A mother’s love knows no bounds

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Jervis learns to stand, ease the stiffness in his leg muscles, and strengthen his neck and hands with the help of his therapist Agnes Winnie.

THE problem of raising a child with cerebral palsy (CP) has actually become a special joy for a 43-year-old mother from Kuching.

“It’s about the little things. Every time I see him reaching an inch further than before, I am overwhelmed with happiness. For example, if today he can do a little more than yesterday, it’s something that gives me utter joy to watch — a privilege that not many get to experience,” said Chong Mui Na.

Her son, Jervis Chi, was born with CP. He is now 12 years old.

Chong is happy to share that Jervis has displayed some positive developments in learning and communication after going to a special school run by the Association for the Welfare of Intellectually Disabled Children (Perkata).

She can see that the language and speech therapy have helped him a lot, as he can now better express himself.

As the mother of a disabled child, Chong is proud to note that Jervis is coping very bravely and not letting the challenges he is facing get him down.

“He looks determined enough to want to overcome them the best he can. His fighting spirit gives us hope. He is a happy boy who’s always ready to try something new,” she said.

Chong described her son as funny, smart, determined, and kind-hearted, saying although his muscles could not function well, it did not mean his brain could not function well too.

In many cases, she pointed out, CP does not affect the cognitive functioning of the brain.

Because of her son’s condition, Chong said she and her husband made a special effort to learn as much as possible about this congenital disorder of movement, muscle tone and posture.

According to medical authorities, cerebral palsy is caused by loss or impairment of motor function due to a group of permanent movement disorders.

Signs and symptoms vary. Often, these include poor coordination, stiff muscles, weak muscles and tremors. There may be problems with sensation, vision, hearing, swallowing or speaking.

Most frequently, the problems occur during pregnancy, childbirth or shortly after birth.

Risk factors include pre-term birth, being a twin, certain infections during pregnancy such as toxoplasmosis (a parasitic disease) or rubella (German measles), exposure to methylmercury (poisonous form of mercury) during pregnancy, a difficult delivery, or the problem could be caused by a head trauma during the first few years of life.

Chong said she suspected Jervis might not be normal after he was born because she had quite a difficult delivery, adding that he was later diagnosed with dystonia (a neurological movement disorder syndrome which may resemble a tremor) and athetoid or dyskinetic cerebral palsy.

According to medical authorities, in one in six cases, cerebral palsy causes involuntary muscle spasms and unwanted movements — described as dystonic cerebral palsy or dyskinetic or choreoathetoid cerebral palsy.

Symptoms associated with dystonic cerebral palsy are usually muscle spasms which could be difficult to control and sometimes even painful — a result of incorrect signals coming from the brain.

Athetoid or dyskinetic cerebral palsy (ADCP) is a form of disorder, marked by involuntary movement and caused by damage to the brain’s basal ganglia for submitting messages to the body to help coordinate and control movements. When this is damaged, voluntary movements are compromised, resulting in spasticity and other abnormal movements.

Chong hoped more programmes would be organised to create public awareness of CP.

She pointed out that there are already quite a number of activities focused on cancer, autism and down syndrome but none on CP so far.

Considerate and supportive

Chong said society at large is quite considerate and supportive towards those who have loved ones with CP.

“Not one of my family members, relatives or friends has ever made me feel hopeless with negative remarks. People even try to talk, joke and play with my son when they meet him. And he is responding well.”

She believes it is the inner peace she gets from Buddhism, which gives her the strength to see purpose in life.

“I have been fated to be the mother of Jervis. It makes realise there is a reason for everything — so there must be also a reason why I have Jervis.”

Chong said with a place like Wishesland — a non-profit organisation providing counselling services, rehabilitation and consolidation treatment to children with CP as well their families — no one should be left to face the affliction alone.

At the centre those in the same situation can come together for fellowship and mutual support, share experiences and knowledge to motivate and help one another.

