Thursday, August 23, 2012

Mine... No Mine! No - MINE!

Sometimes it feels like this journey on the autism rollercoaster is like a pissing contest. You know, whose story is the worst, or who does it right, or what therapy works, or what boxes does your child fit into?

Copyright Madmother

And I am just as guilty as the rest of them. It is hard to remember at times that everyone's experiences and more importantly, everyone's children are unique. Individual. What issues they or you face, whilst similar to ours, will not be identical. What quirks their or your child have may sound the same, but will not be.

At this time in Boy 1's and our lives we are gifted with some wonderful advantages: clarity and hindsight, but this does not give us the right to dictate to others. Our path, our strategies, our philosophy, is just that. OURS. And whilst it may have worked for our son, it does not mean it will work for anyone/everyone else's.

Experience is a wonderful thing, and it is a joy for us to be able to mentor and support other parents who follow behind, but we also need to allow them to choose what works for them. They will blaze their own trails.

I had a lovely morning with some other parents this morning, and whilst I admit, I find it hard to relate nowadays (and I am sure the reverse is same for them - they cannot see where we are from the point they are at), it was really nice to discuss our differing ideas.

I have a hell of a lot of knowledge stored in this befuddled brain, and am always very happy to share and offer advice (okay - I do talk a lot, lol) and the solutions that worked for us, but from now on I am going to add a disclaimer...

WARNING: Whilst the following produced the stated result in our son, feel free to disregard if it ain't for you.


Saturday, August 18, 2012

Pappa Gio and The Pizza Capers... mUSE wARS rEVIVAL eDITION - # 2

Part I: The present.
Her face pressed hard against the warm window of the pizza place as the flow of saliva flooded her mouth with a gush. Sal glanced around, sure everyone passing could see the river of drool as it swept past her glands. A gloved hand quickly wiped the imagined overflow from her chin, but as she glanced down to the pristine white there was no trace of moisture. Not a drop nor a mark.

Pizza was her weakness, the one food she classed as pure comfort. Sal felt it linked back to her Grandpa Sol and their favourite story, Gio's Pizza. It was tradition in the Jones household to read it every night the grandchildren came to stay. As one of fourteen, and the only one of the grandchildren to live with Grandpa Sol and Grandma Jo, it meant Sal heard the story at least twice a week for many of her formative years. Grandpa Sol even looked like Gio Fabrizza.

One of the many, hers was merely a face in the crowd of children of their children. But whilst the story was shared amongst the fourteen of them, the recipe at the back and the special nights cooking pizza in the old timber-burning oven were her's and Sol's alone. A treat only they shared, a special bond. Private. Those were the nights Grandma Jo was at her prayer meeting, and if she ever wondered about the lingering odour of oregano, cheese and garlic it was never mentioned. Not once in the eight years Sal lived in their home.

Pizza remained her solace today but her widening waistline and shrinking wallet meant it was a rare indulgence. Something to be enjoyed only on the scarce special occasion when a celebration was warranted. Sal hadn't had pizza in over a year.

She allowed herself one last lingering look before turning away, forcing the urges back, dampening the craving down. Fighting her need. She walked away, a solitary, slouched figure lost in memories. 

Part II: The past.
She crammed the last glorious piece of pizza into her already overfilled mouth. The smell saturated her senses, the taste provoked orgasms of pleasure all through her body, but all the while the protesting crackle of flames reminded her she needed to leave before it was too late. She slowly licked the grease from her fingers.

Sal allowed herself one last lingering glance around what was her home. The place she had visited as a child with her mother, the house she was welcomed into after her mother's suicide, the rooms that had witnessed the pizza nights, her special nights with Grandpa Sol.

"His pizzas are fantastic
There's none that can compare
If you have the luck to try one
You'll never want to share!"

Sal was sick of sharing. So tired of the others crowding her, coming and going as they pleased, only staying for a little, enough to disrupt her life, then heading on back to their mothers and fathers and nice, cosy, safe lives. 

Her special nights with Sol had lost their lustre. Appeal had shrunk as she hit her teenage years and puberty beckoned. Needs changed.

Sal wiped her greasy fingers on Grandma Jo's apron before picking up her backpack. It was sad to think all her worldly goods fitted snugly into the one bag, fourteen years of life crammed into the canvas covers.

The flames began to crackle louder as if protesting her departure, alone in their complaint. Not another sound nor argument heard.

The roar of the fire prompted her to say her farewells. "Night Grandpa Sol, night Grandma Jo."

No more special pizza nights with Grandpa Sol, this was the last.    
Sal stepped over the bloody bodies of her grandparents, glancing down at Grandpa Sol's favourite pizza knife still embedded in his back.  No more was she his special girl, no more would he lovingly caress her as he had whilst they waited for the pizza to cook. Never again would he murmer she was his sexy little secret girl.     She hadn't heard those words for a while now.  
She had sensed Grandpa Sol's revulsion when he looked at her naked, her budding breasts, her developing curves. He was going to leave her even though he had promised not to. He had promised many things over the years, none he had delivered.

As she pulled the door shut the sounds of burning quietened. Sal walked away without a backward glance, not even as the house erupted in flaming splendour.

