UNCONDITIONAL LOVE: Today is Mothers Day. Three women share their inspiring stories of fortitude, persistence and faith in caring for the special children in their lives, Suzanna Pillay writes
ELAINE Khaw Lean Kee, 76, and Raymond Ooi, 52
Elaine has endured much pain in having to watch her two sons battle with life-threatening illnesses. She lost her second son, Ronnie, to leukaemia when he was only 23 because the family could not afford to pay for a much-needed bone marrow operation in Australia that could have saved his life.
“But even then, Ronnie was more worried about his brother and the care he required than about himself. He told me, ‘Mummy don’t get upset. If Jesus wants me to help him in this world, he will cure me. If he needs me to help him in heaven, he will take me. Please don’t cry if I go. One day we will meet again.”
Her eldest and remaining son, Raymond, has been battling brain tumour since he was 14.
“He underwent and survived several operations over the years, but four years ago, he took a turn for the worse when the tumour returned, rendering him partially blind, bedridden and requiring 24-hour care. Before this, he could take care of himself, and although he was unsteady at times, he did things independently to the best of his ability.”
With no home, savings or pension, Elaine, her 77-year-old husband, composer Datuk Ooi Eow Jin, and Raymond rely on charity to get by. They pay for the rental of their home and food from these funds.
A neighbour cooks lunch for them every day but if it is not enough, Elaine buys extra food from an economy rice shop.
She is unable to cook as she has to care for two family members who need constant supervision: Raymond and Ooi, who has Alzheimer’s.
In his heyday, Ooi was a well-known pianist, composer, arranger, record producer and music instructor. He composed and arranged songs for artistes such as Sudirman, Rafeah Buang, Dahlan Zainuddin, Jennifer Yen, Francis Yip, the Alleycats and Salamiah Hassan. However, he was a contract employee and, therefore, does not have a pension.
Elaine is the only caregiver for her son and husband. She feeds, bathes and changes Raymond’s diapers. Although Ooi is mobile and can eat on his own, he cannot be left alone.
Despite the hardship, Elaine doesn’t complain, remains positive and is thankful for the help she has received from others. Her faith in God has also kept her strong.
“Malaysia has a lot of kind people to support and help me. Sometimes, when I get upset, I console myself by remembering that God will not give me what I cannot take.”
As a mother, her constant worry is what will happen to her son when she and her husband are no longer around.
“I hope God will bless my family and keep us together.
“My Mothers Day wish is that there will be someone or an organisation to look after Raymond when we are gone.”
Dr Azalina Masdar, 42, and Amira Daniea, 11
In March 2005, when she was pursuing her studies in anaesthesiology in Dublin, Ireland, Dr Azalina Masdar had her youngest child, Amira Daniea. Then 31, she welcomed a healthy baby girl.
It was only when Daniea was 18 months old that Dr Azalina and her husband, who was also pursuing his PhD in Dublin, noticed that their child was not speaking, avoided eye contact and was unable to interact socially with them.
Worried about their child, they took her to a child developmental clinic, where initial investigations showed that despite normal development and hearing, she could not talk and had poor social skills.
“Doctors said there was a possibility that Daniea had autism and she was referred to a children’s hospital. A team comprising a community paediatrician, psychologist and psychiatrist performed tests and assessments before she was diagnosed as having Autism Spectrum Disorder. She was 2. She had to undergo therapy sessions to help her improve her communication, social interaction and behaviour.
“Three months later, Daniea started an early intervention programme. She had to undergo applied behaviour analysis (ABA) therapy interventions with an ABA therapist for 20 hours per week.
“We were shocked, but we accepted it with an open heart. Caring for an autistic child was a challenge, especially as we have two other children, Nabila and Asyraf, who were then only 9 and 5.
“We had to get our priorities right. Not only did we have to manage our studies and careers, we also had to take Daniea to the hospital regularly and help her with exercises at home. This included speech and behaviour modification therapies.”
Eventually, Daniea could pronounce words when she was 3½ years old and by 4, she could read with the help of pictures.
Looking back, Dr Azalina said it was a challenge to educate herself on how to teach and understand her child.
When the family returned to Malaysia in 2012, getting Daniea educated was a huge challenge.
“Daniea was 7 when we came back. It was frustrating to see and experience first-hand the lack of support for autism. We had to do our own investigations and, eventually, we found the National Autism Society of Malaysia (Nasom), which led us to a speech therapist from Universiti Kebangsaan Malaysia who could help Daniea.
“We then enrolled Daniea for a year in a class for autistic children run by the society, thinking that it could be a springboard to mainstream education, but discovered that we had to register Daniea with the Education Ministry’s special education integrated programme.
“In August 2014, she was required to attend a three-month probationary period to assess whether she could continue her studies in a mainstream school.
“Thankfully, it worked out well and Daniea is actually very happy being in a class with younger children, whom she interacts with better compared with children her own age.”
Daniea is now 11 and studying in a mainstream school in Malaysia with the help of a teacher aide from Nasom, thanks to the unflagging efforts of Dr Azalina.
As Daniea is autistic, she is placed in Year 3 and is taking four subjects — Maths, English, Bahasa Malaysia and Science.
Dr Azalina also feels strongly about expanding Daniea’s interests by enrolling her in activities that she likes.
“She likes swimming, drawing and singing.”
Her message to mothers with autistic children is to continue to discover the potential in their children.
“I keep pursuing ways of understanding and learning about my daughter because I want her to reach her full potential, be happy and lead an independent life.”
Komathy Venugopal, 45, and Akhilan, 12
Komathy Venugopal had never heard of Down’s syndrome when a doctor told her that her baby had the condition.
“I was 33 when I had Akhilan, and after delivering two normal children, I wasn’t expecting a child with special needs, so I was initially shocked and upset.
“The doctor had to explain Akhilan’s condition to me. After that, we moved on to the next step and learned to care for our child.”
Raising a child with Down’s syndrome required Komathy to learn as much as she could about the condition.
She searched and read articles on the Internet, as well as networked with other mothers with Down’s syndrome children.
“I also joined the Penang Down Syndrome Association to keep abreast of latest news and developments. They also have more facilities and activities for the children.
“In our hometown in Sungai Petani, there is no association dealing exclusively with Down’s syndrome.
“I go to Pekaka, a parents’ support group for children with special needs.”
Komathy’s husband and their other two sons help in taking care of Akhilan.
“His father takes him to school every morning to attend a class for special needs children at SJK(C) Lin Khay, Bandar Seri Astana, Sungai Petani.
“His older brothers are very protective of their little brother and look after him.
“They understand that I need to spend more time with him because he is different.
“Akhilan learns things at a much slower pace than a normal child, so repetition is necessary to help him retain knowledge or skills. Sometimes, I need to tell him something 20 times for him to remember.”
Besides wishing all mothers a happy Mothers Day, Komathy would like to encourage mothers who have children with special needs to persevere.
“Be patient and have faith. God knows you are the right parents to look after these special children.”