“When I was growing up, I was bullied. They asked me if I was a robot because of my hearing aid. I kept silent. I went back home. My parents told me: accept, work hard, persevere. I kept studying hard to earn that honour.” These are the words of Chong Kai Zhen, a deaf speaker who participated in World Speech Day 2021. Like other hearing impaired individuals, Chong has to work extra hard to break through barriers.
Watching Chong present his speech reminded me of Rina, a mother to two children born with Down Syndrome. “People make all kinds of remarks. Someone even told me that I have these children because my husband and I have sinned.” It surprises me how much we parents can be so judgemental of each other. How unkind. The very idea of God punishing innocent, helpless children just because their parents had erred! Is there such a thing as the perfect human being, someone who isn’t flawed, made mistakes in some way? Is there such a thing as a cruel God? Not in my belief system and I hope, not in yours either. We are all guilty of making one kind of oversight or another; this is the reason why we are known as humans in the first place.
If you are the parent of a special needs child, God must have given you the ability to raise such a child. “Special needs children are for special parents,” says Dr Siti Rokiah Siwok, a senior lecturer at a university in Malaysia. Dr Rokiah is the proud mother of a 40-year-old lady with profound hearing loss, now a teacher. Dr Rokiah, or Kak Rokiah, as she prefers to be called, shared her experience in a recent webinar I helped facilitate. I asked Kak Rokiah how she succeeded at parenting her daughter. “I try to do my very best as all kind acts are ibadah (worship of God),” she says. “My dream is to set up an international Islamic school where children with hearing loss are part of. Everybody has the opportunity to thrive and blossom according to their abilities and interests.”
According to pediatric psychiatrist, Dr Aminah Kassim, one of the issues that she encountered in helping parents with special needs is denial. It is much better if intervention is introduced in the early years as the brain is still developing. “There are cases where exasperated parents physically and emotionally abused their special needs children because they thought these children are lazy and simply refuse to cooperate,” says Dr Aminah. Which goes to show how important it is for parents to empower themselves with accurate knowledge, as it can make or break your child.
“To all the parents who have special needs children: you are not alone. It is important to be in touch with other parents who face similar challenges. Knowing that there are other parents out there struggling as much as you do can help alleviate your stress level. Know that you do not have to be perfect. Taking care of yourself is very important, you are not a bottomless pit,” says Mr Ahmad Fitri Isahak, President of Dyslexia Malaysia, also a panelist in the webinar. A dyslexic, Mr Fitri is all too familiar with the challenges faced by a son of his, also a dyslexic.
I still cringe whenever I recall the story of the mother who was told her children are born with Down’s because of the sins committed by her and her husband. Even with the best nutrition and the best environment, a child with special needs could still be yours. It’s nobody’s fault. I truly believe that special needs children is a good reason for the community to work together to bring out the best in them and in ourselves. Just because I don’t have any special needs child doesn’t mean I shouldn’t care.
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