Archive for July, 2010

Haziq’s back from OBS

Haziq’s home later this evening. He’s probably going to be very tired and hungry. I made him one of his favorite food, spicy mince meat and bell peppers wrapped in tortillas topped with cheese. Not typically local at all but Haziq has a preference for Tex-Mex food. For many years of his childhood he had kept to a rigid diet and had been good-tempered and disciplined about it so now I indulge him. In today’s blog I thought of relating Haziq’s experience with epilepsy. His first attack was when he was already 17. Since he developed epilepsy at this late stage he has little chance of outgrowing it. He will probably be on meds for the rest of his life. His last two seizures was while on holiday. Perhaps the stress of being in unfamiliar territory. Once was while walking along Railey beach in Krabi, Thailand. We were walking behind his brother and sister towards the steep limestone cliffs all geared up in their safety harness ready for rock-climbing. He looked up at the cliffs and said “It’s so high”. His voice trembled a little but I didn’t take notice. Next thing Haziq was rolling head over heels in a peculiar slow motion way down the sloping beach. I ran to him and soon had the locals rushing to my side. True to the generous nature of the Thais, they organized a way to get him back to the hotel. You see, this side of Krabi was a little, unspoiled community without any vehicles or roads. They had to get a tractor to transport him – the very same tractor that ploughs into the sea to meet boats halfway and transfer people and baggage to shore. He got to the hotel safely but disoriented and nauseous. He threw up twice and then sank into a deep sleep. Aside from a few bruises he was okay by nightfall. What a way to start a holiday.

The next holiday in Bandung, Indonesia he was, thankfully seated on a bench waiting for our breakfast orders of fresh yoghurt and toast at what was once a cow farm converted to a restaurant. With a short cry of pain he collapsed but we managed to catch him before he hit the ground. The seizure was much more severe though.

His doctor had no choice but to increase the dosage. Sadly the extra dosage of drugs will have an effect on his concentration level and the process of learning will be even more difficult than it already is. Just when you think things can’t get any worse, it does. Life with an autistic child has its share of joys and pain. Life with an epileptic, autistic young adult is going to require huge doses of Faith.

God give me Strength.

Mum’s handiwork

While Haziq is away I will take the opportunity to show some of my work with shells that Haziq picked up while we were on holiday. The shells are all in its natural state, even the color, except for a coat of varnish to make it more durable and to add some shine. Everything is 100% handmade. I used non-tarnish artistic wire and a few beads and a dose of creativity. It even came with ‘ready’ holes which I made use of fully. There are more brooches made from shells but I felt 3 photos would suffice.  All have been sold and photography is by Haziq’s 14-year old sister, Nadhrah :>

We found these simple yet beautiful shells right on our own shores. We have been to Sanibel Island in Florida where it’s reputed to be the 2nd best beach in the world for shell hunting. The beautiful beach itself was of a powdery, white sand and we did find exotic shells but every single one was broken. What a shame. The trip was not in vain though cos we were able to watch 2 dolphins frolicking within metres of the beach for some time. That was unforgettable. Haziq loved it.

Handmade 100%

Haziq's teacher bought this for a friend in Australia

Hi-ho hi-ho its Outward Bound School (OBS) we go

This morning I leave for Lumut, near Pangkor to participate in the Outward Bound School or OBS program.

Did you know it was the first center established outside the United Kingdom, in 1955?. I think this is my 4th trip. Or is it my 5th? I perform better each time cause I know what to expect. Its tough but nowhere as tough as the climb up Mount Kinabalu, Sabah. Yup that’s right, the highest mountain in South-east Asia. We special kids did that climb. Believe it. I’ll tell you all about it next time. Last night Mum checked every single thing I packed. I did well. The most important thing was my meds. I have to take 5 tablets a day. It keeps in check epilepsy attacks especially when I am away from home. Anxiety from unfamiliar surroundings seems to bring it on. Huh tell me about it. I had seizures during two holidays. Once on a beach in Krabi, Thailand and another on a cow farm in Bandung, Indonesia. That itself requires a post of its own. I just forgot a sarong for prayer time, a few toiletries and shorts for shower time. Yeay good job. The first time I was in OBS I created an uproar bathing in the nude. Go figure. Went out to get me flip-flops. I chose one with vertical blue stripes. Mum said I have good taste. Used to be a time when Mum had to chose every single thing for me cos I just wasn’t aware of color or shape. Now I can even ‘feel’ quality. Sensory-wise that’s a huge step.

