Have you ever wondered what it’s like for parents to raise special children in other parts of the world? We certainly have and were enlightened when we received this beautifully crafted article from Siti Zulaiha who lives in Singapore. Though she is located at the other end of the world, her feelings hit home with us, as she struggles to get her child the support he desperately needs. Please take a moment to read it and leave a comment.
Maybe he’s late because he’s the youngest or maybe we pampered him too much or maybe he is just not ready to talk yet. I wondered. Why doesn‚t my son talk when he was already 2? Why does he always find it hard to go to sleep no matter how sleepy he was?
I decided to do my own research on sleeping difficulties but I came across Autism instead. That was when my world came crumbling down. Everything suddenly fell into place. Every research I did was talking about my precious handsome boy. I told my husband first and I cried every day and night. Next I told my family. I do not see a point in keeping my son’s special need a secret. I need all the support I can get. I need more information. Others may be able to help me. Slowly, I gained strength. I switched my brain to focus on helping my son. I want him to not feel as if he‚s alone.
It was not easy and it is still not easy. My tears are welling even as I composed this article. Even after more than a year of his official diagnosis, my heart still breaks and my wound is still bleeding. I do believe that I have progressed a lot. I do not blame anyone anymore. I do not try to find the cause of it anymore. No time should be wasted. My readings shows that autism has a high chance of learning abilities if detected early. We have already enrolled our son to join EIPIC ˆ Early Intervention Program, run by MCYS ( Ministry). The waiting list is terrible. There are more autistic children than EIPIC centers. All research shows that autism is best tackled before the age of 3. My son was almost 3 and nobody is giving him any places. I emailed Minister Vivian Balakrishnan for help. MCYS contacted me but told me they could not help me. I cried and begged them. I shouted at the officer who called me. Time is running out. They finally offered to put my son’s name in 2 EIPIC centers. But I still have to wait.
While waiting, I do what I can to learn more. I attended a few talks and courses to understand Autism. My colleagues shared with me lots of information. One of them was even a Special needs educator. She passed to me all her books and PECS – Picture exchange communication system, even before I knew about PECS. We practiced PECS even till now.
One seminar I attended was by Dr Wendy Lawson, a PhD in Psychology. She has autism and her husband and 2 sons are autistic as well. She opened my heart to understand autism in a different way. Autism is not a disease or a disability. It just meant they are humans with a different view in life. Problem arises when they do not understand our views and rules. Thus that‚s what therapies are for. She explained the pain of having to deal with Sensory issues. It’s as if their 5 senses are superpowers. All these information are embedded in my mind. Now I know why my son may not like to step on sand or why he flapped his arms.
When EIPIC still did not have any vacancies, I tried to put him in private EIPIC centers. The fees are exorbitant. The fees are literally unaffordable. It ranges from $2k-$3.6k per month. We are average income holders. Yes, we do live in a 5 room flat and are fortunate enough to afford a car and a maid. We are living a comfortable life, but there’s no way we can get an extra $2-3k a month for his therapies. We were unable to sell the car off yet. We couldn‚t downgrade our flat because we just moved in. EIPIC by MCYS was our only hope. Nobody is hearing our pleas.
Once my son has been given a placement in EIPIC, the world becomes brighter. He is so smart. He even starts to talk now. The sweetest word that came from his lips was “Mom.”
EIPIC, however effective, till now could not afford to give each child the recommended hours of therapy each child need. It is recommended that each child needs 33 hours of therapy per week. My son is currently receiving 10 hours per week. Because of the long waiting list, desperate parents went out all the way to try other things for their children. We tried methods which were not recognized such as craniosacral therapy and special diet. We make our children guinea pigs for their own good.
Society is cruel to those who are different. A society is made up of individuals. These individuals failed to realize that God never made anything the same. Even rainbows have different lengths. If they loved their children, we loved our children too. If they want proper and good education for their children, we want it too. If they couldn’t bear to see their children suffering when they were sick, we couldn‚t bear to see our children suffering their whole life too.
I wished I can be his eternal bodyguard….
What a touching story! but, also, so sad that no matter where one may live, society doesn’t see our children having more similarities than differences…and not accepting those differences.
I have no words. She so eloquently expresses what we parents of special needs kids feel. Thank you for sharing it with the rest of the world.
Wow, I had to grab the tissues on this entry. So touching, so heartfelt and so real. Just remember that Autism is not a processing error. It’s a different operating system. Keep your head up darling.
In late January, I was referred by a mutual friend to join a support group for Singaporean Muslim parents dealing with ASD, which Siti started in 2011, on Facebook. It was close to 2 years since my children’s diagnoses and I finally found a group to share my joys & struggles with. Amongst the joys was the reading of this absolutely wonderful Shut Up About Your Perfect Kid book last year and I was just so glad to find a group of people who would really benefit from reading it. I did recommend the book to my FB friends last year, but I’m not sure how many actually rushed out to grab it from the stores. But with the support group, I knew most (if they had the chance) would put it in their Priority Reads list. 🙂
And I’m so proud of Siti, for submitting her story here. 🙂 Alhamdulillah, Keep up the good work, babe!