Wanted: Roomie for DPCON12



I don't cry pretty...

I am not one of those women who look charmingly disarrayed when upset. I cry ugly, my face goes all blotchy and red, my nose runs, my eyes puff up into little lizard-like slits.

I don't cry quietly... I sob and gasp for breath, I am loud and intrusive, I am not private in my grief.

I don't cry publicly...

I have a toughened facade that no-one sees through. I keep it all held tightly together, wound brittle, hard, impenetratable.

And underneath seethes this raw, open scream wanting to break out. It has stolen my words, this silence, it has taken my voice. I begin to write, words tumbling, stumbling to flow onto this blog but as my fingers touch the keyboard...

They vanish.

And the scream continues to writhe, scrambling with sharpened claws of pain, aching to be freed.

If I let it out will my words come back, or will I vanish into the shrill?

Our name is legion for we are many...

I should be working on my Weekend Grateful or Weekend Rewind link ups. No, actually I should be asleep considering it is just after 3am in the morning, but that is a whole 'nother post.

Instead I am sitting here pondering the sheer magnitude of autism spectrum disorder. Otherwise known as ASD. It is a spectrum for a reason. The incredibly large range of diagnosis and the massive scope of this disorder is, to most, unfathomable. The term Autism Spectrum Disorder is the broad umbrella (at this point in time, until the DSM V comes into play in 2013) which covers such labels as:

• Autism Disorder - this covers what used to be termed classic autism or Kanners autism as well as a variety of behaviours and characteristics. Oh, that's another thing. The terms are constantly changing, as if this world on the spectrum was not confusing enough.
• Asperger's Disorder - otherwise known as Asperger Syndrome. Apparently this is going to vanish *poof* when the DSM-V is introduced. Great. Just great. The condition my son associates with himself, the one we have worked years on becoming an accepted part of his being, the identifying factor that forms a part of his self-belief, identification and confidence is no longer to be recognised. He will just be autistic, fancy that. Or don't. More to the point, DON'T.
• PDD - NOS - Pervasive Development Disorder - Not Otherwise Specified. I call this the limbo one. It is given in many cases in the early days when there is obviously something going on, but it is just not clear what. When help is needed, but the direction of the child's ASD has not become obvious. This is the one we were given in the beginning.

In the old days, when we first began this rollercoaster (around 2002/3) there were two other conditions under this broad cover:

• Rett's Syndrome
• Angelman Syndrome

Both lesser known genetic disorders with very serious and life-long implications. Apparently they no longer come under this ever changing cover.

This line of thought has been triggered by a heart-wrenching article written by a mum I am on several support sites with. The incredibly articulate Kirsty wrote this post which was published on the MammaMia blog.

After reading this, crying for a bit, then thinking on it, I started down memory lane. Our journey is unique to us. Whilst we have travelled a very different path to Kirsty, it has been no less painful, raw. (Refer Road Less Travelled) I think this is where a lot of people make assumptions, that Asperger Syndrome is a lighter sentence. It is not, nor is it a life sentence. It is a part of who he is, and always will be. His struggles are no less heartbreaking than those of others on the spectrum. Our hopes are no less valid. Our pain no less excrutiating at times.

People in my life (real and online) have commented, comparing us to others... you know the "Oh, but look at so and so's situation. You are so much better off than they are, you should be grateful." My answer is and always will be, "Yes, I feel for them. I can offer sympathy, compassion and to some degree, empathy. But it is not my life. It is not my child. It does not make our journey any less difficult, it is does not make the fear, pain and fight we experience any less valid."  Let's face it, EVERY EXPERIENCE of every parent in this complicated world is VALID. It is just that those of parents facing the challenges on the Autism Spectrum resonate far more deeply with me, for they are the battles I have fought, be it to differing degrees.

Our name IS legion, for we are many. It never fails to surprise me, just how many. I talk. A lot. I talk to people I encounter in every part of my life. I talk as much as I blog. And the huge number of people who confide in me that they too have a child, sibling, relative, friend or student on the spectrum... it takes my breath away.

Perhaps this is why when a mother such as Kirsty writes such an honest, powerful, evocative piece, it has a big impact. Read the comments that follow, the multitude of "I hear ya sista"s.

It is not 3am anymore. It is after 9. I can hear my two boys playing together, laughing, arguing, being typical brothers.

Boys 2 & 1 - 2004

I guess this has turned into my Weekend Grateful. Kirsty is right, he is so very easy to love. It is the easy bit. And as I listen to my boys laughter, I am so very grateful for both of them, as unique and quirky and boundary pushing and mind blowing as they are. As Maxabella says... it's all about perspective.

The Rose and the End of The Year of Firsts.

This time a year ago I was sitting in a hospital next to the body of my mother. This time a year ago I was trying to say my final farewell to the woman who made me all I am.

I was wrong. She is not gone, she surrounds me every day.

Today is the end of the year of firsts.

