Flog Ya Blog Friday... Welcome to Somalia

Rules here at the boss's house.

Link, follow here, tell me I'm great, yada, yada...

A rehash of an old, old piece. Many of you would have read the lovely

"Welcome To Holland"
c Emily Perl Kingsley

if you haven't, well Google is your friend. And I have edited to include a link in the author's name. It was written in reference to Down Syndrome, but many choose to bastardise the idea and apply it to Autism Spectrum Disorder.

WRONG!

Ask any mother or father if raising there child has any similarities to this piece, and I'm pretty sure you would receive a resounding NO! And so, in keeping with my twisted appreciation of such stuff... I rewrote it. A little. You may find this piece on other sites, I wrote it around two years ago after yet another friend vented her anger at the original being used again in reference to autism. So on Flog Ya Blog Friday I give to all of you:

Welcome to Somalia

I am often asked to describe the experience of raising a child with Autism, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Somalia."

"What the...?" , you say, "What do you mean Somalia? I signed up for Italy, I paid for Italy, by God I am going to sit here and yell at you stupid people until someone explains how the hell a plane with a qualified pilot can screw up and end up in a war-torn African country instead of nice, relaxing, non-conflict Italy! I'm sorry, but you are wrong - this must be Italy. It has to be Italy. I will not accept Somalia when I organised and paid in advance for Italy."

But there's been a change in the flight plan. Terrorists have taken over the plane. Now you are in Somalia and if you escape with your life you'll be lucky, but even then your sanity will be severely damaged.

One important thing is that whilst they've taken you to a horrible, disgusting, filthy place, full of war, violence, pestilence, famine and disease you'll probably survive. It's just a different place. A very screwed around, hard, emotionally gut-wrenching different place.

So you must now try and outwit these terrorists. Fight for your life and the lives of those you love. You will meet a whole new group of people you would never have met, and most of them you would never have wanted or wished to meet.

It's a scary, truly unpleasant and very different place. It's far more exhausting than Italy, more life-threatening than Italy. But after you've been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around... and are scared witless by the violence, degredation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.

Meanwhile, everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. They look at you, thin, drained, emotionally and physically exhausted, covered in bruises and scratches, and living in fear of everyday life.

For the rest of your life, you will say "Yes, Italy,that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... as you spend your life mourning the fact that you didn't get to Italy, you will never fully relate to others the trauma and emotional scarring, despondancy, desperation, solitude and terrifying lonliness of Somalia.

 This is what it is like bringing up a child with Autism Spectrum Disorder.

 So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming "I f**king hate you ", you can say to them:

SHIT - is that what Somalia is like? I had no idea.

God knows where this Holland is, as I sure as hell don't!

Life with autism - not a bloody holiday!

Autism Sucks

GUILT

My latest offering on the Autism Sucks (but our kids don't) website.

Memoir Monday - Anzac Day: Lest We Forget

Now normally I use these posts to carry on about some of the stupid crap I have gotten into during my forty six or so years of life, but here in Australia this weekend is truly special.

Yesterday was Anzac Day, April 25th. Today we have a public holiday to commemorate due to it falling on a Sunday (not sure of the logic, but hey, any excuse for a BBQ, a long weekend and a little two-up). I have not attended  an Anzac Day march for many years, though we do watch the bigger gatherings on TV. Having a child with Asperger Syndrome is not conducive to attending such crowded, loud celebrations.

But, although I have attended many marches over the years right into adulthood, it is the ones of my childhood in my small, country hometown which stick vividly in my mind and can cause the tears to well.

I would swell with pride as I watched our proud diggers march, many who were not up to the walk were pushed in wheelchairs by other frail mates. My uncle was one of those who strode the path walking tall and proud. Head held high, medals proudly adorning his chest, he strode tall and true. A survivor of Changi, the horrors of war had physically and emotionally scarred him forever, but to me he was a loving part of my family. The typical Aussie larrakin, he lovingly teased and tickled, taking pride in my little big mouth attitude. It was not until I was older and allowed to help out at some of his soldier mates get togethers that I began to realise the horrors he had survived.

