Weekend Grateful: Hope.

I follow a lot of blogs of Mum's with kids on the spectrum. I AM the mother of a kid on the spectrum. Autism has kicked my arse and the legs out from under me more times than I can bear to remember. Search this blog for ASD, the posts are endless.

Ten years we have been on this ride. A decade. My first born is now 13, quickly approaching 14. Puberty is running rampant, hormones are in overdrive, Year 7 school pressure is mounting fast.

Should be a horror story in the making, eh?

I am here to tell you otherwise. I am here to offer other mums something I struggled with during the bad days, the early hard days. I am here to give you hope.

If you had met my son when he was little, you probably would have reacted the way so many did. Pity. Pity for me, pity for us as a family, pity for the lack of quality of life you assumed this low functioning, severely affected little boy would have.

Yes, he was that badly affected.

Big Boy & Boy 1 2008

No matter that I adored him and believed deep within my very core that his strengths would win out, you, as an outsider, would have thought I was deluding myself. Hell, there were a lot of days I thought I was deluding myself.

But some stubborn, gritty, intense thing deep inside me would not accept the dire predictions of the professionals, of friends, of random acquaintances. Something called a mother's gut instinct. I fought against the world like a lioness in full attack, WE fought against convention, traditional ideals in the autism world, the specialists. Me, Big Boy, Wise Woman, even Boy 2. Our family core, our battalion.

He is thirteen. When you meet him you sense he is different (oh God, don't get him started on string theory...pleeease). He will never be your typical bloke. No, he is far too extraordinary. I could go on and on. But all I can tell you is the fight is worth it. And fight you must, for this is their very future we are talking about.



Boy 1 & C - August 2011
Best mates for over a decade

 This boy was with seven other boys at Adventure Parc for his little brother's birthday last weekend. Climbing rope bridges, swinging from pulley contraptions, launching over huge drops on a flying fox. He and his bestie only completed two of the four runs. Why? Because his mate has an issue with flying foxes and a fear of heights. I met them both walking out of the bush, only to be surprised at the role reversal. For once it was Boy 1 supporting, encouraging, just being there for his friend. And happy to do so.

My young man. No longer a boy. Well on the way to becoming the incredible adult all around him can now see. Yes, even the naysayers have had to succumb to a mother's vision. To acknowledge this amazing teen. Most want to bottle him, or at least swap their surly ones for him. I, of course, refuse.

I am so grateful to be able to post this, to share with others a positive outcome (so far). To offer hope. Believe in your gut, fight with your heart. The impossible is possible.

Thanks Maxabella, for giving me the opportunity to give back.

42

The meaning of life. Right now I am pondering the meaning of life here at this blog. What do I want from here? What is this blog to me, or more importantly to others?

When I began this blog over two years ago the community was small, tight, supportive. Now so much of it is about earning potential, stats, hits, comments, followers.

I have never been one to run with the crowd and crowded the blogosphere has become.

Is this why I am not drawn here as I once was? Is it why I do not have the yearning to write like I once did?

Maybe it is because I am writing my tales of fantasy for my dear friend, sending them off with love. Maybe that is filling the hole once satisfied by blogging?

Maybe I am sick of commenting and supporting those who offer none back? Only some, not all, but their silence pisses me off to be perfectly honest.

Maybe I feel the blogosphere is not the place I need to look to for ideas, ideals, friendship?

Maybe it is time for change.

I just don't know anymore.

You Never Know Who Is Watching... A Facebook Horror Story.

What would you do if you found out someone had used another friend's business page to spy on your facebook status? What would you do if you had proof that they then took a status written when you were extremely distressed, when your child's life was on the line, when you thought only your friends could see it... if they printed that information, took it into your child's school purely to cause trouble for you and to hell with your child?

Seriously, what would you do?

This happened to us last year, but it is only now I have the concrete evidence of whom the perpetrator is.

Right now I want to eradicate them from my proximity - to be so toxic, so purile as to risk a child's life????

What sort of scum does that?

Oh, that's right... the sort of scum who use their own child to try and cause trouble, even if that child is now becoming loathed by their peers. An evil hobbit whose spiteful, jealous nature knows no bounds.

You make me sick and I thank God I no longer am alone in seeing you as you really are.

Filth.

Living 1001 Arabian Nights...

"Scheherezade: These people sit for hours - just listening. It's a miracle!

Storyteller: People need stories more than bread itself. They tell us how to live, and why."

~1001 Arabian Nights~

Have you wondered where I am? I am here, but in an unfamiliar guise. I am Scheherazade, weaving my tales, casting my spell of distraction. Each day I am writing a new story, each week I am bundling them together and sending them off in the post of Australia.

