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Tze Yeng

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I am a parent of a deaf child. My second child, Neil has a malformed right ear with severe hearing loss. We soon found out that his left ear is progressively losing hearing. He may eventually experience a hearing loss in both ears and be completely deaf.

A Parent’s Denial, anger, bargaining, depression and acceptance

Learning that my child has a disability was crushing. I experienced the emotions articulated in the Kübler-Ross’s model of death as I mourned the loss of a “normal” child.

In denial, irrationality ruled. We bought Earwells ear moulds in hopes that we could fix the malformation despite being advised against it. (Our intervention was too late) We did this as we had prior success in reshaping our elder child’s slightly deformed ear with  Earbuddies, an ear splint.

In sadness, I put on a false face of courage – I texted smiley laden messages that we now had the opportunity to learn a new (sign) language! Only to weep in fear that he would be bullied for the rest of his life.

In inexplicable anger, I was also mad at my husband, for his experience with progressive deafness meant to me that he could navigate this pain better than me.

The moment of dread, acceptance, relief all rolled into one was when I submitted the forms for my child’s Orang Kurang Upaya application. There! Neil has a disability in the eyes of society.

Neil doing what he doing what every Malaysian child does best – scale the house grills with his cousin.

The light does shine through the cracks

Initially, we grew his hair long to cover his malformed ear. I kept his deafness known to close friends and family. My husband was more open about it as he came from a family of six siblings where five have hearing disabilities. Our incredible support system kicked in to connect us with medical experts and hearing aid distributors, sign us up for newsletters for families with deaf children and lug books on parenting deaf children that we ordered. One friend even bought us an entire set of sign language DVDs for children.

When Neil was about one year old and ready for a hearing aid, we cut his hair short to fit the band. As I became a better advocate for our child, a wider circle of parents who have children living with a diverse range of disabilities offered their stories, opened up their hearts, bottles of gin, and a lifeline. Their sincere and consistent acts of trust and kindness provided solidarity and the occasional intoxicated respite.

Neil, three years. At a his weekly playdate. He is shown wearing his Bone Conduction Hearing Aid.

Forming the deaf child

His speech remains the key concern and source of light-hearted moments. As speech is guided by what one hears, Neil speaks with a high pitched distorted voice as he imitates the electronic feedback from his hearing aid. He also has problems discerning the “s”, and “sh” sounds. During one bedtime, I kept rejecting his request to “sit on me” as we just had a jujitsu playfight that evening. It was only after a few tries that I realised that he wanted his “sheet on me”!

He also has trouble discerning the appropriate volumes of speech, and so I usually get woken up when he thinks that he is ‘softly’ waking up his deaf father up (yup, another oxymoron!). This inability to discern volume has also brought Neil to falsely believe that he has succeeded in quietly scaling the kitchen cabinet in pursuit of the sacred snacks, when I have heard every thump and bump.

The search for a long lasting working relationship with a speech therapist proved to be the most difficult. We are now at our fifth speech therapist, having worked with both the public and private sector.  We faced systemic and structural challenges. There was the inability to secure follow up appointments and dissatisfaction at the level of cooperation that his holistic intervention required. And in an extreme case, there was a disappointing lack of accountability by the therapist and her organisation. Needless to say, going the private route is also financially straining.

And still the deaf child sings…

Neil circa September 2016. Catching them all with his community of Pokemon fans.

Nevertheless, we are grateful for Neil’s community of adults and children at his school, our neighbourhood, our family and support system. They have been contributing towards a key development for Neil – his confidence. The community whose love, kindness and acceptance that is continuously forming this daring, caring, persevering, fun-loving cheeky child.

They, who have patiently listened to him, engaged respectfully with him about his ear and his hearing aid, and become his Ninja/Jedi teammates. The community who listened to him as he demanded initiated and lead a rendition of ‘Happy Birthday’ in Mandarin to a room full of people he hardly knew at a family friend’s sixtieth birthday party. They, who listened to this singing kid with the funny ear and speech. And they, who cheered.

 

Photo credit: Tze Yeng – Neil’s mom

The euphoria felt by many Malaysians post-elections is transforming into a spirit of rebuilding the nation. Here are some issues that parents, including me, want the Pakatan Harapan government to take action on.

