Can I Scream Now?

There must be something in the water, or should I say something stirring my waters... But like the wonderful Kelley over at MagnetoBoldToo I have had this horrible feeling of dread for weeks now.

Waiting for the other shoe to drop...

My child is a complex blend of brilliance, blinding beauty and batshit craziness. My child dazzles in his happy moments, and despairs in his darkest depths. My child, who puzzles all of us... even his psych, with his inability to understand the social web of life, whilst being so far advanced of his years in articulation, emotional perception and intellect.

His teachers, whilst wonderful, just don't get what his short life has been like with a brother on the spectrum.

One of them did the unthinkable today, the cardinal comment sin. We talked of the incident last term, when he once again lost the plot. We discussed the "why" theories... the catalyst of this climactic conflict of character that is my youngest son. And then whilst I brought up and spoke of the content of the post I wrote for Autism Awareness Day (though I cheated and called it an article, lol), of how he had been shunted aside in the early years... she brought up the dreaded comparison of "Oh, we all do that, I did with my kids due to the age difference..."

I did not scream. I did not curse. She meant no harm.

But seriously? Don't ever fucking tell me it is the same thing. Don't ever, ever dare to compare the white bread niceties of your life with the charred black toast of ours.

Fuck.

Seriously.

Or as my youngest son would say... Indubitably.

Still waiting for the thud of my left foot shroud to tell me it has hit.

April 2nd 2012 - World Autism Awareness Day

Today is Monday the 2nd of April 2012. It is World Autism Awareness Day and part of Autism Awareness Month.

I sit here struggling to decide what post of mine to add to the link. What powerful part of our story would be the best bit to add to raise awareness of such a major part of our lives? The Road Less Travelled posts which detail our journey through to a couple of years ago? The Hope posts, which describe the incredibly powerful young man he has become today? The myriad of other posts with the massive highs, the bottomless lows, the fears, the dreams, the days of gripping on for dear life on the autism rollercoaster as it soars and dips?

Boy 1 & Boy 2 2011

So many stories, so many years. But I cannot decide, for deep in my gut there is a knot of anguish so deep it festers hidden.

And this is the story which must be told today.

My mobile phone rang as the cab crossed the bridge, heading into Melbourne. Sitting, laughing with my friend, I glanced at the screen. The school, oh fuck, it is the school. The one rare time I get away... the school. I answer, already in my heart knowing. "I'm sorry to ring, but we have a situation here," my child's teacher shakingly tells me, "He is standing in the rain threatening to kill himself."

Boy 1 & Boy 2 Sept 2011

Oh God, I knew it, I knew I shouldn't have been selfish enough to come.

Boy 1 was formally diagnosed with PDD-NOS under the umbrella of an Autism Spectrum Disorder at age 6. The paed had unofficially told us at age 4, but in the days of over a decade ago funding was not involved, age cut offs were not a concern, official paperwork was not needed until Grade 1. There was no assistance.This was the period of the meltdowns, the obsessions, all the glaring running riot signs, the restricted life, the childhood depression; oh God, THE MELTDOWNS... controlled our lives.

The Boy 1 of younger years. Now in this turmoil of a life lived another boy, Boy 2. A child of amazing beauty, strength, laughter, intelligence (well, really a lot like his brother, but without the complications of being on the spectrum). A child who, at age not quite 3 would circle his brother as he lay screaming on the floor "I want to be dead!" and gleefully join their mother in sniffing and uttering "Ooh - he's starting to smell! The worms are coming... better chuck him onto the compost before the rot really sets in" until said child screaming would giggle and twitch and forget the blackness and surface back into the light.

Boy 2 2003

This was the child, around the same period, who nappy on bum, dummy in mouth, walked up to the older bully in the playground who had just pushed his OLDER brother who was now in tears, shoved the much older, bigger him and told him in no uncertain glaring terms, "You leave my brudder alone or else!"

This is the child who was punished for refusing to leave his Grade 2 midst of major meltdown brother in the unattended forest area of the school. Yes. PUNISHED. For being a loving, loyal brother and doing THEIR FUCKING jobs for them!

Don't worry, we soon corrected it... but how do you undo being told you are naughty, and wrong when you are 6 years old and just trying desperately to help your sibling? No matter what they say later?

I watched this special on A Current Affair a few weeks back. The sister of twin boys on the spectrum spoke of her life. I cried bucketloads for her. And then, on my return from Melbourne "The Black Balloon" was on. The torrential downpour of tears increased hundredfold. The siblings, oh dear Lord, won't someone think of the siblings?