Why? I cannot do much, I am too far away and her needs are met by family and friends who live in her proximity. All I can do, as she spends this endless, horrific month being bombarded by chemo, is to offer a distraction. I send my love woven in my words, I send her something to take her away, be it only in mind. I send her parts of me, birthed in short bursts of insane inspiration.

It is all I can do, it is so little, but maybe, in my own unique way, I am helping. Just a tiny bit.

Fight my friend, fight.

Fish 'n Chip Fridays

Sometimes all you need is friends. Last night a casual catch up was planned with some friends. Big Boy was away in the land of dark skies, Boy 1 had invited one of his besties for a sleepover, Boy 2 is great mates with the younger son of three of my friend who were all dropping over for a while.

Me, being the great culinary expert of the area, had previously decided to go the easy route and order a mass of seafood from the local fish and chip shop.

School pick up... Boy 2 asks if another mate can come for a sleepover if his Dad says yes. Cool. The more the merrier.

Other friends land in around 5ish, the healer of the Mount (my wonderful friend) mentions another gorgeous girl had rung and wanted to catch up. We then spent an hilarious hour or so trying to track her down as she ferried kids to blue-light discos and the such (cannot wait until she hears those messages).

By the time the fish and chips and other bits and bobs were on the table, there were EIGHT boys ranging from little to oh my God how did you grow so towering tall all of a sudden high. And three laughing Mummas.

Having good friends around is the best medicine and heals so much of the angst. This has been a hard week. To have time with these two beautiful inside and out ladies was exactly the remedy needed.

Sometimes it is the unexpected get togethers that are the best!

Am I here?

Feeling rather invisible and insignificant. Feeling rather helpless and useless. Feeling as though I am running and running and achieving nothing. Feeling very stabby.

Rationally I know this is not true, I know I am getting things done.

Guess I have the mean reds again.

Haven't heard any more news from my friend. This is very unlike her, especially as the last text was "call you in the next couple of days"... Which makes it all the more scary.

I do not cope well with waiting, nor with being helpless. But I need to be patient, for this is not my battle but hers and I can only be there when she wants or needs me.

Crap. Do not like these mean reds.

Yes, this is a very self-centred whiny post.

Life is Unfair.

I have a Billy Joel song playing again and again on an endless loop in my head. Only the good die young.

It is a strangely upbeat song for someone sinking into the darkness.

These are the lyrics which echo in my mind after hearing Big Boy's words when I rang him with the news... "Why do the nice people in this world suffer these tragedies and trials, yet the toxic nasty ones go forth without nary a ripple of discomfort?"

We have been friends for over twenty years, I can even pinpoint the date we met. 8/8/1988 - the day I began work at a large investment insurance company. Even through divorce, distance and life's ever changing cycle of demands we have always remained friends. We talk weekly. She and her husband flew in for my 45th bash a few years back. We have shared laughter, tears, anger and sadness. We have had drunken nights, saved kittens under cars, danced at each others wedding.

Friends. The genuine thing.

Today I received a text. In February they diagnosed her with a type of pre-leukaemia with a name so big I could not begin to pronounce it. It was the day she was due to have her large bowel removed after many years of issues. They did not go ahead, obviously. And in the months that have flown by my words of frustration and anger at the lack of action or treatment whilst the medical big wigs pondered this medical dilemma which is my friend, have echoed down the phone line.

"Do you want me to fly in? I am good at kicking medical butt after Wise Woman's fiascos."

"Not yet, I'll tell you if I need you."

"You sure?"

"Yep. For Now. You can be my secret weapon."

"Or your loose cannon, heheheh."

"That too."

Finally they decided to go ahead with her op... but today I received the text.

"It has developed into acute leukaemia. Op off, chemo starting next week."

I have a huge solid knot of fear pitted in my stomach. My gut instinct is sending huge red pulses of angst through out my soul. Those fucking idiots - they had caught it so damn early and yet failed to act. Now I am scared it is too late. I am terrified we will lose her. I am helpless, frustrated and angry.

And if I am feeling this way, how in hell must my gorgeous girl feel?

For God's sake, her girls are only so very young. She is a mother, a wife, a daughter, a sister, a friend. This is not right. It is so very wrong.

Only the good die young, and she is pure goodness to her very core. Please let it not be so this time, please, please, please...

The One I Didn't Know Was in Here.

I had a whole other weekend grateful post a brewing, about family and going home and the cycle of life.

Then a post popped up in my reader link:

Don't Laugh at ME.

One of my favourite bloggers, Apples and Autobots has a son on the autism spectrum. When I read of Bot I am taken back to the early years of Boy 1, for the similarities are endless. You NEED to read this post. This amazing, eloquent, articulate, wonderful blogger has explained beautifully one of the major issues we as Mums of special kids on the spectrum face. Sensory meltdowns, and the PUBLIC'S reaction to them.

And I am going to add one of my own stories, well, experience not a story actually.