Caring for the Next Generation

Urgently, the new government needs to reform laws and policies to better protect children living in Malaysia. The marriage of an 11-year-old girl to a 41-year-old man  have mobilised outraged Malaysians to demand for the minimum age for marriage to be 18 for both Muslims and non-Muslims in Malaysia. The issue of poverty, the real costs of child marriages and crucially, awareness on sex and sexuality also needs to be looked at on a macro level, away from the on-going religious debate.

Guidelines Credit with Permission: Katrina Jorene Maliamauv, 2018

Following the tragic death of five-month-old Adam Rayqal Mohd Sufi under the care of his babysitter, makchic readers have highlighted the need for tighter certification and regulation of childcare centers in Malaysia. In comments to makchic, parents said they want staff who are screened, trained (and routinely retrained) and certified. Makchic reader Satvinder Kaur said there is a need for these childcare centers to have flexible hours. This would better serve parents who hold shift jobs, such as those working in restaurants and hospitals.

Makchic readers also called for the government to holistically look at its policies to support families. Firstly, through increasing maternity and paternity leave and ensuring that the jobs are still available upon return. The government should also provide tax breaks for employers to provide crèches. It should also enact policies to ensure that employers subsidise their employees’ childcare. Reader Joanne Ko goes further. She calls for the close monitoring of employers to ensure they fulfil statutory obligations in supporting employees with families.

How we treat the marginalised in our everyday lives

The new government has done well in recognising housework as ‘work’ in their move to provide for housewives through the Employees’ Provident Fund (EPF). However, the government should broaden its recognition of others who perform care work. Daughters, aunts and female cousins will benefit from tax breaks and/or subsidies and EPF.

M, a single mother of two, had to pull her two sons out of school to fulfill her filial duties. She would have benefited from some state support. Additionally, there should be mandatory EPF contribution by employers for the thousands of mostly foreign domestic workers performing this undervalued care work.

As a nation of migrants, we also need to start treating migrants with dignity. The current outsourcing system is rife for forced labour and human trafficking, with the powerless migrant workers vulnerable during immigration raids.  The government needs to also keep to its election promise to ratify the 1951 UN Refugee Convention and its 1967 Protocol by the government towards upholding the rights of refugees and asylum seekers living in Malaysia.

A message from a public awareness campaign in 2012. How far have we gone? Image credit: www.thestar.com.my

“A nation’s greatness is measured by how it treats its weakest members” – Mahatma Gandhi

Children With Special Needs

Another group of people that the government needs to pay additional attention to are those with special needs. Azian Mohd Hanafiah, a mother of two autistic sons is understandably concerned for her sons’ future. She calls for policies to improve the education and services for children with special needs, so they can be employable. She also demands for legislation to ensure that corporations employ people with special needs. The government should also provide additional tax breaks and allowable leave allocation for caregivers of children with special needs. Lastly, they should look into establishing an endowment fund together with these parents.

As a parent with a disabled child, I echo the call for the government to regulate this area. Just as the Malaysian Medical Council ensures the professionalism of doctors in the interest of protecting the public, there needs to be accreditation and regulation in the developing helping professions. We need to regulate fields such as psychology, speech therapy, occupational therapy and clinical psychology to prevent malpractice and negligence. The government also needs to urgently relook their conflicting role as a public healthcare provider, regulator and private healthcare investor. The Malaysian public that depends on the public healthcare system needs an increase in the current quality of care.

 “It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” ― Audre Lorde

Education and Critical Thinking for Our Children

Teachers at SK Felda Pasoh 2 in Seremban held a mock election. This was an effort to expose the children to how democracy works.  Image credit: malaysiandigest.com

Our newly appointment Education Minister Dr Mazlee Malik is on the right track with his vision of nurturing children as critical thinkers. Most parents I spoke to agree that the public schools should also be a place to form the identity of a Malaysian, which includes understanding how democracy works.

The conversations on democracy, freedom and marginalisation need to flourish. Our historical GE14 has shown that critical thinking combined with action is crucial. The government needs to go further in repealing repressive laws such as the Security Offences (Special Measures) Act 2012 and the National Security Council’s Act.

