you to become stronger as a family or as a couple?

It was difficult for me being in the relationship. Coming from Singapore, I had my friends, my church that I was close to and my family. It was a big decision for me to come to Australia. I’ve never lived in another country before or gone overseas.

Were you employed in Singapore?

Yes, I was working for Ralph Lauren as their operations manager. I started working at 16, and I worked 15 years in the retail industry. I looked after all the stores and ensured all the operations were going smoothly.

When you came to Australia, was it hard to find work?

I’ve never been able to work here. In the first years, I was sorting out my visa. My partner was also very insecure – I couldn’t go out with friends or anyone because he didn’t trust them. He didn’t trust me. He was a different person.

We nearly split up. It was difficult for me because I am a sociable person, I can make friends with anyone easily. He totally changed after he got sick. No one helped him when he was sick. It was just me and him, and to him, having me was just enough. But you can’t live in a world of your own.

It took nearly 5 years to have our first child and that has helped him. In the first few years of our relationship, we started with nothing. We moved into an empty apartment, apart from a dining table. We had no TV and we slept on a mattress for 3 years – even when I was pregnant with Jasmine.  It was a miracle because he shouldn’t have been able to conceive when he was undergoing treatment for Leukaemia. The doctor said it was almost impossible but we managed to conceive our first child.

At the start it was really hard. We were only earning $700 – $800 per week between us.

We slept on the floor and in the winter, we just had towels as our support. I never want to live like that again. I was 24 – 25 years old then.

"At the time I told him it didn’t matter, because my philosophy of life is, you can have nothing in life, but what you have is your breath of life. And so when you have this breath of life, you have a chance to make it better.

So it doesn’t matter if you have nothing, as long as you are healthy, you have your life back, God gave that life to you, you have a second chance and you have me. I said, “you can get better, we can buy things back slowly and build ourselves up”. What is important is that you keep your mindset happy, if you don’t then your life won’t change for the better – it would either get worse or stay in the same place.

I told him after he was discharged, “you make a choice. Either you make your life better or go and jump down from the building. There is no luke warm in this world, either you live life to the fullest, or you leave. I don’t believe in just hanging in there, I packed my bags here not to see you hanging there, or to see you getting depressed. I’m here for you”.

Of course he didn’t get the message straight away. He was a high flyer, played golf every weekend, drove his fancy car and ate expensive meals. When he suddenly lost all of that, it was hard for him to swallow, especially as a man.

After awhile, he started to get better. He got a pay rise which meant we could have char siu (chinese pork) with our rice rather than just having soya sauce on rice. We spent our days simple. After dinner we got our ice-creams and he would get his newspaper at the gas station. I was very happy with that.

You had your first child in 2005, when did Luke come along?

2009.

Later you found out that Jasmine had autism. What was your initial reaction when you found out?

I was blank. My next thought was, what is the future going to be like? I thought about the fact that she was potentially not going to be self-sufficient. At that time, I felt that the darts were being thrown back at me again. Did I do something wrong during my pregnancy? The condemnation began to sink it. So because I am Christian, I started reading the bible and began rejecting this condemnation. I knew that once I began condemning myself, I would lose myself, my faith and my confidence – this will not help my daughter. It won’t change anything. Instead, I decided to accept the way she was.

God spoke something so clearly to my heart, that was that we all came to this earth for a reason, whether you are disabled or have a disability, or you are normal, we all have a reason on this earth. No one comes here to live and wander aimlessly. I believe that my God is bigger than anything on this earth – it’s my belief that he created this world.

Obviously it was a struggle to deal with her, because she has no communication at all. During the first three years of her life, there was some stage where I started becoming depressed because she wasn’t responding. She had no smile, contact or whatsoever and it was especially hard in her first year when she couldn’t sleep. We had to wheel her around in the early morning, outside in the cold, to make her sleep.  The first three years we couldn’t go anywhere because she cried all the time. We couldn’t go out with friends and people didn’t understand. At the time we didn’t know she had autism until she was later diagnosed. We just thought she was a difficult baby.

It changed your lifestyle?

Yes. We couldn’t eat at normal times, we had to eat outside of peak times and eat quickly. There were a lot of adjustments, both my husband and I worked out that we had to revolve our lives around her, rather than around what we wanted to do.

How did that impact your relationship romantically?

We had constant fights, and there was a point I went to Singapore for a few months. I needed a break and I told my husband it was difficult. I said for five years of my life, I didn’t have friends. It started off with him, then Jasmine. I felt that I lost my life to both of them. When I came back, Jasmine got worse and worse – even now she is not toilet trained.

How old is she now?

She is 9. She has no language capacity at all and cannot respond to things, even though she has attended three years of schooling. Luke is also not toilet trained. We have to clean their poo and wee.

Would you say Luke’s autism is less severe than Jasmine? Do they differentiate between levels of autism at school for the children?

In school they can categorise children according to their learning ability. Luke is in the group of higher learning ability than Jasmine, but Luke has attended a few months at the autism school. The teacher actually recommended that he should go into the regular school for next year. He has a very high chance of being able to transfer into a normal school.

And you came to Melbourne from the Gold Coast just for autism school? In the Gold Coast, they didn’t have a school that specialised in teaching autistic children?

When we were in the Gold Coast, we weren’t aware that Luke was autistic. Up to the age of two, he reached all the milestones that a normal child would reach, until he started to develop a phobia for water. He used to love going to the swimming pool until the age of two, when we brought him once and he started to freak out. We were puzzled, and subsequently when my partner was cutting his hair in the bathroom, Luke started freaking out and crying. He never had issues with that before and I initially started blaming my husband for the hair incident. We started throwing hair into the bin, but that didn’t help.

