1amirasyraf's Blog

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Daily with Amir…

on 11/02/2010

Been a while haven’t post anything…just couldn’t find the “right” words to express how I feel…

Full time with Amir IS stressful. Compare it with your boss who doesn’t understand you/your team or keep “nagging” at you about your work; handling Amir IS a handful and stressful!!…The sameness of routine he wants/have to follow sometimes can drive a person off the wall!! When he doesn’t want to follow your instructions and when he just went berserk with his tantrums (imagine this: he screams, cries aloud, hit his head on the floor or with his hand, and if he’s in the car he will hit the dashboard) These symptoms goes on everyday!!! How do I handle it?? I don’t…I just don’t know what to do…If Amir does not get what he wants or unsatisfied, he will beat up his brother, Asyraf; sometimes he will pulled Asyraf’s hair and hold on to it very tightly…There are times I just shouted and cried for Amir to let go of Asyraf…What happen to Asyraf?? Well, he became timid, very scared of Amir. Now, Asyraf has strategies (which I have developed during my stay at home), whenever Amir is unsatisfied or angry, either Asyraf runs to me or he locks himself in my room…At times door banging will be heard in the house whenever I felt very tired or helpless not knowing how to overcome Amir’s tantrum. Things in the house will be thrown about, broken…just to satisfy Amir’s unsatisfactory…

When I was at work, people surrounding me thought that I am ok…everything was fine…but actually things were worsen everyday…sending Amir to school with tantrum, rushing to work, was unable to come in early or on time…during the hours I’m in the office I’ve left Amir with my ailing father…what kind of a child am I…I’m really sorry, Ayah…May Allah repay all the love you’ve given to Amir. Now I realize since I’ve taken off from work; all the “hassle” and tantrums that Amir has been giving Ayah for all these years…I am sorry, Ayah…I will step up and take care of Amir to what strength and patience that I have…

Just found out that Amir isn’t progressing in his studies nor in his therapies in school. I “left” Amir for 3 years – stranded in his “world”, Amir could not control nor express what he feels – for my career!! Am I a good mother?? What have I done to my special need child?? How do I overcome this??

Taking leave from work has bond us spiritually, maybe Amir was hoping for these moments, it’s just that he can’t express it…During a good day with Amir, we will have conversation (Amir’s style)…I do miss having normal conversations with people but having a conversation with Amir such as Mama, cook chicken (means: Mama, I’m hungry. I want to eat fried chicken) will be a triumph for me. Another good day with Amir, will be when Amir asked me to sing along with him on any songs he plays on the stereo. He usually will touch the cheek indication that I should sing along…and when I sing…the smile he gives me does make my eyes watery…Amir enjoys listening to my voice (that’s another triumph I’ve received) unlike Asyraf, he always dislike whenever I sing (suara mama tak sedap).

All my dreams or goals are cater for the well being of Amir (maybe letting go of my career, time will tell). Wherever I go nowadays I will have my 2 boys with me…groceries shopping, playgrounds, etc. I have also take up lessons on learning difficulties in order to learn more about Amir’s condition. I am simply hooked on Amir.

A friend has brought up a thought which had touched my heart and every time I think of it my eyes will become watery. “After all the intervention programs we give to our special needs child, what is the guarantee that our child will be better and make the right decision in their life? Such as dating, getting married, to get a job, work place, raising their own family?? The answer was given: all of it is in God’s hand, they will travel in life, hopefully they will make the “right” choice in life…” Tears just rolled down as I realized that I could not protect Amir forever…even if I “prepared” him for the journey of his life, I still can’t be sure what will happen to him…my heart just sank…is that what all special needs child’s mothers’ feel everyday? Remember the “good” day with your special needs child, treasure it as well as you can…

So with this note, I hope whoever thinks that I have a jolly good time resting at home (escaping stress at work); will at least bear in their mind of these “situations” I just mentioned!!! Having a special needs child like Amir is like going to war…you will never know what will happen…you think you’ve followed all the routine perfectly, everything will be smooth and beautiful…but, just a tiny routine that you’ve missed will create a catastrophic moment for the day. Can’t imagine?? Imagine this…you are in a mine field, one wrong step…kabooom…you’re gone in pieces…that’s my life today!!!…

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