Accountable Leadership

There were probably many conversations within families during the election about what makes a good leader. As a parent, I look to the government to demonstrate accountable leadership. The government is keeping its promise to repeal the Universities and Colleges Act and the repeal of the Anti-Fake News Bill. However, they have not fulfilled their pledge to ensure that at least 30 percent of policy makers are women at all levels of government. This is important because more women in decision making position has been proven to improve the efficiency of local governments and of corporations.

We are at the beginning of a long journey. With the energy fueled by a taste of democracy, together, we are going to get there.


Editor’s Notes: 

In light of the recent tragic and disturbing news in Malaysia involving children and women, makchic will be writing a letter to our new Women, Family & Community Development Minister with our hopes and wishes for this New Malaysia of ours.

We’d like to ask Malaysian mums: What would you say or wish for? How do you think women and children could be better protected and supported in our country? What do you think needs prioritising?

Write to us or message us, we would love to add your comments or suggestions.

The kids in our family ‘talk back’ by our ‘Asian standards’.

Scene 1: Mom is desperate to convince the reluctant eight year old to learn Mandarin.

The unwilling kid ‘talks back’: “Mom, my goal is to work in NASA in the United States. By the time I work there, people will be speaking more Spanish than English. I should learn Spanish instead, and drop Mandarin”.

Mom tries to stifle guffaws and acknowledges the factual accuracy of the demographic projection.

Mom also  looks up the most desirable space agencies to work with together with said child. Mom still hopes it is one where he has to be proficient in another language.

Scene 2: Mom forgets to bring a snack when picking up the six-year-old after school.

Hangry (Hungry + Angry) kid shouting: “Mom, you are not being caring. You are forgetting the global goals of zero hunger! We have to go to the school café now to get me a snack.”

Mom acknowledges the son’s anger and reminds the son to say his “please” if he requests for something and not shout.

Mom engages with the child on the issue of poverty and socio-economic inequality.

How Dare you Talk Back to Me

Our kids may seem disrespectful to some.

However, we also view our kids challenging us as a way to engage with them, their learning, and our own learning. With more evidence pointing towards the neuro-plasticity in the ability to change our brain support learning, it is important that we model a growth mind set. It is thus important that as parents we model ongoing learning, and an attitude of perfecting the practice.

We also view this as learning to disagree agreeably. After all, a crucial skill in carrying out our professional and personal life is collaboration skills that require the exchange of ideas in a logical, rational and passionate manner to persuade and convince.

Let us Talk about this

I believe that children are natural critical thinkers. They are also curious beings, which explains why drains can be so interesting to a four year old. Our role as parents is to nurture their curiosity and critical thinking. The challenge, however, is to keep the exchanges and disagreements polite. Our family practices trying to turn heated agreements into loving exchanges by reminding ourselves:

That it is Not about Winning

The sign “Your Reaction is More Important than Who Is Right” hangs in our home. Winning an argument by shouting is not approved our family. For parents and kids alike.

To Stop and breathe

Like any human being, kids will naturally protest and argue if they are moved away from a pleasurable activity – like reading or playing. Clashes often happen when parents need to keep to schedule and get the kids moving.  We practise transitioning from one activity to another by agreeing on a set time, and setting the timer. When the timer rings, we (get a bloody) move on.

A Calm Corner

We have a corner in the house with a comfy chair. One kid decorated the big ‘calm corner’ sign, whilst the other invited an invented a ‘calm-angry-ometer’ using recycled material. We go/get sent there to calm down, take a break from the discussion. It has worked most times.

Ask “Is this a good fight?”

We tell our kids that our role as parents is to keep them safe and healthy, and there are areas that are non-negotiable. However, we also try to balance our family principle of challenging authority with the incessant contrary behaviour of children pushing the boundaries. This question is asked by way of stopping and thinking, before engaging in a potentially heated discussion.

Chatting Time

We try  to develop a deeper connection with our kids during those precious moments at bedtime, when the lights are off. We talk about the day, and what we are grateful for. This is where important aspects of our child surface, like the challenges they are having with a friend, or a big question about God. Having the lights off also works to mask a puzzled or annoyed look that can be quickly neutralised by a caring response.

We hope that more than ever, keeping our children engaged with us in their many ways will keep their communication channels open with us. For when the struggles in life gets hard, they know they can always, always turn to us by talking back.