The teacher continued to babble away. He had threatened his best friend too, something along the lines of punching his head in. They needed him to be collected, but what the fuck was I going to do from Melbourne?

He had struggled as he grew older, social niceties were lost, the pressure of his life moulding him into a new, insecure, angry boy. A teacher bullying him, punishing him for not being her accepted norm, the loss of friends as they moved, and then the final straw that changed him completely, the loss of his beloved Nanna, Wise Woman.

He broke. We thought we would lose him. The school stuffed up time and time again (not the teachers, but the system and the disgustingly incompetent passive-aggressive bitch of a barbie-doll principal). Friends dumped him in droves. Little boys don't know how to deal with threats of self-harm.

And of the two that had stuck to him like glue, and supported him when he was slipping under, well, one of them had just had his head threatened to be punched in...

I hung up, looked to my friend, shook my head, and rang my husband.

"You need to pick up Boy 2. He has had a major episode, get there fast." With little explanation I knew he would leap to it. But I wasn't there. My baby needed me and I wasn't THERE.

The siblings. Autism Awareness. The brothers and sisters shunted to the side again and again and again. Not deliberately, but choices have to be made, and when you are dealing with some major emotionally and physically straining meltdowns the drawing little Johnny is trying to show you gets lost as you scream "NOT NOW DARLING!" whilst holding flailing arms and punching fists and kicking legs.

Not. Now. Darling.

My older child has Asperger Syndrome. He is doing well, really, really well. My younger child has a brother with Asperger Syndrome.

He is not doing so well.

World Autism Awareness Day 2012.

Please, add your chosen link below.

In the Lady Garden...

Bah - have I caught you all out again?

Naughty, naughty peoples. Okay... I'll 'fess. I did it deliberately just to get you here.

I have spent most of today, in between the rain showers, in the garden. Ripping out weeds, cutting off branches, culling, tilling, working out my frustrations.

I am pissed. Actually, I am tense and because I am tense I am pissed. And so off to the garden I run, taking out the boundless frustrations on the rubbish which grows where it should not.

Tomorrow I have to have the last of my scans. I know, logically, that it is unlikely to be anything, but we all know that being sensible is not the most obvious of my attributes. Okay, not really one at all. I don't like this sort of stuff, puts me on edge.

And to add to this, a mother at the school has decided I am to be the focus or distraction of her rage because her life sucks. At least, that is the interpretation I am getting from others. All because of a Facebook comment, taken the wrong way (personally), explanations, clarification and apologies all ignored. FAAARRRKKK - I thought I had left primary school a long time ago, but no. This nearly 50 year old woman has absolutely fixated on me being the root of all evil. Personally I think it is an altogether different type of root she needs and it ain't the kind I was ripping out of the garden today! Hasn't been an issue, but this morning I didn't realise I was parking near her... until Boy 2 said: "Mum, what have you done to that woman, she looks like she wants to kill you!" Look across, and yep, gaze of death glaring through my windscreen.

Had to laugh when I explained what had transpired in brief and he responds with "Great, another person who is in dire need of mental health." And they wonder why I say he is my mini me? And no, I didn't go off about her or her issues, merely said she had decided not to talk to me anymore after the FB comment and told him what it was. Because it seriously was not bad, and it was about special needs which he understands the implications of.

And honestly, most other days I would have laughed it all off, but this is not most other days... it is the day before. So I am allowed to overreact! After all, I am nothing if not a  

PS Garden is gutted. Totally.

When Parents Go Feral...

Look, I of all people know there are times you have to advocate for your kid or kids. But I also know there is a time you butt out and let them work things out themselves. Some people DON'T know how to or are incapable of letting it happen.

I am sitting smack bang in a situation created by an interfering parent. We send our kids to school and entrust their welfare to the teachers on a daily basis. They see our kids in a different dynamic to their mammas and pappas, and they also probably understand the class/friend energies better at times too.

My two are off to the Grade 6/7 camp. The kids were allowed to work out there own cabins, their own combinations. We were told to stay out of it (but nicely, I'm just pissed and writing abruptly), and in all honesty, I figured the teachers knew well enough which combos could spell disaster, and the kids themselves would bring it up if it arose.

All good. Then a parent goes in, carries on, changes have to be made and boom:

one spectacularly upset apple cart.

