After 16 years of living with an autistic child, I am grateful

By Hong Phuc   April 2, 2019 | 04:41 pm GMT+7

Life’s hard for autistic people, and much harder for their families. Yet, amidst all this suffering, there is gratitude.

Journalist Hong Phuc

Hong Phuc

"There’s a retard here," a corpulent woman shouted as she punched on my apartment door. "There’s a retard here!," she kept yelling.

We were living in Hanoi back then, when my son was five years old.

That woman, a neighbor, rushed into my house to find "the retard" because, she said: "He stole my grandkid’s toy, he even opened the fridge to take biscuits himself."

That day, my son lost a piece of his toe because of the iron folding door. That neighbor tried to push him out of her apartment while my son tried to get back in.

After she left, I followed the trail of blood to find my son hiding in a corner of the bedroom. He did not cry and his eyes were wide open as if he had never been chased away so many times before.

Then he lay down, very still, rolling the wheel of a toy car as I bandaged his toe.

When was the last time that you had peace of mind?

My answer to that question would be: the time before a hot summer afternoon in Hanoi, more than 13 years ago.

My life was fine until the doctor, bedecked with golden jewelry, asked me: "What do you do?" Bewildered, I replied: "Well, actually, I'm a reporter."

She interrupted me immediately: "Severe autism. These kids will grow up to be criminals. You should either have him treated at the hospital [Vietnam National Children's Hospital] or bring him to this center. Here’s the address." That "center" belonged to her.

I could not lift my face up, and kept staring at the floor.

I remembered that when I was pregnant, I’d read twice the book "Harvard Girl," written by Chinese authors Liu Weihua and Zhang Xinwu that describes how they raised their daughter, Liu Yiting to be accepted to Harvard University. I wondered what I had done wrong.

The week after that day I could not eat. My life was in complete darkness. Every nice thing people said to comfort me only deepened the emptiness in my soul.

And after the period of stumbling and self-blame came the period of over-optimism that I forced myself to enjoy. I hired two tutors for my son, each of them working for an hour and a half, each day. I took him from center to center for therapy. I had him treated by different types of doctors and let him have acupuncture and massages. I even reached out to fortune-tellers and spent tens of millions of dong (several thousand dollars) for rituals conducted by people whose names and addresses I cannot even remember.

Very soon, I realized that the afternoon at the Vietnam National Children's Hospital that summer was just a small crisis in my life.

At 3, my son urinated into a bowl of soup in the middle of a family meal, crashed all the eggs in the fridge and refused to sleep in a bed. He was admitted to and then refused by dozens of kindergartens.

At 5, he spat into the coffee that strangers were having by the streets. I could not tell how many times I had to buy people another drink and apologize for my son’s behavior or stop people from giving him candy, ice cream or even some money "because he was just a kid" or when I was looked down upon and scorned for not being able to train my own kid.

At 6, he mixed two kilos of washing-powder with rice.

At 7, the first primary school I took him to said it would only accept him as an observing student while the second one wanted me to pay his head teacher VND500,000 ($22) each month aside from all the school fees, as my son was naughty in class. And I got used to the scene in which mothers of other children angrily requested the school to expel my son or ban him from sitting next to their kids.

At 10, he took half of a processed chicken in my parents’ fridge and put that into the toilet.

At 13, he took VND4 million ($170) my sister left in a bag she put on a hanger to trade for a half-finished bag of snacks.

At 15, he dumped my new dress into the waste pipe of the apartment building, only because he did not want me to wear it, and threw away a whole pot of fish I just cooked because he did not like the taste.

Just last year, when everybody in the family was gathering for Tet, or Lunar New Year, and giving each other good wishes, my son looked me straight in the eyes and said: "Mom, don’t die. Do you understand human’s language?"

Let’s just assume that was an acting out of his love for me.

Many people have asked me: "How he is with autism? Does he go to school?" and I would answer, for the thousandth time: "He has problems with his behavior, his way of thinking is quite different, and he’s still in school."

Some of them come close, eyes wide open with excitement.  They ask: "Then he might have some special talents, right? Is he good at music? People with autism are normally geniuses."

And I would quietly blame some journalists. I would wonder what kind of stories they had written so that people assume that autistic people in general are geniuses when just one percent of people with autism fit that description.

It is also so hard for me to explain that while it is tough to raise an autistic kid, it does not necessarily mean unhappiness.

After 16 years with a special kid, I feel grateful for all the difficulties we have been through, as they have made me realize the beauty in the soul that has stayed forever young and pure in my son, and easily gets close to those with "abnormal" appearances and characteristics.

I have learned that there are things that will never be the same, and if there are no challenges to face, we might easily get lost in this life. I have also got used to asking people to stop talking about themselves and their feelings in their social media posts with references to "autism."

For example, when they feel somewhat lonely and sad on a rainy day, they would post: "Feeling autistic with this rain. Anyone care for a drink?"

Autism is a defect that cannot be seen. It is difficult for people with autism to go to school, be on their own, communicate, and stay focused. They have bizarre behaviors, they get angry easily, they only have certain foods, they put their belongings at certain places and have a fixed formula for their daily activities.

The number of people with autism around the world has doubled in the past decade. In the U.S., one in every 68 children is born with it.

Vietnam is estimated to have 500,000 people with autism, which means millions of their relatives are struggling to deal with the syndrome, but "autism" is not defined and included in the Law on Persons with Disabilities, and there are no statistics announced by the Ministry of Health on autistic people or their current situations. That is the reason why so many schools refuse autistic kids and there is zero support in terms of policies, health insurance, subsidies, or vocational training for this needy community.

April 2 has been chosen by the United Nations as World Autism Awareness Day to raise awareness about people with Autism Spectrum Disorder. On this day, buildings around the world are illuminated in blue in support of those who live with autism, and the campaigned has been named "'Light It Up Blue."

So if you see that blue light somewhere on that day, please keep in mind that millions of people in Vietnam need you to understand and respect them.

Who knows, thanks to your sympathy and understanding, an autistic person might get a chance to thrive.

*Hong Phuc is a mother and journalist living in HCMC. The opinions expressed are her own.

 
 
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