Boy 1 was around five or six. We too were at a shopping centre, but one with open spaces and discount stores, plenty of room and little crowds. Still, if a bad day, not a feasible excursion. The day began as a good one.

We had perused the stores for a little while, and choosing my battles, we were in the last one. Start happy, end happy, at least that was the plan.

Near the front door of the department store was a clearance table full of Harry Potter merchandise. The three of us, MM, Boy 1 and Boy 2 were all surrounding this table picking what we wanted being the Harry Potter mad family.

The automatic doors began to open as someone else entered. It was in this split second I realised Boy 1 was standing in the tiny gap between table, front window and side wall. The doors had safety mechanisms to stop them closing on someone, not to stop them opening and crushing anyone between the door and the wall as they opened.

I screamed for him to get out of there NOW in the second he had to move as visions of him being crushed before my eyes danced in my head. And when I say screamed I mean SCREAMED!

It would hav scared any child, but to a child with sensory issues it was terrifying. Move he did. He ran screaming past me, past the checkouts into the store.

Crying at the top of his lungs "Keep her away from me, she is going to kill me, she is going to kill me."

You can imagine the reaction of the staff and the shoppers, all I wanted to do was calm him and all they wanted to do was protect him from the one person who could calm him.

It ended. I kept my calm as inside I disintegrated emotionally, explained he was on the spectrum, explained to my distraught son why I had yelled when Mummy really only yells at the times she is losing the plot. We went home. Eight years on I can still feel that solid knot of fear and sadness, of dismay and anger. It wasn't that these people laughed when it was all cleared, it was the way they then looked at my child. Flawed, disabled, broken. Never in my eyes, but that is certainly what shone through theirs. And right at that point the other emotion I remember is hate. I hated how they judged him by a label and by one incident, I loathed the path ahead when so many would do the same again and again. I wanted to SCREAM at them "Do you know him, truly know what a really special boy he is? Yes, he is facing challenges, but can your kids soothe any distressed animal on this planet by merely speaking to them for a minute? Does your child tell you they love you every 5 minutes and treat you as if their world orbits around you? Do they captivate the hearts of those who are supposed to be calloused professionals, yet bask in the brilliance of his smile and the sharpness of his mind? DO THEY?"

Of course I did not. I merely thanked them for their patience and walked away.

So, this is my weekend grateful I am grateful for people like Apples and Autobots who explain far more gracefully than I ever could. I am grateful for so many people who take the time to share, who let their open wounds bleed to educate and advocate, and for the wonderful kids like Bot, and Boy 1 and so many others who make this world an incredible place to be.
And I am so truly grateful for both my sons, my oldest with his incredible goodness, heart and spirit, my youngest with his compassion, support and brilliance.
 
This is a blog hop, though you may be now feeling like it is a lecture. Go, read some lightness and fun, laugh, smile, live. Just keep in mind the next little boy or girl you see having a bad moment may not be having a tantrum because mummy didn't buy what he/she wanted, his/her whole world may be spiralling like a kaliedescope of out of control, overwhelming images, noises and sensations inside that little boy/girl brain. So instead of judging or laughing, maybe go over and ask how you can help a mother who is doing her very best to keep it all together?

This my weekend grateful.

Farewell to a Very Special Lady.

My Aunt passed away last night. Again my cousin had the job of ringing me distraught, her words "Well it's official, I am an orphan" were not necessary as the sound of her sobbing made the reason for the call very clear.

May 2010 - Uncle Darleigh's Funeral

My Aunt and Uncle had played a very strong role in my life. In the past I wrote of my Uncle's fight with cancer, and then our loss of this wonderful man. But I do not think I have written of them. i can only do so briefly now, for the pain is fresh and raw.

I was Dad's Boy. The tomboy substitute for a son. As such I accompanied Dad on lots of blokey adventures, a lot of them at my Aunt and Uncle's farm. I grew up spending many days rambling and running around like a wild child over fields and in forests at their place. Wise Woman had dragged my Grumblebum Dad off the land into town when they married, and my Aunty Nancy and Uncle Darleigh took over the huge acreage atop the brother in the middle mountain. A dairy farmer's life was not easy, and whilst my Uncle worked the incredibly long hours, my Aunt taught at the local primary school. It was my Aunt's job which paid for so much over the years; the new irrigation system, the automation of the dairy, the enclosed tractor to help my cousin with his allergies.

She was the strength behind the man. She was an intelligent, articulate, straight-talking woman. When my sister died she refused to let us have Christmas alone and every year for quite a few she organised a wonderful extended family day.
She danced at my wedding, cried at my father's funeral, rejoiced in the birth of my boys.When my oldest was diagnosed on the spectrum she was there supporting us with every ounce of her teacher and loving aunt self.
 So big-hearted was this wonderful lady, not only did she raise my two adopted cousins, but she also took on my other Aunt's two boys when their mother passed away from cancer. Family. It was always all about family. Be it by blood or marriage or love, we were all so very important to her and she to us.


