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Monday January 14, 2013 MYT 12:00:00 AM
Monday April 22, 2013 MYT 5:49:16 PM
by vanes devindran
PARENTS Fong Soon Hui and Chan Yian Choo have gotten used to public stares each time they bring their little girl, Carlyne, out on a family outing.
They have also worked out a great support system between them to ensure that their daughter receive the attention and care she needs.
But there is one thing which the couple still grapples with to this day — how to tell if Carlyne is in pain each time she falls ill.
Indeed, not being able to recognise if their child is in pain or not is pure torture mentally and emotionally for any parent.
Unfortunately, this is one of life’s curve balls that parents of a cerebral palsy child have to learn, face and bear.
“For me, this is my frustration. When she falls ill, she cannot express to us how and what she feels. So we are constantly on edge. Is she getting better? How is she feeling now? Does she need anything else to make her feel comfortable? Things like that run through our minds. This is perhaps the most difficult thing I face as a father,” Fong, a 33-year-old sales executive told The Star in Kuching recently.
Carlyne was diagnosed with cerebral palsy soon after she was born six years ago. It was a bitter pill to swallow for Fong and Chan, who is an accountant.
According to Britannica Concise Encyclopedia, cerebral palsy is paralysis resulting from abnormal development or damage to the brain before or soon after birth. Cases are of four main types: spastic, with spasms contracting the extremities and often also with intellectual disability and epilepsy; athetoid, with slow, changing spasms in the face, neck, and extremities, grimacing, and inarticulate speech (dysarthria); ataxic, with poor coordination, muscle weakness, an unsteady gait and difficulty performing rapid or fine movements; and mixed, in which symptoms of two or more types are present.
As Carlyne is Fong and Chan’s firstborn, the couple soon found themselves trying to both cope as first-time parents as well as learn how to provide special care for their daughter.
Keeping their hope alive, they seek help from Sarawak Society for Parents of Children with Special Needs (Pibakat) and also put Carlyne in physiotherapy sessions in a private centre.
However, it was only when they discovered Wishesland that Carlyne was at her happiest.
Located at Jalan Crookshank in Kuching, the centre was founded by a group of volunteers and parents with cerebral palsy children.
Incorporated in 2009, the centre provides physiotherapy, learning and care for these children with the involvement of parents.
The Fongs found Wishesland to be ideal as it also provides a strong support for other parents in terms of encouragement and motivation.
“Looking after a child with cerebral palsy can be mentally, emotionally and physically draining. You need a lot of patience with them so it was heartening to hear about the experiences of others. We have other parents encouraging us not to give up as their children had shown progress. This keeps our hopes alive,” said Fong.
He also found that Carlyne is much happier at Wishesland because the physiotherapy and learning sessions were interactive and emphasise bonding.
He said this was unlike her previous treatment at a private centre where profit was the bottom-line and all sessions were rushed.
Chan said they also noticed that Carlyne looked much healthier and more cheerful since she began at Wishesland.
“Before, she would be unhappy each time she had to go for physiotherapy but now, she would smile when we tell her it’s time for lessons at Wishesland. She used to sleep all the time but nowadays when we tell her it’s time ‘for school’ (meaning Wishesland) she would be wide awake as if she’s looking forward to it,” she said.
Chan said as a parent of a cerebral palsy child, one needed to keep hoping that anything was possible and there was indeed a chance of a miracle if one believed.
“People used to stare at us when we took Carlyne and her (younger) sister, Yannis, out on a family outing. It used to bother us, but not anymore,” he said.
“To us, bringing Carlyne out is in a way showing to society that there is nothing to be ashamed of having a cerebral palsy child.
“It is also for showing that the child has every right to be treated like other children instead of being locked up in a room.
“As parents, you need to accept and love your child, and only then will you know happiness.”
He finds it sad that there are people who are ashamed of their child ren who have cerebral palsy.
“I know of someone who never told anybody that he had a child with cerebral palsy until he saw how we took care of Carlyne and how we brought her on our family outings. It was only then that he admitted feeling ashamed. It’s just sad. They (children) deserve your love and patience,” he said.
Like the Fongs, Fu Kuek Sin and Then Yien Yien’s third child also has cerebral palsy.
Toddler Delbert Fu was diagnosed with the condition soon after he was born. It is said that, like Carlyne’s case, it could be due to lack of oxygen during birth.
“I remember being in pain and the baby was in distress for quite some time before doctors decided to perform C-section on me,” said Yien Yien.
“After that I was told that my baby had been rushed to the intensive care unit (ICU) and there was 50-50 chance of him surviving.
“Every thing turned foggy afterwards for I didn’t know how to react to the news.
“When we went to see him, he was always asleep. There was no crying. He spent three weeks in the ICU and we were later informed that he had cerebral palsy.”
The couple, who runs a food stall, said they were determined to reverse any damage suffered by their son.
They even tried out Chinese traditional medicine, a treatment which they soon stopped for it was not helping one bit.
It was then that a doctor they visited suggested that they check out Wishesland.
Fu and Then wasted no time in seeking help at Wishesland and the results were amazing.
“He moves well now. When we communicate with him he watches us, and he understands what we try to tell him. He also recognises that I’m his mother and he knows who he is,” said Yien Yien.
“Ever since Delbert started at Wishesland, his episodes of fits have also become less frequent. The last time he had one was in August last year.”
Fu said his son could even laugh now when he played, and his senses were active.
“Never give up. There is always hope,” he said.
Wishesland’s full-time physiotherapists, Lines Landei and Agnes Winnie, pointed out that their sessions with the parents and children focused on physiotherapy, games, academic and daily-life activities which encompass the basics like how to use eating or drinking utensils.
They said the children who came to Wishesland very often showed vast improvement in terms of response and sensory movements.
“We incorporate what a normal child would learn at each stage of their development. The difference here is that it takes a longer period for a child with cerebral palsy.
“They will soon get the hang of it with constant physiotherapy and learning sessions. We just need to take a step at a time,” explained Lines.
Wishesland president Chi Poh Yung said they hoped to eventually be a one-stop centre for all cerebral palsy children and adults in Kuching and Samarahan divisions.
The centre is supported with funds and other donations from well-wishers, and its current building was donated by the state government.
“This year we are planning to build a swimming pool called ‘WishesFun Pool’ so we can start hydrotherapy for the children.
“We have already secured the sponsors for the pool including its supplier, so what we are waiting for now is approval from the state government,” he said.
He said at the moment, Wishesland kept its fees at a minimum, so parents need only pay RM50 per month for two sessions per week, and RM100 a month for those with daily sessions.
To meet the operational cost which is around RM4,000 a month, the centre still needs public generosity and support.
It is learnt that from last year’s Wishesland Nite, the centre was able to raise some RM100,000 and it hopes to raise more in future.
Wishesland can be contacted at 082-252 210, 016-889 9428 (Chi), and 013-801 9676 (Desmond Hii).
The centre can also be reached
via email at firstname.lastname@example.org.
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Community, News, Family & Community, cerebral palsy, wishesland
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