About 2 weeks ago I read an article in The Star newspaper of the opening of a new center for special needs children (and yes, I now have time to read the papers, not daily, but often enough). My thoughts when I read it, was that it was really good that there are more centers catering for special needs kids because there just isn't enough support here compared to developed countries like UK, and US.
What I didnt know then was that there was a very inspiring story behind the setting up of that centre. A week ago, a good friend emailed me a link about one of the founders and how the centre came to be. It's inspiring because despite the huge challenges faced in parenting a special needs child, she was also able to help other special needs kids, and to further add to her challenges, her husband left her. Reading her story brought tears to my eyes.
See below for the story of the single-mum who set up the school. The 2nd story after that is the article I had first read in The Star, of the opening of the center.
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Single-mum initiates school for disabled children
By Yvonne Lim
http://www.goodtimes.my/index.php/Community/special-needs-school-born-of-adversity.html
Single-mum Christine Wong, who is parent to a child with a disability, turned her adversity into something good not just for herself but for others as well. With the help of other parents of disabled children, the piano teacher set up the Special Children’s Society of Ampang (SCSOA), a school for disabled children.
SCSOA has its genesis in 1996 when Wong, alone and with little cash to spare for seven-year-old Amanda’s costly therapy sessions, teamed up with two mothers whose children also had Down Syndrome to start a "tuition class" for their children.
They held the classes in their homes in rotation but the arrangement did not last because the children became very distracted by the toys in the homes.
Then one day, a parent of one of her piano class students suggested to Wong to start a playgroup for disabled children and charge a small fee for working parents to send their children there while they work. The parent, Maria Chow, even volunteered to run the class for a while as she used to be a teacher.
Word got around and more parents with special needs children began bringing their kids to the class. Three years later, with Wong at the helm, they formed SCSOA with 20 disabled children in a rented double-storey terrace house with borrowed furniture. The next year, SCSOA was properly registered with the Welfare Department as a special-needs society with 28 children. Today, SCSOA is located in a cheery, brightly-painted bungalow, which the society owns.
No longer a "tuition class", it has become a school with 12 committee members, each one a parent with a disabled child; 60 children; 12 teachers; and an unceasing flow of volunteers. Each child is charged a small fee of RM400 a month upon admission to the school. However, the fee is waived for orphans or needy children whose parents cannot afford it. SCSOA relies on donations and sponsorship to meet the financial gap.
Today, some of SCSOA students − nurtured and showered with love through the years at the school − are working as packers under Carrefour’s community outreach project, Carrefour Cares.SCSOA partners with HELP University College, Universiti Tunku Abdul Rahman and Masterskill University who regularly send students to volunteer at the school over a period of one and a half months to three months under their practical training programmes. Wong says SCSOA teachers also benefit greatly from these visits as they learn from the students’ lecturers who regularly turn up to check on their students.
Although 22 years have passed, she clearly remembers the day Amanda was born and the numbing shock she felt when told by the doctor of her daughter’s severe disability. Looking at her success, one would say that Wong has made lemonade out of the lemons life has thrown at her. But it has never been easy. “It never is, for parents with special needs children, especially if you are a single parent,” says the gentle-mannered Wong.
“She was born on a Wednesday,” she recalls. “After delivery, my mother and my husband asked why she wasn’t in the cot like the other babies. The nurses said they were keeping her for observation and I got a little worried.
“The next morning, I was alone in my room when the doctor came and flatly said, ‘Good morning. Your child is mentally retarded’. He explained Amanda’s condition, but I didn’t hear a word. My head was spinning; I was in such a shock. He didn’t even bother to wait for my family to come in first to help me bear the news.”
As a toddler, Amanda needed "24-hour surveillance" as she was a hyperactive child, always darting and running under the racks at clothing stores, Wong says.
When she turned seven, Wong and her husband had another child, Jonathan, who was born normal. It was a tough time trying to get Amanda to school as she was having difficulty accepting a baby brother in the family.
“By that time there was no more early intervention for Amanda. So I took her to a government (public) school where she underwent an assessment to determine if she could attend the school.
“During the assessment, Amanda had to stack up some blocks but before she could even finish, the assessor took away the blocks and gave her another puzzle to solve. That upset Amanda who threw a block at the assessor.