Now I wait for my cousin to ring me with details so I can once again organise to go home for a farewell. Aunty Nancy, I will miss you more than words can say.

Another Wise Woman has left this realm, she will be sorely missed by all who knew her.

The Family Style

I write. I love to write. I have loved to write since I was a child.

Now both my children write. Both my children write well.

Now, why would this be surprising, you ask? Well, for my oldest writing has not come easily. The incredible imagination and inspiration was always there but getting those words out in a harmonious fashion has been a long haul.

His speech therapy from age four consisted of lots of rhyming and poetry. And when I say lots, I mean one or two or three or even five rhymes a day. Created by us (as in he and I, but mainly he because it was no use me doing it, no help to him), until he was capable of creating by him. His therapist compared it to repairing a train track to comprehension and articulation, one that was damaged. You can see by his poem written at age seven that the track is pretty damn good now.

The next issue was writing. Hand writing. Due to his low muscle tone, and his obsession with perfection writing was a huge issue. Oh, and add in a preschool teacher who had told him he could not do it... hey presto! Instant meltdowns.

The wonderful former Principal and his grade one teachers started the slow journey to get past that one. And he did. By around grade five.

But in the past year or so, with the help of now utilising a laptop, his creative writing has blossomed. Incredibly. He now is so very articulate and talented that I no longer sit, brainstorm, push. I do not have to make him read his writing out loud to feel the rhythm of the words, he does this on his own. I do not have to tell him to not repeat and repeat the same phrases or words (yes, you can have echolalia in the written word), he knows not to by himself.  Now I read and go wow. And tell him to punctuate (in the excitement of a story spilling out this is his only sometimes forgotten rule).

My oldest has written a children's book for others on the autism spectrum. Simple, effective, positive and heartfelt. My oldest CAN write, by hell he CAN write.

My youngest. Well, when I was in primary school my parents were told by my teachers throughout, "MM is a truly gifted writer, you should be very proud and encourage this gift."
This fell by the wayside with High School and Uni (an economice degree? How the frig did I fall into that abyss?"), and the many awards rotted away in my cubby house.

I still have some of my pieces. My youngest leaves my supposed talent for dead. He hooks you in within the first second, and then the story sweeps you away into another realm. His style is polished, captivating, incredible.

For him it is in his blood. Never has he faced the demons my oldest has, it all was there, bubbling away, waiting to burst forth. His writing is amazing. We too brainstorm, but as equals. And I have learnt not to question why, as he always has a reason for taking a certain path. Mind you, it took me constantly being proved wrong in my doubt before I realised I needed to walk away and allow the brilliance to shine. The only small input I get now is again the punctuation reminder, though usually the response from Boy 2 is "Mu-um. It is only the rough draft!"

So, here we are. Three writers. And one amused Big Boy ("No way on earth did my genes have anything to do with this creative side they have!"). I wonder if the teachers truly believe the work is all theirs, because I must admit our writing style and rhythm, whilst different, is similar too. I can see how unique each is, but also note the close parallels. With Boy 1 it is understandable. The years of working together, of brainstorming, of reading, suggesting, helping when he was younger and the information did not flow fluently... of course you would expect my influence to have rubbed off. But all the teachers really need to do is look at the content, because those two boy brains come up with things I could not even dream of!

Boy 2, well whilst the effort was different I still was involved in the very young years. Our weekly sessions of bedtime storytelling where we each had seven nights to weave a verbal spell over the others would have influenced his thoughts on the way a story flows. And I... ah, whom I kidding. Boy 2 - it's genetic, but he is the improved version!

And they wonder why I call them the Augusten Burroughs and John Elder Robison of the next generation...

On a Bad Day A Little Light Mirth - Write On Wednesday

Day 2:
"I can't stress how important it is that we behead this fiend."
"Christ Johno, it's just the foil of a condom wrapper. And you know on these shoots we always use clear skins, they film so much more like unadorned flesh."
Shelley shuddered on the sidelines, awaiting her turn before the camera. When John had asked her to be part of this project she thought it was finally a sign he wanted more committment, that random hooking up would be a thing of the past and finally they would come out into the public arena as a couple.
 
He soon burst that bubble. A porn film, of all things this project had to be a porn film. She shivered again, nerves surfacing and unable to shake the feeling that this could be the biggest mistake in all her nineteen years experience. Not that she didn't like sex, hell, it was the finest skill she possessed, and she'd thought she'd trap him into feeling with a frenzy of ultimate wet-dream sexual encounters. How could he resist her big blue eyes gazing adoringly upwards as she sucked him off? Hah, yeah, right. It was that very talent that had apparently convinced him she would be perfect for this role, a means to pay off his HECS fees, and as he had convinced her, hers.
 