We got to my old school nice and early. Mum reads me the itinerary. Sounds good, especially the BBQ at the end of the program. Hahaha. The teacher- in-charge tells parents not to worry if the weather gets bad on the night that we are supposed to row over to a little island and camp there. If that happens they will abandon the plan. Mum gives me pocket-money and she leaves me on the bus with the others. She knows I’ll be alright. After all I am the oldest in the group. Hope to be able to put up some photos of my activities there in the next blog. Be back on Friday evening, July 30th. Till then have a look at the photos below. That’s some of the outdoorsy stuff I will be doing. Looks like fun right? Bye now.





Our Kayak trip



So this is brother’s new, far away home…

We piled the car with snacks, drinks, clothes hangers, an electric jug and whatnot and we were on our way to see my brother at KYUEM. We met him at the Great Hall where he was busy directing a show for his seniors. I don’t understand but it must be important from the way he talks about it. He likes doing these kind of creative things. He tried to teach me to dance a couple of times but always ends up laughing more than anything else. I didn’t learn a thing. It doesn’t matter cos all I know is I’m happy when I dance my kind of dance. Never mind if everyone says I look like Mr. Bean. I like Mr. Bean. A lot.

Brother’s room was small but cozy. I helped make the bed with that new quilt Mum bought. I kept very quiet. Too many things are new to me and I need time to think on it. We didn’t stay long. Next weekend we can bring him home. On the way home Mum and Dad talks to my sister about her studying there too someday. I stiffen. Mum glances at me. Does she see the question pop up in my head? WHY does my brother and sister have to leave me?.

Music and sweet memories

I’m listening to the Disneyland music Mum downloaded yesterday. It’s the best. I especially like the Main Street Parade music. I imagine myself standing in the crowd watching the fairytale float procession with all my favorite characters waving at me. In between the floats are dancers in colorful fantasy clothing. In a moment I too am dancing, jumping and singing. I crash into a chair. Mum asks me to sit and calm down before I hurt myself.

God, I miss living in Florida. The two short years there were the best years of my life. Dad bought Florida residents’ annual tickets to Disney World. It gave us unlimited entry to any Disney park anytime of the year, almost. Being 3.5 hours away from Orlando meant we could even go for the weekend, which we often did. Mum would find great hotel deals on the internet. One hotel had its own mini water theme park, another had train rides to the room and another had bunk beds and a Nintendo. The best were resorts with heated pools, a kitchen and plenty of cycling paths for Dad and brother. I tried to learn to cycle but balancing is a difficult task for me. It took me some time just to co-ordinate my hands and eyes to catch a ball. I did play hoops eventually but that’s because it didn’t involve much pain… unlike falling off a bike. I guess you know by now I don’t handle pain well. Still don’t understand this concept of “macho”.

Back to Orlando – when I was not out theme park hopping, I would be in the pool. We took leisurely walks in the parks, fed the ducks and played by the fountains while my brother got on his roller blades and little sister pushed her scooter. I’d go to bed exhausted and incredibly happy.

Quiet today, better tomorrow

It’s a quiet day. I don’t feel like saying much. My eye contact is at a bare minimum, just enough to scrape by Mum’s radar. She can sense it when I’m not altogether there just by checking eye contact. We autistic folks know a neat trick ….how to look at a person and yet look right through the person so that we can continue chasing our own thoughts racing at a crazy speed in our mysterious minds. Yes you guessed it. I used to do it all the time when I was little but Mum wised up. Now she can sense it just by observing slight body movements even at the corner of her eye. It gives me the creeps cause next thing I know I’m almost jumping out of my skin in reaction to my name being called out LOUD.

Tomorrow will be a better day. Mum said I can listen to the music she just completed downloading for me – The Music of Disneyland, Walt Disney World and Epcot Center. It brings me wonderful memories of my time there. I can name every ride, every attraction and every place on the map. Its true. I forget relatives’ names but I know everything Disney at my fingertips. Mum calls it selective memory. I constantly dream of visiting Disney World again. They don’t call it the Happiest Place on Earth for nothing you know.

I miss Irsyad

There I said it!. Out of the blue. Mum looks at me with surprise. This is a rare moment since I do not show much emotion or express myself much. Mum says brother will be home for a short visit next weekend. Not to worry, he’s doing fine and he has a nice room all to himself. I do not understand. Where? I ask. In campus. She forgets to explain to me what “campus” means. She says we can go visit one day. I guess it’s easier to show me then to tell me. It’s always been that way.

So I prepare to go to bed, wishing goodnight to everyone in the house like I do every night without fail. Except that tonight and many more nights I will have one less person to say goodnight to. It feels uncomfortably…… incomplete.