And so, on Anzac Day, many years after he has departed this earth, I dedicate this Memoir Monday to him.

Lest We Forget.

Uncle Jack

My Aunt was sobbing softly

In the kitchen’s dying light

As I hid deep in the corner

I just knew that things weren’t right

We kids had marched at daybreak

Up early on that day

Young children, oh so earnest

For the ANZAC Day parade

Uncle Jack strode strong behind us

Laconic smile at his best

With all the medals shining

Pinned high upon his chest

Every time I turned to look back

His cheeky wink was sent

And he blew me sloppy kisses

As along the streets we went

But now my Aunt was crying

When I thought she should be proud

Cause my Uncle survived Changi

He was a digger tall and loud.

Mum put her arms around her

Gently asking: “Is it worse?

Have the nightmares lessened,

Or does he still lash out and curse?”

He had survived such horrors

Watched most his good friends die

On that gruesome Burma railway

As it sucked away their lives

A gentle man had signed up

And died with all his mates

The man who had returned home

Broken, scarred and full of hate

Night terrors revealed so much

Of that he would not speak

Where he’d strangle all his captors

Whilst deeply lost in sleep

By day he’d still be funny

A loving family man

But nights were filled with violence

As he battled them again

 

My Aunt wiped away the tearstains

And stood up with a sigh

“Well, be best be getting cooking

It’s nearly their teatime.”

I walked out of the kitchen

To where the men sat in the sun

My Uncle Jack hugged then asked me,

“Whachya doin, little one?”

I held on so tightly

Words trapped within my mouth

Trying to say so much

But they wouldn’t come on out

Instead I said “I love you”

When I meant “You are so brave.

Thank you for coming home again,

And for this life of mine you’ve saved.”

Just To Let You Know

Any future writing challenges, be they Muse Wars or other, will be done on my writing blog. HERE. It was cluttering up this blog too much.

Cheers. Happy reading.

Nothing

I have nothing. Blog block big time.

Dammit... Wanted to be first in Line But Blew It!

Bloody Aussie Mummy Bloggers Group *mutter*mutter*. Made me miss my space *grumble*grumble*.

Anyhooos, you know the drill. Link, follow, kiss my ass.

Rules as by the krazy kreator of FYBF:


Follow my blog (if you haven't already done so).



Grab my bubbly button and post it on your sidebar.



Link your URL below.


Follow at least 1 linkyer/blogger (Pay it forward is the name of the game).

The list will be open for linkyers on Fridays (I've extended the closing time by the way, to accommodate my non-aussie peeps).

A new and fresh link list will open every Friday. And you will have to link up AGAIN. The previous link list does not carry over to the following week.



And lastly, have lotsa fun!




And post lots of lovely comments too!

I know I have been remiss the last few days, but it has been a fairly difficult week. Will be back over the weekend, I promise.

In the meantime, enjoy FYBF!

What A Bloody Nightmare of a Day.

It started badly. It actually began last night, not this morning. We had a lovely family day driving in the country visiting galleries, antique shops and bookstores. But a full day out meant no Playstation. A full day out meant no X-Box or computer. In his eyes, it meant no downtime or defusing, as much as he loves exploring the depths of musty old wears shops searching for treasure. He does not count running with his brother in the sunshine laughing, playing as relaxation. The only way his brain seems to give him respite from constantly spinning ideas is when he is on a console.

For him, today was not acceptable to return to school. But he had to. Meltdowns began as soon as the bell went. Some girls told him he needed to put his bag elsewhere. He could not cope. By afternoon the meltdowns had escalated. By pickup he was beyond it all, in a rage, angry at anyone who came near.