Behead this fiend, she thought, I'd like to behead his throbbing fiend alright. I'll give him a free circumcision without the anaesthetic for getting me to agree to this. Knew these braces would be handy for something.

Wordless Wednesday - One Year On.

T'keyah Dawson

26/11/03 - 06/07/10



The Romance Series - Write On Wednesday (Day 1)

"I can't stress how important it is that we behead this fiend."

Take 1: The Darkness and The Light.
"Master Jonah, you cannot, I implore you. If you behead him my life shall be over!"
"Mistress Wannawanker, I have no choice. It is my duty as the slayer of the church, it is what I was born to do. Again, free me from my shackles so I can cast out this creature of darkness from our world. He no longer belongs in the light, he has become a demon of the deep creature!"
Angelica turned away from his imploring gaze, the sight of this proud man shackled helplessly to the walls of the dungeon tearing at her breaking heart. A heart that now beat with an unbeforeknown passion. A heart as captive as the man on the wall. A heart consumed with love for the beast who stood beside her, her master of forever, the captor of her being.
"Master Jonah, you do not see him as I do, beneath the skin of a beast lies the soul of a man, I swear it does on my life."
"Mistress, you are blinded, the fiend has no heart, he uses you merely to toy with and once done he shall cast you away as he has all whom have gone before you. The beast knows no loyalty, he knows only of his lust for the flesh of innocent maidens, once you are soiled you hold no temptation for him."

Take 2: Passion's Spotlight.
"CUT!"
"God, sorry Sam. I don't know why I keep stuffing this up."
Maybe because you stink of last night's excesses, and can barely remember your lines on good days, thought Tiffany. She wisely kept her own counsel on this one, yesterday's debacle when she slapped the smirk right off his arrogant face mid-scene still too fresh in everyone's mind. This was only her second film role and the first with real headline potential and box-office promise. Anyway, she pondered, everyone knew Jay Ramsay was on the way down the ladder whilst her star looked to be ascending quicker than a new moon.

"Let's try it again everyone. Ready, 1=2=3- ACTION!"

"What do you think we should try now Officer Brent? We seem to be quickly running out of options."

"I think we both know we only have one option Miss Stilgo. If we are to help anyone in this mess we need to take back some control. I can't stress how important it is that we defriend this bed."

"CUUUUT! What do you think this is Ramsay? The sequel to The Fucking Social Network?"

Ink Paper Pen - Romance? Seriously?

"I can't stress how important it is that we behead this fiend."

Oh Lordy, missed last week what with sick kids, extra kids, stocktake, school holidays and end of financial year. Come back hoping to find time to delve in and what do I find? A romance prompt. Yes, I do read it it (nothing better than a good bodice ripper) but sure as shit can't write it.

*Sniff* Not happy Jan.

But will give it a shot if I get time (damnit kids, where are you with some distractions excuses reasons for not completing this when I need you?).

Oh, and rules are:

• The Write On Wednesdays Rules: First of all, I am not a big fan of rules. Feel free to get creative with the writing exercises. But please try to visit the other members of Write On Wednesdays to leave a comment. You can grab the button for Write On Wednesdays from my sidebar.
• Write On Wednesdays Exercise 4: A Masterclass in Fibrotown: Let's keep the timed theme. Write Allison's prompt at the top of your page. Set your timer for 5 minutes and write the first words that come into your head after your writing prompt. Stop when the buzzer rings! Do this exercise over and over if you wish.

Some of us are starting to see recurring themes/characters (Feisty Girl, for example) in their writing pieces so feel free to continue on from your previous posts. And consider exploring the world of flash fiction competitions...a great genre for aspiring writers like us!
Things to think about:

• If you would like the other members of W.O.W to give criticism on your writing pieces feel free to mention this at the end of your post. It would help if you can specifically pinpoint the areas for feedback.
• This is a learning process for me too. I started W.O.W because I wanted to get better at writing. I don't have all (any?!) of the answers so please contact me with your ideas and comments!

Will be back if I can fake it get to it.

Amazing Grace, How Sweet The Sound

Was blind, but now I see.

I walk arm in arm with my sons. At an age where it is considered uncool to hold your mother's hand, arm, hand my two do not hesitate. As we walk we talk. "Did you hold Nanna's hand when you were our age, Mum?"

"Yes" I answer, then begin to laugh.

"What?"

And so I tell them. My mother had severe sight issues from my first memory. She, her best friend and my Grandmother had sat for hours in her terrace house childhood home and watched the welders work below in the factory next door. Back then it was not common knowledge that such unprotected viewing would cause permanent and irreversible damage. My mother was the worst affected of the three.