“The assessor was angry and told me, ‘If your child cannot behave, she won’t be accepted. Our children (at the school) must be well behaved, must sit down quietly, cannot run around and must be toilet trained’.
“I thought this was very unfair. Thousands of children go into Std 1 every year. When they reach the age of seven, they have the right to go to school,” Wong says.
After that, it was rejection after rejection from all the public schools for Amanda. The situation became even bleaker when Wong’s husband, unable to take the strain and humiliation of having a disabled child, left the family. Wong was now alone.
Without the additional financial support, she could not afford to pay for Amanda’s private therapy sessions on her income as a piano teacher. The rough road she had been travelling on had become a very steep hill.
“I had to struggle alone, running my home, raising my children, running the classes for the disabled children and teaching piano to make ends meet,” Wong recalls. “It’s much easier now that Jonathan is bigger as he can take the bus to school by himself."
Apart from helping the children develop, Wong and her committee members try to help and counsel the parents of the children at her school, some of whom are depressed and have lost hope.
“I’ve been there. I’ve walked that path,” says Wong. “It is very frustrating, you have no where to go, you don’t know how to seek help. That’s why we try our best to support the parents as well as the children.”
Wong is thankful for her family members, whom she says are her “pillars of strength.” “My mother has been my right hand throughout, giving me support while my father was pretty much Jonathan’s father until he passed away in 2008.”
Today, Jonathan is a strapping, well-mannered, athletic and bright Form 3 student. He also plays the violin and piano excellently.
“It has been a very tough road, but this kind of toughness is good because it strengthens you and you can help others who are walking the same road,” she says.
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The Star
Monday May 16, 2011
Selangor ruler opens centre for special kids
By FAZLEENA AZIZ
http://thestar.com.my/metro/story.asp?file=/2011/5/16/central/8662514&sec=central
THE Special Children Society of Ampang (SCSOA) Centre was officially opened by the Sultan of Selangor, Sultan Sharafuddin Idris Shah recently.
SCSOA is a non-profit charitable organisation providing a centre for children and adolescents with various disabilities, helping them to maximise their potential and achieve independence.
There are 60 children at the centre from the age of three to 30 years. Their disabilities range from Down Syndrome, Autism, Cerebal Palsy, Global Delay, Prader Willi Syndrome, Epilepsy and slow learners.
The centre aims to provide a holistic programme and training, not only for children but their parents and families as well.
They encourage participation from local communities by volunteering time and resources, thus allowing the children to integrate into society.
During the event, Sultan Sharafuddin was taken on a tour of the centre. He was also presented with a special artwork made by one of the children as well as treated to performances by the children.
Also present at the opening were SCSOA patron Tengku Puteri Puan Sri Nor Zehan Sultan Salahuddin Abdul Aziz Shah, Tengku Panglima Perlis Tan Sri Syed Anuar Jamalullail Tuanku Syed Putra Jamalulail, Ambassador of Cambodia Princess Royal Norodom Arunrasmy and Ampang Jaya Municipal Council (MPAJ) president Datuk Mohammad Yacob.
Meanwhile, the Ronald McDonald House Charities Malaysia (RMCH Malaysia) contributed RM257,000 to the centre’s new premises.
The money was raised from the annual RMCH-Tropicana Charity Golf Championship in 2005 to help start the ball rolling for the centre’s effort to get a new building.
A total of RM80,000 out of the sum raised was channelled to establish the 10th Ronald McDonald Sensory Room in Malaysia.
The facility provides a full range of sensory stimulation using ‘Snoezelen’, a multi-sensory stimulating system.
SCSOA president Christine Wong said the opening marked a major milestone of achieving their dream of owning their own home after 12 years.
She added that they started in 1999 with three parents and children with toys and books borrowed from Malaysian Care’s library.
“We want a place where the handicapped and able-bodied can integrate and live on equal terms.
“We may not be fully equipped with the state of the art facilities but we are trying to get there,” she said.
Wong also thanked all their sponsors for their encouragement and support over the years.
The centre is funded by parents contributions, public donations and fund raising activities.
To contribute to the centre, call 03-4256 8719 or e-mail enquiry.scsoa@gmail.com or log on to www.scsoa.org.my. SCSOA is located at No 386, Jalan 3, Taman Ampang Utama, Ampang, Selangor.
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