Today I walked outside to see this:

Three months ago I bought this rose, two months ago we planted it. Today it bloomed in perfection.

She is around me and mine... this is merely one of her more blatant reminders to never forget.

I love you Mum.

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...

FYBF - The Scarecrow Edition!

Well, finally getting off my ever expanding arse and joining in to a FYBF again! And I am here to offer evidence of why my blogging has dropped off of late: my life is NUTS!

This weekend is the annual Scarecrow Festival on our little mountain. Yes, once a year we mad mountain people enter competition with each other to see who can create the best scarecrow. I kid you not. Last year our friends amazing effort was torched - which is why we will be bringing ours in at night this year. Due to the circumstances of 2010 we did not enter.
We had entered two years ago.  2009. Didn't win anything, probably because I do not have a creative bone in my body and it was a piss-poor effort.

Albert Scareinstein

But this year we have stepped up and taken it to another level. Boy 1 and Boy 2 are old enough to seriously contribute, and Big Boy was informed early enough of our plans to be able to slot some time in. And


voila'

here you have it:

Docrow Who & T.A.R.D.I.S.

Pretty cool, eh?

We are feeling rather full of ourselves now. Will find out if we won anything on Sunday. But even if we don't we feel like winners for our effort.

Oh, and it has a flashing blue light on top of the T.A.R.D.I.S. It would have had sound effects also but my mp3 player decided to die this morning.


This is my scarecrowy FYBF... so, how's your week been?

Weekend Grateful: Dreams.

We all have dreams, but sometimes those dreams seem to be so far beyond our mortal reach that we stop before we even begin to try and attain them.

http://www.genyrants.com/

And at other times they feel so tangible you feel able to reach out and grasp them with both hands.

Right now I am sitting smack, bang in the midst of the latter camp.

Dreams coming to fruition.

An unbearable lightness of being.

http://www.youwall.com/

A release from all the baggage that was grounding me, wingless. For now my wings are unfurled and ready for flight. My inner self is happy dancing - I confronted one of my misery demons and told her a few home truths. Amazing what speaking out against the vile shadow boxers will do, I think more than anything it was being unable to defend myself that ate at my soul. The final shackles have fallen away, and now I am helping others break those chains of hate to free themselves too! Such a feeling, mere words cannot do it justice.

Image: http://www.bibliotecapleyades.net/sociopolitica/breakingthechain/tobefree.jpg

My boys are doing especially well, academically and socially. When all is good in their world, all is good in mine. Boy 1 has incredible things going on, he is even performing a little feature in the Grade 7 graduation dance - pretty damn schmicko for a boy on the spectrum. There is more, but I cannot spill until we are further down the track, but it could be HUGE for my young man. I will let you in on the details once all is signed, sealed and delivered.


Boy 2 has become a LAN party guru. Each month we have up to 12 boys in our games room, all signed in to one network, creating cities in a game called MINECRAFT. Yes you mine. And build, and forage and till. A world unto itself. The phone rings hot for Boy 2 nowadays. He is thriving in friendship.

We have big changes on the horizon, amazing things are happening. You already know of our change of direction with closing our retail store. December 17th is our last day of storefront trade, though the website will continue until all stock is gone. Our lives are evolving, and I know in my heart Wise Woman is watching, smiling, pushing as forward onto new horizons.

Life is dazzling.

So people, dream big. For nothing is impossible. We are only just finding it all out. This is my weekend grateful.

A Dawning of A New Day...



Sunrise over the mountain 4/10/11



Today is the first day of the rest of my life. Today things are a changing. Today we announce to the world we are closing the doors of our retail store. Ten years we have had this business. A decade of hard work, building relationships, fighting against the odds. It certainly is not the easy, walk in the park so many consumers assume retail is. We have never been rolling in it, nor made the gazillions in profit so many assume us greedy entrepreneurs make.

It may not have made us our fortune, but it has bought us flexibility at a time in our lives it was crucial, it has bought us a family life, and more importantly, it has given Big Boy the chance to be what he could never have done successfully if he had stayed a senior exec... a Dad. And oh, what a Dad he is!

We have seen many others hit the wall, so many have closed their doors and walked away with nothing but debt, bankruptcy and failure.

We have not. In fact, if the GFC had not hit, we would have had this business on the market two years ago. It is a good business, built on honest sweat and effort. But it is time to move on.

Since Wise Woman passed nearly 12 months ago, we have been madly juggling her businesses and ours. Doing nothing well. Something had to give. So rather than hanging on another two or three years waiting for a buyer, we made the difficult choice to close down.

We are lucky. Whilst it carries some debt it is something we can manage. It will cost us financially, but the thing we need the most in our lives is time. Doing nothing properly and running, running, running is not helping anything nor anyone - this is the best solution for OUR family.

A new day, a new era, a new life in so many ways.

Oh, and yesterday I bought my ticket and booked my accommodation - look out Digital Parents Conference 2012... I am on my way! Woot.

R U OK?