That term... bottle top glasses? Well, those were hers. So thick that her beautiful brown eyes were distorted behind them.

As a teenager in the 1930's she loved going to the beach. It was even more appealing as she could use her sunglasses to hide her vision issues from the coolness of a teenage world. Yes, even back then people with perceived weaknesses were teased, it did not help that she was not only stunning but chronically shy.

As she grew older her sight grew worse. By the time I was a teenager my mother had been considered legally blind for quite a few years.

I grew up walking arm in arm with my mother. I never developed teenage embarrassment, for I knew when we walked together if she did not have hold of my elbow she would trip, fall, be hurt. To the casual observer it merely looked as if our arms were linked in affection (as they were). They did not hear the running commentary between us...

"Kerb, Mum."

Copyright Madmother - 1986

"Ramp, Mum."

"Car coming."

Now to the reason I laughed. As I grew older we always joked I was escorting her nicely limited Mastercard across the road. Once I graduated and hit my middle 20's the joke was switched to her escorting MY Mastercard across the road as the limit was higher than hers.

This was the story I told my children yesterday.

"Wow Mum. You have more than one credit card so we both have to escort you and your purse across the street then!" This from my impish younger. The older just laughed. And both tightly linked their arms a little harder through mine.

I lived my whole life with a loving mother who was sight compromised. Now my very best friend is facing the same. Her children are six and nine (nearly), and she is now classed as legally blind. Retinitis Pigmentosa. A genetic eye condition that causes the light-sensitive retina, located at the back of the eye, to degenerate slowly and progressively.

She is beautiful, positive and a wonderful joy to be around. She cannot see kerbs or stairs or the joy in her children's faces if they are not right next to her.


Like my Mum, she has days when it gets to her, when her dreams of the future are clouded and dim. But, again, like Wise Woman, these are rare.She does not want pity, she wants life. We tend to joke about it, though there are times when laughter does not help.


When she told me of her diagnosis I could tell she was over the pity party others had been throwing for her.


"Okay, so not good?"


"Nope. Didn't want to tell you before, didn't want our friendship balance to be compromised with you feeling sorry for me."


"You just didn't want to tell me all those times we went out and got blind you really were!"


When she stopped laughing...


"Oh hell, I knew I should have told you before the others..."


"Hey, don't worry, at least I have someone to give Mum's talking books to when she's gone."


"Oh, you are bad, seriously bad. Thank you."


See, both these women in my life were alike. Determined, positive, strong. For all my years with my mother I am now able to support, console, listen, arse-kick, and just understand what my friend is going through. And when things get hard I remind her of the 90 year old still managing to do her tax on exel. On a REALLY big computer screen, yes. On the biggest font you can imagine, yes. On the highest view limit available, yes. But still determined and capable. Right up to the end. If you make your mind up you can do anything... it just may be that you have to approach it a different way from before.

Copyright Madmother - May 2011

Oh, and as my friend's credit card limit is higher than mine, I just might have to escort her carefully across busy roads for years to come.

Hello? Is It Me You're Looking For?

I'm sure you've all seen this on Facebook, blogs, websites recently. But it was so appropriate for how I feel today. I am still in my pyjamas at 3pm. Not because I am sick or depressed but because I have been madly answering phone calls (business), looking up files (business) and as it is school holidays, I DON'T FUCKING HAVE TO BE DRESSED TO DO ALL THIS!

This week has been bedlam, I have had extra kids over (great for my two) for four days of this week, stocktake on our retail store was yesterday (yes, my two were dragged to that), and there are all sorts of negotiations going on with our other businesses.

So, yes, today I smell bad, I am not yet dressed, and I have not yet fed my children. Don't worry, at eleven and thirteen, when Mummy says - or in this case mouths with one hand over phone mouthpiece - "get it yourself", they actually do.

I am going to have a wine tonight. And probably a whine, but the worry with that is that Big Boy has had a worse week than me and he will probably top mine as I top up his glass...

See after the sanity returns.

Yaysayers Vs Naysayers

Wow, embarking on this publishing lark is certainly an eye-opener.

There are those who want to help; hell, they are helping! Each little bit of advice, support, guidance is so appreciated, be it a link, an experience or just a good on ya Boy 1.

I love that others are honest about the trails and tribulations, the rejection, the struggles, the "WHATEVER YOU DO, DON'T DO THIS!" tales. It ALL helps me help him. I never said it was going to be easy, I said this was an experience I wanted him to have. Another learning curve of life.

BUT, you know what?

It does not help when someone goes "Bah, good luck, my friend so and so has been trying to get published for ten years..."

or
"You are kidding yourself, why are you bothering?"

or
"What sort of a book could a kid write, I could write better than that!"

Firstly, read it before you make stupid comment, dipshit. And from the things I have read of yours and your lack of a grasp of the English language, ah no, you couldn't!