God there are some idiots in this place.

And as I said in my conversation with the teacher, I fully recognise that they are doing their best, it is just a shame someone has to make it all so hard for everyone. And like dominoes the repercussions flow down the line... With my kids smack bang in the middle of it. Which means I now have to be one of those interfering parents and delve in and advocate for them. Not happy Jan.

Weekend Grateful: Boys, LAN Parties and Friends

In case you are wondering I live in a house of geeks. Otherwise known as nerds, or maybe comparable to living in a younger household of Big Bang Theoreticists.

Last night, at our house, we had nine boys with laptops for the second monthly L.A.N. Minecraft party. It was meant to be twelve but a few had last minutes disasters which prevented them attending. So, not only did I have a T.A.R.D.I.S. and the fourth doctor in scarecrow form out front of our long driveway, but also a house full of boys madly sitting building a server world. Local Area Network party. Seriously hilarious.

Geeks I tell ya! GEEKS!

But gorgeous ones, every single one of them.

So very grateful for friends, for all of us.

Funny, I thought it would be a few more years before this...

Snowtime in Queensland... Sorta.

We've just had a hailstorm up here. Twenty minutes of hail thrashing down, surrounding our house, bombarding our yard.

The end result? Snow emulation!

See for yourself:

Well? Close enough, eh?

The Reasons I Am - Happy Mother's Day!

Boy 1 & Boy 2

Boy 2

Boy 2

Boy 1

Boy 1

Brothers - Jan 2011

Motherhood & The Things We Take For Granted - Weekend Grateful

I believe everything happens for a reason.

The painful implosion of a friendship - necessary to give you much needed space to realise how toxic it was in the first place.

The financial struggles of day to day life - required so when these times ease you appreciate it so much more.

The agony of loss - to remember the joy of having them in your life at all.

The fear of a mother. A reminder to make you realise the importance of appreciating what you still have, not drowning in what you have lost.

This Sunday is Mother's Day here in Australia. A day to celebrate the joy of motherhood, to spoil those that deserve it. It should be at least once a month as far as I am concerned. Why? Because we Mums are absolutely fricken awesome! Because we Mums are NEVER off duty. Because we Mums support our children unconditionally and are ourselves the last to be supported in a lot of situations.

This Sunday is my first Mother's Day without my

 Wise Woman. 

You can imagine how I have been feeling about that one.  As the date approached I felt physically ill at the thought of being without her, and asked Big Boy to please arrange for us to be away from here for the day. I could not bear to think of being home on this day without her.

Now, as I said I believe things happen for a reason. I also believe my beautiful mother is somewhere using her strength, persuasiveness and sheer obstinance to continue to look out for me and my family. Things have happened since she left this world, things that have no other explanation than her pulling out the big guns, and I continually feel her love and strength protecting and supporting me.

My Mum. The only person on this earth who could keep me in line, the only one to calm my raging anger, the sane voice of reason when I was threatening dire retribution to any who crossed me, the one who pulled me into line and made me look at things from a more realistic and logical direction.

The centre of our family - October 1996

This week I had a very sick child. My second son. I won't go into details, suffice to say he had the medical profession and his parents totally baffled. And scared. Terrified in fact.

Obviously, after nearly a week, he is on the road to recovery. I would not be posting otherwise.

We still have no idea what this was, but I am so incredibly grateful he is getting better. And somewhere in the back of my mind is the thought that maybe it was a Wise Woman kick up the proverbial... A reminder to make you realise the importance of appreciating what you still have, not drowning in what you have lost.

Thanks Mum. I am now looking forward to tomorrow without any shadows. Well, maybe only a little one, but you wouldn't expect me not to miss you at all, would you...
 
 
This is my Weekend Grateful.




 
 
 

We Haz Fame!

Remember this little guy?

Before he grew all big and tall and confident? Well a funny thing happened on the way to puberty. As an intense part of his younger speech therapy days was daily rhyming and poetry. Now the young Boy 1 used to write beautiful poems and was quite unimpressed with his Madmother trying to make light of it with terms such as poo, bum, and the worst one - fart being used. Anyhoos, he soldiered through and with some one-on-one brainstorming sessions produced some pretty damn good poems. Most of which were lost in the drunk drive fiasco - remember that? No? Before blog time methinks.