I was angry too. He is twelve, he needs to take ownership and control or else he will not make it through life. I told him I was disappointed, disillusioned and lost as to how to help him. He rebuffed all aid today - what did he expect of me or any others? He had no answers, could merely say sorry. My response was to tell him I did not want the words, I needed to see the actions. I am sad. And lost. I was honest in my frustration even while reminding him of my love and belief in his ability if he could only help himself and control these rampant emotions.

After a long discussion we moved past it, I had to attend a meeting, he did his homework and promised me he had turned it around, and would continue to. On my return both boys had settled in bed. He came down to fill his water bottle as I watched Good News Week. Right at the spot they began to mock autism and its sufferers. A show he loves to watch in the holidays belittles him. Just what he needed and right now, right now I could kill them for adding to a child's belief that he does not belong in this world and he is not worthy.

Mikey Robbins, and Paul McDermott,  I hope you both suffer the pain of  anguish such as I just watched in my child. Thank you - it would never be funny to a mother of a child with ASD, but tonight, tonight you may well have crushed the small part of hope or courage my child had left. Hope you are proud of yourselves. People would say that your talent has vanished when you resort to taking pot-shots at the innocent. It is called discrimination you stupid, stupid people

 

And Again We Fall.

How on earth do I help him when he cannot help himself? My heart breaks as he has an epic fail day once again.

Do they think I am too hard on him? Do they not see the heartbreak behind the tough facade? I have to be hard, I have learnt through experience that to comfort and sooth leads to further emotional degeneration. Can they not understand how much I fear him disintergrating? Permanently?

What the hell do I do now.

Dilemmas, dilemmas...

A very quick one as it is a glorious day and we are off on an adventure!

I am debating whether to swap to a domain name, ie a .com instead of blogspot.com, but am wondering how to manage all four blogs. I guess you can create separate pages in the domain to host each one? But how is it transferred over?

And since Lori mentioned it, do you keep your comments upon changeover?

Oh, and what is going on with Blog This? If you say you are going to announce the winners of a challenge then please do it! Four days later, new challenge started and no winners from the last one? Always seems to happen when I'm in the top few. Starting to feel like a tall poppy, and remembering why I stopped entering. Challenges are meant to make you feel good, not bad.

*Sigh* Yes, it does make me snarky.

Feeling Mellow #4 - The Friendship Posts

I have a friend. An Internet friend. Some could argue that this does not equate to a real friend, that a cyber friend is not a true friend. I would argue the opposite. A friend is someone who supports you, laughs with you, tells you when you are wrong, and is there when needed.  A friend is someone for whom you would do the same, and who touches your heart in a myriad of ways. A friend offers you the wisdom of their experiences in shared dilemmas and life experiences. Kakka is my friend. She has helped me through the darkest of times, offered me support across the miles, listened when I have ranted and railed at the injustices of it all. And laughed along side me at the silliest of things.

A beautiful blogger, she is becoming known throughout the cyberworld as a supportive constant, commenting, reading, contributing in many, many ways. Her wit amuses and dazzles many in her Menopausal Mumma blog, and then she inspires and motivates us with her positiveness on The Half Full Glass. Even in the face of evil she looks for the good. Oh, she is one hell of an incredible woman, so much stronger and more gracious than I could dream of being.

And so to her, as she struggles with sadness, I send my love. Across the continent, I offer my shoulder to cry on, my ears to listen, my unconditional support and even, not that you would, my car to run over the dickhead if they ever find him. Anything, and I do mean anything you need, do not hesitate to ask, Karen. That is what friends are for. And do not ever doubt that a friend is exactly what you are.

I must admit I am not feeling mellow in this one, I am angry about the injustice of an ugly world. I am upset that a friend is in pain and that a good woman is suffering. Not mellow, oh no.

Flogging Time... Whip Me Baby

Sleep deprived (yes almost a permanent state at the moment) thanks to a blackout at 2am for a few hours causing hysteria in Boy 1 with his fear of the dark. Woohoo, just GREEEAAAAT!. How the hell a kid wakes from a deep sleep the minute the night light goes out, I have no idea. Anyhoos, not of importance for this.