Secondly, I am bothering because I have taught my children if you want to do something give it your all. If it doesn't succeed, then the success is in the experience.

And thirdly, I do not know your friend or what she has written, I know my son and I believe in what he is trying to do. Oh, and as you are a close friend, don't you think a "Wow, what a great thing to try. Isn't it amazing how far he has come" would be more appropriate? Considering you have known him since birth and you teach kids on the spectrum? Seriously, how miserable a person are you? Really. really sad comment.


I have come to the conclusion it is like dieting. Never mention the word to some people because all they will do is ridicule the idea and belittle your ideas whilst pushing you to have the large slice of chocolate cake.

Okay. Rant over. Feel better now.

The Night We Met

And no, I am not stealing Nadine's story - but go check it out. Our local publishing house and author claim to fame...

This is the story of how Big Boy and I  well, became Big Boy and I. Thanks Bern - but mine is probably a little long and convoluted to put in a comment.

1993, a fine year for romance... or maybe not. The first quarter of this year I was backpacking around America, Mexico and Canada. The previous year I had completed six months in Europe doing the same. I arrived back in Oz in March, just in time to walk into a local pub to surprise one of my besties for her birthday. Little did I know this date was going to be important for the rest of my life. Not that I met HIM that night, but it will become clear later.

March was also the month I attended the first of two weddings. Coming down from the high of nearly a year overseas I did what any self-respecting party person would do when trying to settle back in to reality, I picked up the best man. Not that he was the best man, he was more of a young, fit and hot you'll do for now cause I'm bored sort of man. Did I mention young? I was 29, he was 22.

I was living back in my country home town, intent on spending time with family. He was a part time distraction to keep the insanity away. After the bright lights of many fine cities and intense experiences, returning to my childhood haven was a little like watching flies stuck on drying paint. A zzz-zz every now and then and not much in between.

Roll around June, and the next wedding. This one was in Newcastle, a couple of hours drive away. The bride had already drilled me on the "hot" best man, and being the ornery beast I am, I had told her in no uncertain terms: "Not interested!"
"Madmother, you are nearly 30, don't you think it is time to give up the toy boys and meet a nice guy and settle down?"
"Ah no, I am quite happy with my not-nice hot guys and not settling anything, but thank you for thinking of me."

I was still happily bumping uglies with aforementioned toy boy and was seriously NOT INTERESTED (you can see where this is heading, right?).

Off I toddle to the Novocastrian Nuptuals, staying with a friend who lived in the area (no, not THAT sort of friend. A happily married mate and his wife and sister).

The wedding was fun BUT the wine was terrible! Remember, I am a broke newly returned backpacker without a brass razoo to buy drinks, especially ones priced by this large flash hotel. So I go the "other" option at the bar. Sweet Sherry.

You can imagine how messy that became rather quickly.

The BOY had been introduced to me at the church.  It was rather flattering the way his eyes had lit upon meeting me, but there was no way I was having a bar of it. And, I must admit, I had my eye on the MC. Every time the poor devil tried to talk to me at the reception I walked away, quickly.

But the Sherry intervened. As did the newly ex-wife of the MC who was also at the wedding!

By the time the bride announced an auction for the two groomsman I was feeling little pain. And barely noticed when I bid $2 (I was broke, remember? And the first bid was 50 cents so I was being generous) and she called an instant stop to the bidding and announced me the winner.

It was nearing the end of the ceremonies, and my two slaves, plus the MC and the ex all decided to party on at a nearby nightclub. Or two.

From that point Big Boy bought all my drinks, thus switching to my drink of choice; Southern Comfort. The MC and his ex got into a heated discussion at the bar.

Somehow BB and myself ended up pashing on the dance floor. I was feeling no pain. And he was hot. Even if he was a set up.

He walked me back to my car, which I was in no state to drive - and had no intention of driving - for more pashing. Car pashing.

I think he got my number pretty quick when I desperately needed to pee and walked up to the bushes on the side of the road, and squatted in the gutter - on one of the main streets of Newcastle. Hey - it was in the bushes and I was desperate!

We drove - or rather he drove back to the townhouse he was staying at with 4 other guys. I crashed on the lounge for a couple of hours (way too drunk for any hanky panky) and then snuck out before dawn.

Without leaving my number.

Yes, there is more to this story, but it can wait for another time. After all, 18 years, a wedding ring and two kids later we are still together.

Oh, and that date of my besties birthday? Well, guess who else was born on that date?

The Beautiful Words of Wisdom from a Deepak Boy.

Driving down the mountain to pick up Boy's best mate C for a few days, I asked my oldest what he would say about Asperger Syndrome if he was trying to explain it to a room full of people. Now, you need to remember he is only 13 and still finding his path on this journey. But I was curious, after reading another blog and discussion on the topic, as to exactly what he would say.

