Archive for the ‘Don’t mess with my routine’ Category

If it ain’t baroque, don’t fix it

Haziq is taking a break so today I am writing in the capacity of Haziq’s mother. I was asked to share my experience on bedtime discipline.

The most common sense thing is no sugar intake hours before bedtime. Haziq was put on a sugar-free, no preservatives, no artificial coloring/flavoring, diet since he was diagnosed at 2.5 years old so this was no problem. No problem meant he couldn’t get access to sugary stuff at home but we still had big problems keeping him away from sugar when out in public. Allow only short afternoon naps. Make preparation for bedtime a regular series of events e.g a bath, change into pyjamas, make a big show of looking at the clock and announcing the time (never mind if he didn’t know how to tell time). Before that, ensure room is cool and blinds drawn. For us, saying goodnight at the bottom of the stairs was a happy, kissing, waving event….. but no last-minute tickling games. The operative word here is CALMNESS.

He gets into the crib and is rewarded with his favorite night toy. A toy which is made available only during bedtime. Then comes the most important part. Put on classical, baroque music. The same CD every single night until he recognizes his ‘sleep music’. I may have lost some readers here. What’s baroque did you say? Baroque music expresses order yet it is always tuneful. In my CD the first song was Vivaldi’s  The Four Seasons which is actually four concertos, combined into a concert. This same CD served its purpose for all my 3 children so much so that till today I am unable to listen to this music without falling asleep.

I got the above tip from Haziq’s progressive doctor, Dr. Kadir. Please remember that this was the pre-Internet era. We were starving for information about this thing called autism. When Haziq was first diagnosed I was directed to The Lutheran Church’s library for reading material. They were generous enough to allow a Muslim woman become a member. It was from their 3 library books that I devoured all knowledge of autism. If I ever run for politics I have to ensure my membership to the church is never revealed. LOL.

Lastly, say goodnight, put the baby monitor on and leave the room. Yes I said leave the room (we played games with the baby monitor so he knows he can be heard). If he gets up at night just give water which quickly bores him and gets him back to sleep. Certainly there were nights when all this didn’t work but they were infrequent. Even normal kids give parents a hard time so this part of the training was very significant in terms of time, effort and creativity. However, once regulated he went to sleep like clockwork and I got my much-needed rest. Well worth it.

Sorry about such a long post but I hope to be of help. Lastly, an old orchestra joke, “If it ain’t baroque, don’t fix it.”

I don’t handle sickness well

Does anybody? I moan and I groan and I sigh every chance I get. It doesn’t help me get better but I tend to share my misery with all around me. Funny thing, when I’m happy and entertaining my own chaotic thoughts (many come in the form of cartoons but I don’t expect you to understand that) I really rather be alone. I like my kind, gentle doctor but hate that wooden thing he puts on my tongue. I gag easily.

I’m back to health now but Mum adds one more to-do item to my daily routine. She wants me to drink 2 ounces of VeMMA juice, a powerful anti-oxidant to help me stay healthy. I am anxious. She says its juice from the one of my favorite fruits, manggis (mangosteen). She shows me the picture on the bottle. And so it is.

My daily nutrition

Now understand this folks. I work hard at fine tuning my daily life so that it runs like clockwork. Change is stressful for me. It means one more task to manage and remember. Lucky for me VeMMA tastes good. I gag easily. Did I mention it before?

What’s the fuss about?

I see the excitement. I see the shopping bags crammed with new stuff. I don’t see what the fuss is about. Mum explains that my brother is leaving for college. They tell me brother will not be with us for many days at a time. Where does he sleep? I don’t think I like this at all. He belongs here at home. Like it has been for the past 18 years. I mean, I went to college and I came home everyday. I know what you’re thinking…. me, an autistic guy in college?? Yeah right! I did go to college… kidding.

I was selected to attend a culinary and kitchen basics course for 4 months under a corporate social responsibility (CSR) program that offers opportunities for special people like me to learn new skills. I even wore proper chef attire minus the tall hat. However I have a deep unexplainable fear of fire and heat. On top of that I can only manage two instructions at any one time. You cannot imagine how difficult this was for someone like me.

So why did I agree? Simply because I need new life experiences, need to keep moving and learning to make sure I stay on the edge and not get sucked into the Black Hole of autism.

Mum was nervous that lack of awareness about my disability may lead to some bad incident. Unfortunately she was right. Don’t get me wrong. I was never bullied. The other students were cool about having someone like me around. They probably thought of me as ‘the weird one’. I don’t blame them cause I do weird stuff like word repetition and smiling to myself. Sadly, what happened was a female lecturer accused me of sexual harassment. I have no freaking idea what that means!. You see, even though my body reached puberty, my maturity did not progress beyond the mentality of a 12-year old with a sexual awareness of a 7-year old. On a particularly stressful day in class I had made an honest mistake of touching her arm to get her attention and said “need help”. She chose to translate it as a threat. Mum said many things about that ‘ignorant, arrogant woman‘ but under that anger was a deep sadness. She knew it was just another peek of what difficulties lie ahead of me. I’m still trying to grasp this puzzling concept of personal space. Mum tried to “un-teach” me the physical act of asking for help but its hard to undo what was taught to me by my American speech therapist and Finnish occupational therapist. Sue and Mrs F, how much better this world would be with compassionate educators like yourselves. Though I have not seen you both since I was 6 years old I will be forever grateful for your love and kindness.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around”- Leo Buscaglia