Flog Ya Blog Friday. You know the drill. If you don't, here it is:

• Follow Mummy Time's blog (if you haven't already done so).
• Grab my bubbly button and post it on your sidebar.
• Link your URL below.
• Follow at least linkyer/blogger (Pay it forward is the name of the game).
• The list will be open for linkyers on Fridays (I've extended the closing time, by the way to accommodate my non-aussie peeps).
• A new and fresh link list will open every Friday. And you will have to link up AGAIN. The previous link list does not carry over to the following week.
• And lastly, have lotsa fun!

I know, I know...

I missed a day of my five family days of fuzziness, but I was spending my one day off with Wise Woman 1. Isn't that better than sitting at the computer blogging about her (which was the one I intended to do)?

I am at work right now so I'll do my post tonight when I can access my photos.
Sorry. I am terribly unreliable you know...

Blog This Challenge 40: Rehashing a past Blog Moment.

Tell your readers about a weird co-incidence, freaky story or a six-or-less degrees of separation moment!

BLOG THIS

I am rehashing a past blog post as this is a topic I wrote about a few months back. Freaky, really. One could even say it is a weird co-incidence that I wrote this exact entry months prior to the challenge being set.

Do do doo do... do do doo do.

(Bad imitiation of Twilight Zone theme song, lol)

My Challenge 40 entry is here:

Six Degrees Of Separation

 
 

A Very Tired Mother of Mad, Thinking About Her Old Grumblebum Dad.

Cannot think. Can barely speak. Am tired beyond comprehension. Was tired yesterday after the mad social lives of Boy 1 and Boy 2 these holidays but then last night, well last night was a disaster. Boy 1 suffered nightmares, sleepwalking and anxiety, Boy 2 came down in the late hours, unable to sleep without Boy 1. I ended up on lounge, then gave up and did computer stuff instead.

So please forgive if todays warm and fuzzy five family entry is purely fuzzy. I am in a fog.

And when I am tired and feeling wussy I think about my Dad. Grumblebum, the eternal pessimist (yes Big Boy, I do KNOW where it comes from).

 I wrote about us here. True story, and one of my first and fondest memories of GB. Other, more vague recollections, are of being carried along the beach on GB's broad shoulders feeling as tall as a giant; and of climbing up his trouser leg when he would not pick me up as demanded. He smelled of cigarette smoke and Brylcream and had a loud, booming voice.

Grumblebum was a big man in every way. Stood six foot two, wore XXXL at one stage later in life. Until the cancer shrank him back down to an XL. Even at his funeral we needed six pallbearers to carry his diminished frame.

Straight shooter, typical no bull cow cocky (though Wise Woman made him move to town for her). Worked hard all his life. Played hard too. Was of the era that the blokes went to the club whilst the little woman stayed home. Of course once I hit eighteen that all changed. When I was little they called me "Dad's Boy", being the mad tomboy I loved it. When I grew up it became "The Offsider". Just as appreciated.

One of his proudest moments was me up on stage at my wedding calling the barn dances. Well someone had to take control, the bloody DJ had no idea and the whole thing was rapidly turning into a shemozzle. So I did. And he loved it. Dad's Boy in her full wedding regalia, microphone in hand..."with a one-two-three kick, back two-three kick..."

A chip off the old block.

I love you Dad, I even miss the arguments, you cranky old bugger.

Memoir Monday - When We were Very Young

I'm getting an early start this week. Memoir Mondays are (in Trav's words):

Hey y'all. This little thing is called Memoir Monday, and I'd be thrilled if you gave it a shot. Just jot down a story about yourself, grab my code down there, and I'll link you up to be read by all my wonderful blog buddies. The only rule? It has to be true. I am personally doing what I can to help cure your case of the Mondays. Thanks for playing along!


In keeping with the five family days (oops - forgot to mention that, did I?) theme this week this memoir is from my youth. Our family took off a couple of times a year for caravan holidays. Mainly travelling up the North Coast to sunny Queensland.


