Ad
Category

Special Needs

Category

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