Fast forward to the world of today. A writing contest is being touted at the school. Can be old, new, poems or prose. Both boys decide to submit older work. Boy 2's poem is one of the first things I posted when I started my blog. Boy 1's was even older. He wrote it in Grade 1, yes in those intense rhyming days. Now, I was so proud (as was his speechie) that I posted this on an autism poetry website. With copyright (whilst his christian name was on the piece, oh and age = 7, it was my name that appeared after the little circled c) held by moi truly! So, although I luckily had a copy saved in a file on my work pc, I figured save time google. Google is a very useful tool, let me say.



You wanna know what I found?

This poem (without permission I might add) has been used:

• in a brochure for an American university's autism programme
• in a sermon
• in a play
• on a FB page for a support group in Maritius
• in a school website
• in a book - this one gets me as it is a bestseller and the author should have known better. Am following this up as we speak.

Now, the site it was posted originally on is pretty clear about copyright, and my name and contact details were obtainable. Half of me is beaming in pride at my very talented boy, the other half is seriously pissed that people take liberties like this. The university has been great, and I have, with a few conditions, given permission to continue using it. The author - well, that one is pending.

I'm also wondering if the competition judges will accuse him of plagiarism seeing as you can google it and it comes up so many places. Am going to talk to the teacher today to let her know.

And no, I'm not posting it here, I've learnt my lesson on THAT one!

My boy haz famze!

Tonight I am Grateful for:

My son. My second son. The one who was meant to be my easy child (what a terrible burden to subconciously place on a child, I know). Tonight we had a reminder of how fragile he still is at times. I am grateful he was with me. Boy 1 and his father are at the school buddy sleepover. Boy 2 and I were having a well-deserved one on one evening. We should have stayed home. But we didn't. I am so truly grateful he talks to me, opens his heart, puts his life into words. More than that, I am grateful every day to have such a complicated, beautiful, living, breathing blessing in my life.

He was in such a dark place for months last year, I often wondered if we would lose him. Tonight I was taken back to that bleak time, as he was. Anther child at a social function repeatedly called him an idiot. Once upon a time that would not have worried him. After all kids will be kids. But what broke him down was the realisation that these were phrases he once used to a friend, his best friend. In his time of despair he lashed out, driving away those who cared. Logically he knew he had done this but tonight obviously hit home how it ACTUALLY feels to be on the receiving end. How much those words as weapons had injured his friend, and the relationship.

He broke. His words to me were: "He is right, that boy is right, I must be an idiot to have hurt my friend like that." Big revelation to an emotionally frail young man.

And so I AM grateful. Grateful he can see how words hurt, grateful he understands emotions at eleven years of age, grateful he is here.

We left the party, have come home and are about to watch a warped comedy. Together. I will leave you with his words:


"I love tears Mum, they let me know I am still a human." And for that I am very grateful.

Sunday Sessions with Thea - Sickness Sunday

As Thea says:

Sundays I pop two favourite songs onto my blog.

An oldie but a goldie.

And a newbie, fresh from the charts.

Here are my picks for this week.

You can play along by linking up below.

And grab the button on the side bar if you want.

Can't wait to hear your picks.

Happy Sunday!

I have a vey sick little man today. Boy 2 has been hit like a ton of bricks by a virus, he has high temperatures, sore throat and feels miserable. So my Sunday Session today is with the young man I love so much in mind.

It sucks when your child is hurting and you have no mummy magic to make it all go away...

Oldie:



Newie (sort of):
To my darling little boy, feel better soon my sweet.

Blog This Challenge 67: Sepia - I think not?

Blog This

Challenge 67

Share your favourite sepia photo with the world.

Your photo can be of anything, just keep in sepia tones!

Boy 2 is my most colourful child so it is ironic I am entering a sepia photo of him into this challenge. It is one I think captures him in all his glorious quirkiness. Ah, my son, my beautiful second son.

Voting Starts: 10th February

Voting Ends: 17th February

Go here and vote - after all, how could you resist this face?

PSSST... my brand new camera only arrived today and Big Boy has not brought it home yet so I could not use it for this challenge.

Wordless Wednesday 2011

1st day of the 1st month of '11



Coming Attraction: Interview of the Heart

An in depth expose about life as the brother of a boy with Asperger Syndrome.

We ask the hard questions to one who is often overlooked in the Autism Spectrum Disorderdrome, the sibling. Tune in for heartwrenching honesty and simple sincerity. The truth as only a child can tell it.

Bring tissues. And excuse the tearstains on the blog.