Luke’s speech also didn’t improve so we had him assessed. He was diagnosed with autism, and we decided that rather then sending him to a special kids school that was too general in the Gold Coast, it would be better for the children to come to an autistic school in Melbourne.

So from my understanding, I know that autism is associated with the inability to express yourself – how is that associated with the phobia that Luke developed?

All autistic kids have psychological issues, and to my understanding of some autism, every autistic kid is different and unique in their own way. Autism is all about a delay in the brain, I don’t believe there is a one size fits all understanding of autism. It is about trial and error and it is a long journey. For example, we started Jasmine on speech therapy in the Gold Coast, but she wasn’t ready, her brain wasn’t ready. You never know how much the child can take in. Usually what autistic parents do is just use the same treatments or what is recommended, and it can be very costly. It’s a long journey of having therapies and finding the right therapy. Some kids who reach adulthood and who’ve done speech therapy for 20 years might not be able to talk. It all depends on the individual.

How was Luke different to Jasmine?

Luke is actually sociable and soft-hearted. When he sees another child cry or hurt, he will cry. He also has anxiety issues when we are not around. He gets nervous and bites his nails. His sister doesn’t have that though. Luke knows that we are his parents, whereas Jasmine follows strangers and has no awareness of who her family members are. She will hug anyone and kiss anyone and is a very affectionate girl. Any other child will have an awareness of that, but she doesn’t. Luke has the potential to learn things, whereas she doesn’t have any interest in learning at all. We can foresee that Jasmine will be dependent on us for the rest of her life. Luke has the potential to work in society.

I think for most autistic parents, there is a question, “what does the future hold for my kids? What are my children going to do when they grow up as adults?” I believe that if Jasmine were to be engaged in voluntary or social work, it would be enough of an accomplishment.

"I’ve accepted that my daughter will not be able to function like most people, though even though she has a disability, she can still contribute to society. My job as a parent is to train her. She has her own gift and it’s a journey to help her discover her talent and her skill to give to people out there."

Even if she were just to sing to the elderly people in their homes or the hospital, I think that would be great.

You see her as someone that is capable, rather than as someone with no hope and no future.

Yes. I believe everyone has a future. The future you need to create yourself, no one can help you. You have a choice to shape the world as you like. Every one of us is unique as our own.

Have you ever experienced any challenges or prejudice from other children at school, or you yourself from other families?

Yes I do. I’ll start with my family. My mum refused to accept Luke and Jasmine as my children. I guess a lot of Asians still have very backward thinking. They think disability has got to do with the food that you eat, or that you were over tired when you were pregnant with her, or you were not spending enough time with the child. All of it is a self-denial thing. At first it was hard because my mother was not accepting, she was even bitter that I had a third child. She said that I had autistic kids, so why would I have bother having another kid. Many of my other friends have asked the same question.

It was difficult but I’ve come to accept that I cannot expect everyone to agree with what you do in life – even your own family members. Yes, it’s a disappointment not to have that support but if you carry that disappointment, it will hurt even more. That’s the way it is! You have to show that what matters is what they do when they grow up and that they are able to make a difference to society – that’s a great way to show their grandmother what they are capable of and make her proud of them.

They’ve never seen their grandmother?

She refused to visit when she found out they were autistic. They’ve also never met my husband’s family and even my friends. It’s difficult for my friends to understand that we haven’t got a social life. We are living a different life now – even to go on holiday is a luxury. It is difficult for us to even have a meal together as a family and we can’t take family photos together because the children can’t look straight at the camera. I have to answer a lot of questions, such as why my Facebook life is so vacant. What I try to do is share little stories of what my kids do as autistic kids – it does inspire other’s all over the world and change perspectives of autism.

What kind of society would you like your children to grow up in to make things easier for them?

I don’t think I can have any expectations of society because society is made of different people. It’s a great thing to raise awareness of autism, and there has been a lot that has been raised with more people having a better understanding of it. But I don’t think I should have any expectations of people, I just hope that society will realise that people with learning disabilities are different and not less than anyone else.

"One thing that I learnt from my children is how to be myself, that is one thing society has to learn from these children. We are not very good at being ourselves".

We try to meet the standards of Hollywood or the media. I do hope that my children can be appreciated and that they can be themselves. There is a beauty in being able to be yourself and in not fulfilling others’ expectations. As autistic children, they are able to do this, they are happy and they are carefree. What is important is that we shouldn’t live up to the expectation of others and rather, that we create our own world. Autistic kids create their own world. This is what we need to do, create our own world that is not the same as any other.

Grace is an amazing individual with the strength of a whole community embodied in one person. Without the support of much family or many of her friends, Grace found the courage to believe in her husband and her children. They still live a simple life without a car, and live close to a shopping centre and hospital to make things easier for them. A short period after she gave birth to her third child, Grace walked home in the rain, with her new born baby in her arms. As we talked more, there were many tears that I had to hold back, only because I could see she was holding hers back. It would seem ridiculous if I was to mourn for her hardships whilst she was smiling telling her story. Grace’s story reminds us about many things on disability, living with poverty, and difficulties in employment for migrants. Yet even though she had to start back from the basics once more – right down to soya sauce on rice for dinner – Grace has progressed in her own life, filled it with purpose and continues to inspire many others. As a mother, there is no question that she is one of the most incredible ones out there, but also as an individual, a woman and a migrant in her current socio-economic situation, she is one of the strongest role models to encounter.