The Boy With a Thorn In His Side

I thought I’d share a bit of the other side of Charlie in this post.  Yes he is beautiful, gentle, kind, intelligent but he has this other side to him which is a heady, potent mix of Aspergers Syndrome, his personality and just a boy who is sick of his harsh cancer treatment.  So just like the Sex Pistols, Charlie has been running riot at various times during his treatment.  He could never have been a poster boy for his fight against cancer.  There are no cute pictures of him holding his thumbs up to show he’s fighting through with a smile.  On the contrary he is growling and snarling his way through his treatment. He’d have made a terrific punk.

On any given day he can suddenly turn into a tazmanian devil when any soul be it consultant, doctor, nurse or play therapist enter the room. He has no concept of authority so doesn’t discriminate. God forbid you have a meek or mild disposition.  Charlie can smell it.  He will destroy!!  His eyes, anticipate everyone’s movements in the room.  As soon as hands come close to him his fingers become guns, his fists weapons of war, his mouth open in battle cry.  He has even been known to bare his teeth at times.  Then come the insults.  He has verbally catherterised, set on fire, bombed, shot and turned into babies almost everyone who has tried to have a conversation with him.  Just tonight he has said “I hate nurses” with a haughty venom to the nurse who came to take his blood pressure.  He is comparable to Stewie from Family Guy.  Basically wreaking revenge on everyone and with good reason I guess. He has hollered, slapped, punched, kicked and gouged his way through the wards leaving a trail of bewildered, shocked and amused beings in his wake.  Sometimes I’m able to contain these little outbursts but even I know when he’s too far gone and just  let him go for it. I can virtually hear the soundtrack playing when he’s in full flight “I am an Anti-Christ!”  This boy has some engergy.  Its awesome to watch.  Like a wild, untameable mustang simply misplaced and misunderstood fighting against being controlled.   Wonderfully spirited and I adore him for it.  I’m over being embarrassed and while some may think what a terrible mother I am for thinking like this let me tell you I have tried EVERYTHING to get him to conform.  I have read book after book on methods, therapies, drugs and diets and have tried a great deal of them.  Occassionally we’ve seen some progress.  I’ve had people say to me “Can he talk to you”and I reply “Yes I’ve had some of the best conversations of my life with him” or “Its a shame he doesn’t know whats going on” and “I don’t know how you cope” and “He needs a good slap”.  I roll my eyes and surpress the urge not to shout.  Aspergers is a communication disorder, not a mental retardation.  He is smarter than most and the cruel irony is that he can see people think he is different. He simply treads a higher plane than we do. In other civilisations this is accepted and they hold as an important a place in their tribe as any other.  In our society we see it as a problem, struggle to comprehend it so sweep it under the the ever growing ‘mental health’ carpet. How sick is our society?  How alone must that make him feel?  So I decided long ago after all the years in dealing with this that I would never have a kid of mine feeling alone and set apart in the world.  So if you see me pretending to fire my fingers like guns or talking to seagulls its because I’m giving my boy a sense of security and togetherness.  I’d rather walk in his world.  He is mine and I am his and I’ll never let go of his hand.

If you ever meet Charlie you would do well to just to say hi and sit and be quiet a while with him.  He will invite you into his conversation and the whole world will open up quite different to how you thought it looked.  He looked at a horse on its own in a field once and said “The horse is having some quiet time”.  When he is at peace Charlie’s eyes have that same quality that a horse’s eyes have.  An ageless knowing, a gentleness about the beast. I wouldn’t have him any other way.  In a week where everyone is Standing Up To Cancer, we Stand Up For Autism aswell.

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