Children and families are our teachers – Wong Woan-Yiing
Published: 10 November 2014
When we talk about rehabilitation, we often think of certain programmes and therapists. We forgot that there are good teachers at our doorstep. Children, parents and families are our teachers and resource persons. We need to have a paradigm shift to embrace this.
I would like to highlight two families that taught me, that with dedication and love, the home environment and daily experiences can prepare our children well for meaningful participation in daily activities.
Mei is a typical New Village mother whose husband works in Singapore, leaving her to manage the household. Mei brought her son Ben to see me as she suspected that he may have autism after reading some information about it in the newspaper.
At the time I saw Ben, he was nearly three years old, non-verbal, hyperactive and becoming aggressive. Whenever he did not get his way, he would bang his head on his mom’s face, giving her a blue-black eye.
I confirmed her suspicion as Ben scored high on autism rating scales.
Mei did not take long to come to terms with his difficulty and started to contact other mothers who had children with autism. She realised very quickly that she must do something to help her son.
Without any sophisticated background knowledge or theory/programme, she started making her own activity programme. This included labeling everything and everyone at home, patiently waiting for him to make requests and breaking tasks into small manageable parts. She continued to have patience and create opportunities to communicate with him. Very soon, she noticed a difference in his social awareness.
Her limitation then was that she did not have a driving license. While she made every effort in taking public transport to come to Ipoh for early intervention, she also plucked up her courage to learn to drive.
The Early Intervention Centre worked with her, equipping her with more ways to teach him at home. Within six months, Ben made significant progress verbally.
Mei has never attended ABA programme but she knew the importance of recording. Each time she came for a review, she would give her detail report celebrating each of his milestones, e.g. “today I took him for his haircut and he was willing to sit by himself on the chair”; “Ben is becoming talkative. He is able to greet others during Chinese New year.”; “It is easier to go out with him”; “Ben is still not yet able to pass his homework, what can be done....”
Mei has now become one of our resource mothers for children with disabilities. As a mom who has gone through those difficult early years, she is in a better position to counsel new mothers.
She goes out for coffee and picnics regularly with other families. They laugh and cry together. They help one another to look after their children. They traveled together for courses.
Ben’s father comes home every 2-3 months from Singapore and has also celebrated Ben’s progress. Before school enrollment Mei scouted for a small school around the area. She took him to survey the school, made social stories about the school so that Ben knew what to expect.
Now he is in Standard 4 and remains at the top 30% in class. He also has no difficulty in his daily living skills and helps to look after another younger brother who also has developmental disability.
Another family has Amin, an 8-year-old boy with Autism Spectrum Disorder. His mother, Puan Nurul, only found out that he has autism when he was five, and this explained his odd behaviour of major meltdowns with small changes in his daily routines and his speech “abnormality”.
He speaks in fluent American-accented English while everyone at home speaks Malay.
His mother wasted no time in finding out more about the disorder. She went on the internet, searched from various websites, Googled, YouTube and made contacts with other mothers on a Facebook group.
She found out that Amin likes to draw and has sheets and sheets of paper for him to draw at home. Through these drawings, Nurul taught him about family members and relationship, about manners and greetings.
She used social stories to give him warnings about changes that are anticipated, and even in her own capacity, helped Amin to grieve over his grandfather's death.
Due to his initial difficult behaviour, Nurul had to enroll him into a small kindergarten as no other school will take him. He picked up an extra language, Mandarin.
He continued into a mainstream Chinese school. His school teachers found a few friends to help him settle into the school routines (copying, passing work to teachers, taking books out, going to canteen). Meanwhile, his mother continued to use stories to help him ease into the school life.
These two mothers show that parents are just as capable as professionals in providing young children with developmental disabilities with the training, experiences and opportunities that help them participate meaningfully in everyday activities.
Professionals need courage to relinquish “control” and recognise the paramount importance of the role of parents.
We at the Malaysian Partnership for Children with Disabilities (MPcwd) want our society to support and work with families of children with disabilities.
The MPcwd comprises many NGOs, governmental organisations, family support groups and Unicef. We want to help raise the voices of children with disabilities to create a more inclusive society. – November 10, 2014.
* Dr Wong Woan-Yiing is with the Malaysian Partnership for Children with Disabilities.
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