A mother's inspiring struggle with autism

Update: January, 27/2015 - 09:29

Twelve-year-old Phuong Minh (left) was diagnosed with autism at the age of three. Her mother, Dao Hai Ninh, spends eight years writing lesson plans and teaching tips to help her daughter recover from autism. — PHOTO PROVIDED

by Thu Huong-Vuong Linh

HA NOI (VNS) — Hiding under a table in the classroom, Dao Hai Ninh watched in pain and dismay as her three-year-old daughter was subjected to the "special method" used by a centre to teach autistic children.

The children were required to sit and stay confined to their desks like other children, as though their special condition was irrelevant, or could be ignored into submission.

After two days at the centre and a week of therapy at a hospital, Ninh was left with nothing but the knowledge that these methods do not work, and the painful experience of people telling her that autism cannot be treated with medicines.

It was 2006. Like many parents of children with autism, the 40-year-old Ha Noi resident had believed that taking her daughter to a "specialised" centre was the only way to "cure" her.

Her daughter had been diagnosed with attention-deficit hyperactivity disorder when she was three, and doctors had said it was a form of autism.

Then, a three-day workshop conducted by a woman who'd attended a course on autism in the US made Ninh realise that her daughter could have no better teacher than her mother.

Thus began a long, eight-year struggle to bring her daughter, Phuong Minh, to as normal a level as possible.

When Minh was born in December 2003, Ninh had noticed that her daughter cried "differently" at birth. In the first two years of her life, Minh was a frequent visitor to the hospital, suffering from nausea, fever and digestive problems.

Between 20-28 months, Minh did not speak a word and could not recognize her mother and father, and showed no reaction even when she was hurt.

In 2006, doctors at the National Pediatrics Hospital in the capital city confirmed that Minh was autistic.

"Those days were the worst in my life. I could not believe that my daughter, born healthy, was autistic. I did not even understand what autism was," she said.

It was a pharmacist who recommended that Ninh get in touch with other families with autistic children and she learnt about the three-day course.

The main message Ninh got from the course was that family members would have to fight this battle with their child. No centre or expert could do this.

Back to basics

Ninh began teaching Minh the simplest of tasks like breathing, chewing and walking properly.

After careful observation, she'd realised that her daughter did not know how to chew, which was causing the nausea. To teach Minh how to chew, she asked every member of the family to chew slowly and asked Minh to follow the steps. To help her sense temperatures, she used a hot-and-cold bottle. To help the child identify pain, she used a piece of broken glass to prick her finger and showed Minh the blood.

"Normal children can absorb basic skills by themselves or only need to be reminded once or twice," she said. "For autistic children, one word might have to be repeated a thousand times."

Ninh prepared daily lessons that could be adjusted on the basis of her daughter's reactions. She noted every change in a diary.

The lessons broke down every routine task, including wearing clothes or brushing the hair, into steps that would be repeated as often as needed.

The key, Ninh realised, was to allow the child to see, touch and feel real objects, and use every possible motivation. For instance, once she saw that Minh liked the blue color, she would give rewards in that shade.

Ninh took her daughter to places where she could touch the objects she had to learn and identify. They went to the market to learn the different fruits and vegetables, and met with traffic policemen and xe om drivers as people she would have to interact with in the future.

To teach her daughter how to walk properly instead of tiptoeing, Ninh came up with a poem to make the practice of walking more fun.

Minute detail

All of Minh's reactions were recorded in a diary in minute detail.

On April 25, 2006, Minh did not avoid eye contact (20 seconds). On May 31, 2006: she sat at her desk and looked at the teacher (20 seconds/per session).

Apart from the painstaking process, there were other challenges.

"Sometimes, Minh's language suddenly regressed and I had to really think hard about what I'd done wrong. An autistic child is like a blank paper. You cannot blame her at any time for not showing any sign of improvement."

Teaching Minh language skills was nerve-racking. Despite using flash cards with photographs, her daughter did not speak a word or recognise anything for a long period.

One day, when she bought several fish to put in an aquarium, Minh finally muttered the word "ca" (fish in Vietnamese). Learning a few words could take months.

Ninh's persistence and patience paid off, though. A year later, in 2007, her daughter showed significant improvement on the Childhood Autism Rating Scale. She managed to do every basic task and played well on her own.

The mother kept constant vigil as Minh entered first grade and progressed at school.

Twelve years old now, Minh has become a fairly typical kid with good grades. She likes drawing and is talkative.

Knowledge transfer

A friend encouraged Ninh to chronicle the years of hard work in a book that would help other parents.

The book, published late last year, not only tells Minh's story, it also contains all the lesson plans that Ninh prepared on her own.

The lesson plans have also been put on a website so other mothers have no need to reinvent the wheel.

Do Thi Quynh Nhu, a HCM City resident, whose daughter has been diagnosed with autism, said she was inspired by Ninh's story. She got in touch with Ninh and has stayed in touch, and the two mothers exchange phone calls very often.

On a typical day, Ninh's phone rings frequently as mothers across the country call and ask for advice.

She said: "I want to tell other Vietnamese mothers to fight this battle with confidence. I want to tell them that their child can become normal." — VNS