Now Trav, like your family ours was somewhat traditional. Mum stayed home and did the happy housewife stuff, Dad was the breadwinner and the head of the house. We two girls did what we were told, especially when the treats on holidays were dangling in front of us.

Caravan packed, kids in the back off the Holden, off we'd toddle usually about 5am as my Dad was an early departure man. The highlights of these tours included the Golden Circle factory (the smell of burning sugar still makes me wanna barf), the Big Banana, the Porpoise Pool, Currumbin Wildlife Sanctuary and Santa Land with a miniature village. Real family time with Dad smoking like a chimney, and us passively inhaling in the back seat with the windows closed. Ah, those were the days!

Oh, and no comments about the plaits. I was a kid, okay. No choice given in hairstyles.

A warm and fuzzy one today, in keeping with five family days. For a more typical Madmother Memoir check the other entry on my skating blog.

Mad as Hell: It's Time For Change

Putting on my serious cap for a bit. Most of my readers realise I have a beautiful son with Asperger Syndrome. Boy 1, now twelve years of age. A little back I documented the bare bones of our journey so far. Have a read.

The Road Less Travelled: The Tale of a Boy and his Journey into Autismness I , 2 , 3 .

Now, as you read of those years of therapy and intervention consider how much, or in our case how little, we have accessed through the public system. I would estimate it at around 10%, and I am being generous there. We are lucky. My amazing mother, Wise Woman, has funded most of the help needed for my son. I would guess, to this point, it has cost her around the $100,000 mark. Well beyond most people's financial reach. We are not doing anything fancy, we are not travelling countries, trying extreme or expensive therapies. We are merely doing the basics trying to help our child.

Costs breakdown to something like this:

• Speech therapy: $100 per hour. In younger years weekly, older monthly.
• Occupational therapy: $100 per hour. In younger years weekly, older monthly. Once programme in place can be managed at home or in school with some monitoring by OT quarterly
• Psychologist: $200 per hour. Frequency depends on anxiety and behavioural issues at the time. Can be weekly for months when things bad. THIS does not include psych sessions for sibling. Refund of half from Medicare if under enhanced mental health care plan.
• Paediatrician: $220 per session. Varies, more often when younger.
• Teacher Aide: up to Grade 4 five days a week. Three to four hours a week funded by education department. TWENTY-ONE hours funded by family. Approx $22,000 a year. Varies on aide experience, hours funded, etc.

This is the bare bones, there are so many other bits and pieces, incidentals, medical expences. And so little help. The public waiting lists are abysmal. The funding even more so. And as parents of a special child you are too damn exhausted to fight the system for funding. I fight ALL the time just for his basic rights, I have no energy or reserves left to fight for more help.
Thus, it was with interest I read my friend Fe's post, which lead me to another blog, and then onto a new site.

This is a site dedicated to instigating change. It is desperately needed. Even if you don't have a child, family member or friend affected please sign. It can make the difference between having quality of life, or not. We should be ashamed that the so-called lucky country is not for so many.

My words are not as eloquent as usual, they are stilted and cold, I cannot seem to convey the emotion in this. I am tired. We return to school tomorrow and my beautiful son is having anxiety attacks, and his stress levels are off the scale. All my emotional reserves are being poured into trying to help him. And so a part of what I am asking here is for you to be strong for me. Read, sign the pledge. One voice is so small, but many can move mountains.

Happy 51st - Wish You Were Here...

I attempted to write this yesterday, but the blog Gods decided it was not to be. Between computer troubles, internet connection woes and my own personal dilemmas it just was not happening.

The 10th of April 2010. It would have been your fifty-first birthday, instead you are eternally nineteen and a half. Happy Birthday my sister. Gone but never forgotten.

                    1963

1964

1966

1973

1976

1978 - the year we lost her.

Happy Birthday. I would give anything to see your smile and hear you laugh one more time.

Life is fleeting, never take it for granted. Love those around you and find joy in the little things.