Although no proper CP support group has been set up like the one for Parkinson’s, Chong said Wishesland is more or less serving that role.

She said although looking after her son is a full-time job, she makes it a point to have some personal time to rest and enjoy the quiet moments, adding, “This is to create a sense of balance, reduce stress and regain the spirit and energy to care for my son even more.”

She advised others in her shoes not to be too hard on themselves but give some time to de-stress and learn to accept the realities of life that are beyond their control.

Not a good idea

Chong suggested it is not a good idea for families with disabled children to solely depend on outside carers.

She said children could feel a big difference between care given by their families and others.

For her, life has changed after she had a child. She used to be outgoing and did pretty much what she liked. But now she would think twice before doing anything — and invariably, Jervis is a priority in her plans.

She is happy she has found a semblance of balance in her life — more time for herself, at the same time, letting her son learn to be more independent by mixing with friends in school.

Of course, she will continue doing their favourite things together such as watching TV, window shopping, and eating out.

Chong has noticed Jervis would laugh louder when there is someone watching TV with him.

She said because of his limited capability to move, he finds light activities like watching TV or playing games on the iPad more suitable and enjoyable.

Sometimes, she would read stories to him.

Chong and Jervis during a physiotherapy session at Wishesland.

Soldiering on

Chong said at times when she felt down, she would keep telling herself no matter what, life has to go on.

To occupy herself, she would read, meet friends and attend spiritual talks. She believes religious support is crucial for her and her family, and makes sure she lives life to the full.

On taking care of Jervis, Chong said it was quite tough when he was still very young.

He always cried and she and her husband did not know how to handle his tantrums, “partly because we didn’t understand what he wanted and weren’t sure how to communicate with him”.

Chong said over time, they learned to understand their son better and Jervis also learned to understand more things.

It has now become easier to look after him because of better communication, she added.

What Chong still has to struggle with is feeding Jervis because he is unable to eat properly by himself due to his inability to control his muscles.

She said sometimes it takes a long time to feed him.

On medical treatment, Chong said Jervis has to go for regular follow-up treatments at Sarawak General Hospital where he gets botox for his hamstring and undergoes stretching exercises to relax his muscles.

“We may not be able to take care of Jervis forever. We’re trying our best to do everything possible for him. I always look forward to the day when Jervis will be independent and able to take care of himself. Only then, will I, as a mother, have peace of mind.”

Recalling her feelings when she was pregnant with Jervis, she said she was happy and excited.

But then she paused, as if trying to fight back her tears, before continuing, “Nobody has any control over what is not expected. I just have to accept my fate.”

Not marginalised

Chong said she did not feel her son is marginalised, adding that most people are sympathetic and caring and no one ever seemed disturbed or upset by his condition.

When the family went travelling, the airport staff, aircraft cabin crew, and taxi drivers were all very helpful, she added.

“Of course, at times, some people might look puzzled for a while, perhaps wondering what happened to Jervis.”

And if Chong does get asked about her son’s condition, she does not hesitate to explain.

She hopes people with CP would be treated like everyone else because they are actually smart and also have feelings.

“One important thing is parents with ‘normal’ children must educate them to treat everyone equally. They must tell their children to never bully those who may be different.

“I’ve heard of some isolated cases where the weaker or different ones in school sometimes get bullied. This is very sad indeed.”

Chong advised parents with CP children to be patient, understanding and never give up easily, saying they must believe their children could make progress with constant therapy although it may be a long process.

“They cannot expect speedy progress but instead treat every little step of improvement as an achievement to rejoice over.”

Talking to Jervis

thesundaypost also spoke to Jervis and though he could not speak clearly, he shook and nodded his head in response to questions asked — which was sufficient to reveal what he was trying to say.

In brief, Jervis indicated he likes going to school because he can meet many friends. And in school, the activities he loves are body exercises, singing, dancing and colouring.

His favourite subjects are English, Mandarin and Bahasa Malaysia, but he does not like handicrafts or very active games. Above all, he loves all his teachers.