Boy 1 today - Copyright Madmother

"It is embracing your own kind of normal" he begins, "Whilst there are things it makes me struggle with, it also gives me a different outlook on the world and uniqueness creates greatness." At this point I am struggling not to tear up.
I ask him what would he do to explain it to people who don't know anything about Asperger Syndrome, to pretend he is a motivational speaker (which he dreams of), in a big hall with lots of people who have no idea about ASD.

He is quiet for a little. I ask him if it is too hard... "No, just unexpected and I need to think about my answer."

He is silent for a moment longer.

"Asperger Syndrome means you are different, not bad or good, it just means you are different. You stand out from the rest. You should enjoy it because it means you are a unique individual. It also means those hyper-senses can be used to your advantage.
Keep an open mind and you may learn new things. I would tell them about the things I found hard when I was younger, like noises and changes, and writing. I would also explain that these things are less hard now I am older. They also need to think how they are different and how it would make them feel if people teased them or tried to make them feel bad. Maybe if they talked to or asked us kids on the spectrum they would find out we like the same things and can be friends. Everybody needs friends. I am really lucky with my friends.

Do you think that would be good Mum?"

Yes, my son I think that would be very good. If only we could teach everyone to embrace the unique, wouldn't the world be a wonderful place? I adore my own little Deepak, he makes this world a positive place.

On this same note, a friend on Facebook just this minute sent me this link, ties in nicely methinks (though about ADD, it also resonates for ASD).

VIVE LA DIFFERENCE!

Parenthood Review - Maybe I should do this weekly?

Hello again. It is time for me to once again address this week's episode of the Ron Howard acclaimed series: Parenthood. Well, the bit in it that addresses Asperger Syndrome and its accompanying issues any way.

Yes, again. Stop rolling your eyes, I am entitled to my opinion thank you.

Credit: NBC

Last night's episode here in Australia contained an epic emotional meltdown in the emergency department of a hospital. To summarise briefly, Max (the child with AS) and all of his extended family (parents, sibling, grandparnets, aunts, uncles, cousins and various partners along for the ride) were assembled waiting for news of his cousin, Amber, who had been in a serious car accident and was undergoing surgery.

Withing three minutes of the beginning of this episode Max and Adam have a confrontation as Max appears to show absolutely no empathy for any needs other than his own.
"I wanna eat"
"Right, let's see what they have here."
"No Dad, you said that we could go to get pancakes
"Hey"
"and now I've been here for an hour and a half
"Hey"
" and I wanna go."
"look at this, this looks good,"
"No I don't want a danish
"Max, take it easy. This is one of those times where we have to be patient, okay. We're here for Amber and Drew..."
"No. You said that Amber was not going to die..."

You can see where this is going, right? It escalates into Max shouting, "I'm hungry! No Dad, I don't care about Amber right now. I'm hungry and I wanna eat now!"

Of course his Grandfather then yells at him, which takes it even higher... Max tells him to shut up, lashes out at his mother physically... and so on and so on.

Of course we all compare this child to our own, especially those diagnosed with Asperger Syndrome.

But, everyone needs to keep in mind IT IS A SPECTRUM! I watched this episode and listened to Adam talking to his son about empathy, what it is, how to act, and I can tell you I am with Tony Attwood on this one...

At a conference I attended many moons back, Attwood stated: "It is a misconception that these children do not feel empathy. They feel empathy, but have difficulty expressing it.

We have an emergency hospital room story of our own. My mother. Another fracture in her spine. Along with bleeding from her bladder. A large hospital in the capital city of our state. We arrived at 6pm, and were still waiting for her to be admitted at 10pm. My oldest was around the age Max portrays, maybe a little older. I asked Big Boy to take them home, and I'd book in somewhere for the night. It was an hour's drive to return to our mountain.

Both my children refused, point blank. Both stated unequivocally that they were staying to make sure their Nanna was looked after and settled and then we would all go home together.

BOTH. You could not have picked the child on the spectrum that night. Amidst, noise and chaos, blood and screaming, flickering fluro lights and stressed families they were calm, determined, supportive. Of me, of my mother, of each other.

And so that scene and THAT meltdown was one I found totally foreign. And yet I know others related, and I know it is yet again a case of informing, educating and for the drama, worst case scenario.

Boy 1 & 2 May 2011: Credit Madmother

So what did I get out of the show last night? Gratitude. Thank you God for giving me this amazing child, for both my incredible sons. Thank you for his heart, and strength and compassion and EMPATHY. And thank you for this incredible journey and experience. It sure as shit ain't boring!

Done for this week, and as it was the season finale who knows when the next will be.

Oh, and that night at the hospital? We arrived back to our beds at 2.30am.