Sometimes things aren’t as they seem….

My 15yo son talks in a low monotone with a touch of sarcasm. He isn’t bored. He just doesn’t do emphasis unless he really needs to. If he wants to get his point across, he’ll raise his voice rather than add other tones.

He has never liked change. Somewhere in routine, he exists in his own little world and functions at times, like any other teenage boy. As he’s grown he’s become a little more accepting of little adjustments to his life but essentially prefers to know what is happening each day at the same time. Any little detail change – like taking a different route to a destination is usually met with constant questions of why and how. He argues if he feels you have no excuse for doing it differently.

Touch is not one of his favourite senses. An affectionate hug is foreign to him. If he is touching me, it’s often an exaggerated nudge. To him, this is as close as he gets to saying he loves me. The fact he often knocks me for six when doing so, is neither here nor there. He shys from others’ wishing to reach out to him.

His quirks include not eating at school or in public unless he is extremely hungry. Therefore, he does not take lunch to school and often only grabs a banana or apple on his way out the door. By the time he gets home of an afternoon, he will often eat everything he can find and dinner and dessert to boot.

He dislikes bathing and has one pair of casual shorts he wears constantly when not in school uniform. After nearly 10 years of uniforms, he is staid in what is acceptable… his shoes must be pure black with no other colours. His socks, white and ankle height only. Somehow he has his own sense of what is right and wrong within the school guidelines.

He is gifted and loves music. Although he sings in that low monotone voice (somehow more evident now his voice has broken ). His obssessions include computers, games, reading voraciously, maths and logic and using wit and a dry sense of humour with any communication.

My 15 yo has Aspergers Syndrome, a form of Autism Spectrum Disorder. He seems to most who meet him casually, an everyday teenage lad. And he is. I have hope he will one day be able to live independently. Hold down a job. Get a licence and own a car. None of these are impossible, they will just take time and effort to teach him.

Maybe he’ll even fall in love and settle down. That’s my wish for him anyway.

For now, he’s often challenging. Seemingly ignorant of others’ needs at times and often self absorbed. But he is learning slowly how to deal with his lack of understanding of social issues and how to interact with others. His siblings only know him this way. Perhaps my 5 yo has a similar affliction. Time will tell.

It’s not all bad though. His Aspergers has saved his life in my eyes.

When he was diagnosed with Adreno cortical carcinoma just before his 7th birthday, he could have given up. After numerous surgeries and extensive therapies for over 4 years as well as the knowledge his cancer was “incurable” and his passing “inevitable”, you couldn’t blame him if he’d given up the will to live.

Somehow he didn’t. It was like the cancer wasn’t even part of him… it was just another “hurdle” to get around. Each time the morphine drip was disconnected he was up and about the hospital ward searching endlessly for the computer games and interacting with a screen just as if he’d been at home. At no time did he dwell on “why” or “how” or even “when”. He lived each day as if it was the day before.

Would I change him if I could?

No. He frustrates me no end some days. He antagonises his brothers and sister just because he can at times. But he cooks them dinner, makes them “ice cream” in his own special way and sometimes even does things they ask him to… when they least expect it.

Life is never dull with him around. Which is a good thing really…. since I have a strong gut feeling he’ll be here for quite a while to come!

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~ by C J on November 14, 2010.

4 Responses to “Sometimes things aren’t as they seem….”

  1. 😀 Lovely blog with a touch of nostalgia…

  2. Loving this post C! ❤

  3. beautiful post! So heartfelt and warm.

  4. He sounds sooo much like my little brother, who is 14. J is also a huge Dr Who fan too!

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