My friend, R U OK? You don't seem yourself and you've lost your lovely tigger bounciness of late.

Hey darling, R U OK? I know you always worry, but something feels a little darker around you right now, can I help lighten the skies?

Hi you, R U OK? Stupid question as I can see you are in a pickle. How about you let us all help you out of this? Or let us in to help you out?

After all, that's what friends are for.

All Pooh Bear pictures copyright Disney

I am here. And I really do want to know... R U OK?

The Mother

I wrote this in a note on Facebook, and then decided to share here too. Sorry for the double up for those who are on my FB list. Am also linking for both weekend grateful and FYBF. It's been THAT sort of week.

The mother walked, bent double under her load. On her back were her children, her career, her aging parents, her friends - though who, when and what changed as needed. Her face pale with perspiration, her legs shaking with effort, she put one foot in front of the other, constantly moving forward though sometimes at a snail's pace. Some days her children were dead weights, exhausted, stressed, the pressures of school, social acceptance, conforming wearing them out.
Other days they were as light as feathers, and she needed to tie a string from her heart to theirs so they did not float away with happiness and laughter. And on the terrible, black, heavy days when she thought her back would break, the load would suddenly lighten and the pain lessen and she would look to her side where she had not realised her loving partner or a dear friend had appeared, and they would say: "Hey, I'm here. Do not worry, let me carry some of it for a while whilst you learn to breathe freely again."

Thank you my friends and husband for allowing me to exhale.

Ah Yes, The Autism Hasn't Miraculously Vanished You Know...

I sing his praises so much you could be forgiven in thinking he was out of the spectrum, but of course he is not. He is doing well, so very well BUT it is incredibly frustrating when the fact he has Asperger Syndrome, will ALWAYS have Asperger Syndrome (AS), seems to be forgotten. Or ignored.

Big Boy & Boy 1 - Byron Bay
Copyright Madmother

The pressure at the moment is immense. We are coming up to the last week of third term and the work is snowballing. Why they do this is beyond me. Even Boy 2, who does the same work as Boy 1 though is in the grade below, Grade 6 (in a composite 6/7), is finding it terribly stressful. Tears of frustration are becoming the norm in this house.

Last weekend we had meltdowns, trigger tempers, tears. This week has been much the same. And it could have been avoided with a little forethought.

Boy 1 had a week off, the week before last. The whole family went down with some nasty virus, but he was hit the hardest. The school knew, because it was from school I picked him up on the Monday, green as the grass.  So he missed a week.

On his return the following week this is what he was hit with:

• Poster for his marketing/technology poster due on the Wednesday, he found out Monday afternoon. Given extension to Friday.
• Rough draft of debate due Friday - AND they put him in as THIRD speaker for the negative! WTF? Who in there right mind would do this to a child on the spectrum? Debating is hard enough, but THIRD SPEAKER? First speaker, maybe he would cope, but never in the think on your feet last rebuttal final speaker position...
• Science experiment parachute construction due Wednesday.
• Thursday off school at college orientation day.
• Assessments and class withdrawal by education department OT and also another session of assessment by physio.
• LOTE test on Friday sprung on him as he missed it the previous Friday.

Yes, I picked up a boy in tears on Friday afternoon having missed first break and part of second (thus not eating as much as he usually does - which is a part of his routine which keeps him settled).


Boy 1 Sept 2011
Copyright Madmother

 I just cannot comprehend how a school could not see this was setting him up to FAIL. There is no way possible for us to have managed or prevented such, and to be honest I really felt like letting them reap what they have sown for I feel they forget he is still a young man on the spectrum. Yes, he is amazing and doing so very well this year - so what? You want to bring him back down? You want to pull all the struggles back into the light?

And they wonder why I get frustrated with the system. The bloody system doesn't work!

Note: Big Boy and I went in first thing Monday morning. Big Boy was very proud of me for no teacher was harmed in the making of this post. Yes, I kept my cool. On the outside.

Write on Wednesday - The Great One Liner...

I'm back! Life took over for a while but am finally jumping back on board Write On Wednesdays.






The Write On Wednesday Rules: Get creative with the writing exercises - there isn't a right or wrong. Please do try to visit the other members of Write On Wednesdays and leave a comment. You can grab the button for Write On Wednesdays from IPP sidebar.
 Write On Wednesdays Exercise 13 - A Great One Liner...
This week you need to come up with one good line to describe a part of your day. It can be 'real life' or fiction. But it must tell us 'who did what'. It has to be an amazing line, like a tiny little paper plane that must travel a big distance (figuratively speaking) with only a few folds ... Every word in that line must earn its place, or be cut as excess baggage. Let's get thinking about each sentence as though every word counts, like working one group of muscles to show how much weight they can carry.

Mine:

Was she the only one present who was aware this elephant in the room lent an unsurpassed new meaning to the term mammoth?

Go for it, rip it to shreds and thrust some feedback at me!
 
Off to read the others so far.
 

I want to be just like Dad...

Happy Fathers Day 2011!