Friday, August 17, 2012

The What If's... FYBF Our Story

Firstly, a disclaimer. I am not a psychologist, psychiatrist, paediatrician, doctor, speech therapist, occupational therapist or any other type of specialist. What I AM is a mother of a son on the autism spectrum, which in my opinion, makes me a little of all of the above.

My oldest son is fourteen years of age. He stands five foot eleven inches, tall, slender, and to be totally unbiased, drop dead gorgeous. He is in his first year of high school (Grade 8 here in The Queen's own land). His smile could break a million hearts, his laughter warm a million more.

My son. My beautiful son. My wonderful amazing straight A, acing school, report card written in such glowing terms you need sunglasses to read it, son.

My son who has Asperger Syndrome.

He was three when we began this journey. Three. He was five turning six when we began to formalise it. Back ten years ago there was no financial aide, little support and not much information. Early intervention was a mix of public and private chaos. We were lucky, we muddled our way onto the very path that is recommended for all littlies on the spectrum today. Speech therapy, physiotherapy, occupational therapy, psychologist, social skills group... somehow in  the confusion we got it right.

Which leads me to the point of today's post.

Intellectual impairment and autism.

My son was assessed using all the modern diagnostic tools, I could use all the lovely letters here but they may not mean much to a lot of you. Things such as CARS, WISPII, DSM IV.

But the actual results do not stick in my mind, what is frozen there was the psychologist's words.

Moderate Intellectual Impairment.

My son. My baby. My beautiful boy. I cried that day. And probably the day after too. It is all a little foggy now.

What I didn't know then is that the IQ testing part is notoriously inaccurate in results when testing CHILDREN ON THE AUTISM SPECTRUM.

What I didn't know was that these amazing kids do not test well at all, and their ability is often recorded far lower than it actually is.

What I did realise within 48 hours was whilst testing was well and good, he was still MY son, the exact same child as before diagnosis, before testing, before this specialist's words.

My son.

Whom nobody knew as well as I, his mother did. And in my heart there was no doubt that he DID NOT HAVE AN II.

Over the next few years many people, teachers, specialists, parents treated me with sympathy as they decided I was delusional or in denial. I even had one senior special needs educator (they brought in the BIG guns to deal with me) tell me I was "unduly scaring my child with my inability to recognise his shortcomings"... yeah, that one I can quote word for word nearly a decade later. 

Poor, poor woman. Silly, delusional Madmother.

The crazy woman.

The mother who knew, loved and accepted her child whilst still believing in him. The mother who fought tooth and nail for his rights, for who she KNEW in her heart, he was, for the man she knew he could be.

For the young man he is today.

I guess my point is this. For those of you on the start of this journey, believe in yourself. Trust your instincts as a parent, have the guts to stick to what YOU know your child to be no matter what the so-called experts say.
Boy 1 Grade 7 Graduation 2011

It is worth it. It is beyond worth it, it is incredible, amazing, heart-filling, bursting with pride, jaw-droppingly WOW!

Wednesday, August 15, 2012

When Friendship Dies

I had a friend. A really close friend. Someone I trusted, spoke to daily, supported as she supported me. Then the THING happened. You know, the THING that seems to be oh so common? The chill. You know something has changed but have no idea why? You start to second guess every recent discussion, every chat, every joke, every little thing, searching, trying to work out what YOU did wrong.

And eventually you realise. It is not YOU, it is her, and no matter how much that friendship mattered at the time, you have to walk away and let it go.

As I always tell my children, you cannot control the actions of another, merely your own actions and reactions.

I was over at Maxabella's yesterday, and read her post on the death of a friendship. Then I read the comments and realised just how common this sort of thing is between women. It helps to know others go through the same thing, it helps not to be alone.

I wonder if they ended up in such a toxic situation as mine became, the constant lies, trouble-making, victim mentality attacks. The stalking (for it can be called no other), the isolation as I refused to enter into a he said/she said battle with mutual friends. The trouble it caused for my children, especially my youngest, when her poison spread to our school. The relief when the focus turned to others and finally so many saw her for what she really is. And finally, the letting go of all her crap, and the acceptance that it was never about me, it was always about her (and THAT took a long time, believe me).

It is sad that women seem to think it is acceptable to attack one another, or to act foolishly and vindictively. High School Mentality (HSM) is a curse that some seem to never outgrow.

And for all that I have been accused of being confrontational over the years, I'd rather be seen as straight-talking, no bullshit woman than as a back stabber and immature bitch.

Ladies - be kind to one another, you never know what is happening behind closed doors. Friendships change and evolve, have the guts to say you have changed or grown apart and keep a semblance of civility, eh?

Surely we are all mature enough for that at least...

Wednesday, August 1, 2012

Muse Wars - The Remix - Part 2

Yes, once again Lori has posted Muse Wars.

As soon as I set my eyes on this photo I knew the temptation was too great - I had to post my Blog This winning entry from many moons ago. THIS one.

I think I will be back to post a new entry, I hope I will anyway... but this month is crammed full of social committments so I will make no promises.

But you should join in. Go on, have a go!

Oh, and please, do comment. It is pretty disappointing when the traffic is high but the comments are low. Especially when it is others who have joined in and that I always comment on myself. M'kay?