Outside school, Jervis likes watching educational TV programmes, besides cartoons and action movies — and his favourite actor is Jackie Chan.

On food, he indicated he likes chicken rice, ice cream, grapes and oranges, but not vegetables all that much. He likes sweet drinks more than plain water.

Jervis loves animals, especially pandas and horses, which is why he enjoys going to the zoo. He hopes to see orangutans one day.

He also indicated he likes going to the beach to play in the sand and seawater.

Love and devotion

Wisheland president Chi Poh Yung said what CP children need most would be immeasurable love and devotion from their families and understanding and empathy from society.

“That’s the reason Wishesland is here for CP children and their parents, and hopefully, it will continue exist for them.

“We fight for their right to be respected, well treated and given the same opportunities to live in dignity in our society,” he explained.

According to Chi, CP is not curable but treatable. It is non-progressive — meaning it doesn’t get worse over time. It’s not a disease and certainly is not infectious.

He said his organisation’s success is due mainly to the enormous contributions, dedication and sacrifices of volunteers and Wisheslanders.

On treatment, he said it depended on the type of CP, severity of symptoms and at what stage treatment was initiated.

Treatment includes physical therapy to develop strong muscles; occupational therapy like helping CP children to develop fine motor skills such as dressing, feeding and writing; speech-language therapy, focusing on developing communication skills; as well as chewing and swallowing techniques.

“I also wish to point out that for CP children, it’s the best if they can be sent to our centre for treatment without undue delay because we are racing against time — the later treatment, the slower the recovery.

“For parents out there, I want them to know we are in a marathon race. A CP child needs a long-term treatment programme.”

Citing an example, he said a Johor couple with a CP daughter came to Kuching recently to share their experience.

“The mother spent five years just teaching her daughter to write the number ‘1.’ That shows how loving, caring and patient the mother is.

“Now her daughter can be independent, in a way. When the couple came to Kuching, the daughter was left behind with the family members. She could help herself with eating, drinking and bathing.”

Chi also revealed Wishesland now has a very experienced part-time physiotherapist from Taiwan.

Among her duties are educating parents on their role in taking care of their CP children, showing parents some basic movements to treat their children at home, looking into the facilities and helping with rehabilitation programme at Wishesland where there are a total of 86 members, including 44 CP children, so far.

Wishes Magick Garden

On the Wishes Magick Garden project, he said a garden architect with over 30 years sculpturing experience, has been engaged to build four sculptures at RM3,800 each.

“We welcome anyone who wants to ‘adopt’ the sculpture by donating RM3,800 for each one of them. The sculpture will be named after the donor. Maintenance is our responsibility.”

The main objective is to create an environment that stimulates and balances the children’s physical, cognitive and emotional growth as well as provides a platform for them and their families to interact and share their feelings before or after children have gone through the various activities at the centre.

Wishes Magick Garden has three zones — Wishes Welcoming and Social Zone, Wishes Sensory-cum-Play Zone, and Wishes Meditation-cum-Aromatherapy Zone.

Chi pointed out that despite the construction of Wishes Magick Garden and the operation of Wishesland, they were also doing their best to conserve the existing structure of the building known as White House Sri Sebandi, constructed during the time of

the second Rajah of Sarawak Charles Brooke in 1899, and gazetted as a heritage building under the Sarawak Culture Heritage Ordinance 1993 in June 2007.

“It’s our responsibility to maintain the values of the existing building in line with its heritage status. We also aim to make it a tourist attraction. As for the garden, once completed, it will eventually be open to the public.”

Chi also said Wishesland recently signed a memorandum of understanding (MoU) with Noble Regent Pledge (NRP).

Through the MoU, NRP will be able work with corporate citizens and also appeal to them to donate a small amount of their corporate social responsibility funds to enable Wishesland to continue its mission to heal CP children.

“We will name one of our zones in our garden after the donor  company,” he added.