Friday, June 3, 2011

My Hands and Her Hopes

Last week, I spent some time after work doing some revisions with my First Little Angel, Faris. He was into his second day of his kindy’s Mid Term Exam. I gave him a call the next day asking how was the exam (such a big word for such a little boy) and he was, with considerable amount of confidence in his voice, telling me that he managed to answer all questions (as I taught him to read his mind out loud whenever he’s confused) and he thought he did good.

Faris does not enjoy doing homework. He needs a pair of watchful eyes hovering over him to keep his focus on track. It is not that he is not good but after a considerable time being harshly reprimanded by his Mama while doing homework (for those imperfect, childish handwriting and dyslexic tendencies), Faris finds homework time emotionally confusing.

I am glad that my parents and I moved to a place closer to my sister (despite that I have lesser Ringgit in my purse for maintaining 2 houses). Not only that my parents could see their grandchildren often, I could spare my sister’s precious time for a good, short break or just concentrate on my Second Little Angel, Hariz. And Faris has his Mak Long who would allow him to be just a normal boy (Mak and my sister often protest my kind of leeway with Faris, messing up the kitchen while helping me cooking or baking, turning my room upside down with our art projects or eating too much chocolates before dinner).

My sister, like other parents to children with severe autism spectrum, is constantly on the verge of breaking down. Taking care of Hariz is physically tiring as Hariz needs to undergo various sensory and physical exercises. Emotionally, it is even more demanding as my sister constantly battles to decipher what is in Hariz’s mind and most importantly, what lies in the future for Hariz. Being a picky eater, Hariz’s diet changes every day, depending on his moods. One day, he may eat sufficiently to compensate for his high energy activities (surprising he seems to be a self-taught swimmer). On another day, he eats so little, he would wake up from his sleeping crying, signaling his hunger. And when Hariz cries, everyone has to bear with his incessant crying. I was trying to help Fariz, his brother, to concentrate on those numbers last night but even I found it difficult with Hariz crying non-stop, despite being consoled by my sister. As much as Hariz needs the help, my First Little Angel too deserves his. There are times when Faris would suffer from my sister’s frustration and exhaustion from taking care of Hariz. Despite me advising my sister to just walk away when she’s tired, Faris would get a beat or two when she had enough of so many things in her mind. That is something I cannot tolerate but who am I to criticize when I am not wearing her shoes?

Human beings are created by the Almighty strong in body, mind and soul to carry out their purpose in life but with constant tribulations, it is so easy to feel defeated, dejected and dead. What gives us all strength to soldier on is wisdom.

Alexandre Dumas Père once said that, “All human wisdom is summed up in two words - wait and hope”. In my sister’s case, for all these years going to the hospitals and many autism centres, she sees no light at the end of Hariz’s tunnel.

It is indeed disheartening to realise that those experts in the government hospitals are clueless about autism and not helpful at all. After 2 years of counseling and therapies at the government hospitals, Hariz is now being categorized as having Global Development Disorder by an expert in a private establishment, which charges thousands of Ringgit a month for a complete set of treatment and this means Hariz suffers from severe autism. Upon revelation of this bad news, my sister was given a ‘lecture’ for delay in getting Hariz to be properly diagnosed. For a woman who had suffered 6 miscarriages in a span of 4 years – such lecture was a major blow, questioning her credibility as a mother.

For records, my sister has spent a considerable sum of money for Hariz treatments in so many places. She is not asking for free treatments but she, like other parents in her situation, hopes that our government hospitals employ competent experts and strengthen their services by engaging more college students and volunteers to learn more about autism and its treatments. Although media has reported millions of government funds have been allocated for children like Hariz, the said funds are yet to trickle down to where they are needed most NOW. The existing facilities we have to help these children are scarcely located, when they should be localised to accomodate the rising demands of handling cases like Hariz and other prevalent learning disabilities.

There is no cure to Autism but by having these in place, I am sure, parents like my sister would sigh huge relief for children like Hariz, their journey to normal life, like us, is a long, winding one. There is no ending but there is hope for them to hang on to.

Yes, I started this post with my Faris. I believe, with Hariz's need is well taken care of, so does Faris because I want him to grow up in a conducive environment. Like many others out there, an illness would not only affect a person, it affects the whole fibre of the family, the society and eventually the nation. Let's make a point to lend a hand without them asking.

With the social system of a nation intact, the prospect of its people to grow and prosper is immense and unstoppable.

A strong nation, like a strong person, can afford to be gentle, firm, thoughtful, and restrained. It can afford to extend a helping hand to others. It's a weak nation, like a weak person, that must behave with bluster and boasting and rashness and other signs of insecurity” ~ Jimmy Carter

No comments: