The Monster

Written many moons ago, in the early days when things were dark. After reading some posts on a parenting site I thought it may be time to post it again.

The Monster

I had a little boy once

Who truly was so dear

He cuddled and blew raspberries

If anyone was near

His eyes were shining amber

His smile, oh so bright

And if you had him in your arms

He snuggled in so tight

But then a horrid monster

Did steal him right away

And never sent him back

Not since that very day

Put in his place a new boy

So fearful and so scared

Eyes all dim and worried

Loud noises in his head

He bangs his head and screams a lot

Will punch and yell and shout

And if you try to hold him

He always lashes out

The memory of my first boy

Still comes in dark of night

When tears they overcome me

And I lose all will to fight

But I will find this monster

I search with love all day

And slowly bring my boy back

This monster, it will pay

Oh monster known as Autism

You'll never win this fight

I may be battle weary

But a mother's love shines bright.

 

 

 

 2006

Swings and Roundabouts

I have recently added a couple of new finds to my blog roll. I seem to go in cycles: you know... Full tilt, riding that white pony up and down on the ASD roundabout, researching, reading, being proactive; to falling in a denial heap in the silver coach section, sitting on the bench unable to move, discuss or even mention *shudder* Asperger Syndrome. It is quickly approaching a decade of being on this ride, and even the strongest of us end up with motion sickness after this long. Round and round, up and down, faster, slower, spinning ground...

Ah, but back to my finds. I follow a wonderfully informative, helpful blog,

 The Thinking Person's Guide To Autism

and it is through this blog and its myriad of contributors that I find many of my new haunts. It is via a wonderful link to an open letter that I have stumbled onto Pia's blog:

the crack and the light . She writes so eloquantly of the emotions and battles we parents of the special ones face. I am reminded of how the fire can burn from a mother's love and quest for answers and help. Memories of the fight we have waged for ten long years are re-ignited. Don't get me wrong, I have not forgotten the campaign nor abandoned my role as his advocate. It is just sometimes the heat is not as intense, and other struggles take priority. Sometimes I cannot even read of another's ASD journey, sometimes I am tired.

Sometimes it is good to be reminded of how it was. Sometimes it is necessary for us to now see how it is today. Go, have a read, it is pretty powerful stuff.

Revelations 101

It has been an interesting week to say the least. Had a lovely dinner out with a few of the girls which culminated in a conversation which I found intriguing at best, puzzling at worst. This lovely lady is someone I have known for a few years, but not well. We cross paths on a regular basis but have only really socialised a couple of times. You know, someone you know but don't know well... Somehow the chat swung around to her impression of me. All the usual stuff... strong, outspoken, a fighter/advocate/zealot... but then she throws in: wait for it,

insecure?

Now I must admit this one puzzled me. Don't get me wrong, I am as flawed as the next person, and yes have my vulnerabilities and weak spots, but insecure? To me this represents self-doubt, a lack of confidence, uncertainty... not attributes I see as a big part of my character. Hell, I screw up - monumentally sometimes - but I usually acknowledge the stuff ups and will apologise when in the wrong. Hmmm, insecure, nope don't see it. Luckily the other couple of ladies know me very well, and basically disagreed with her perception of moi, so at least I am sure it is not something I am missing seeing within myself.

Then we went with friends to our little rural show the next day. Saw a lot of locals, managed to briefly catch up with a lot of friends I haven't had time to say boo to of late, and touched base quickly with a dear mate and her other half who were working a stall. Was dang cold so we gave up the idea of hovering for the fireworks and instead opted for some steaks, a roaring fire, good company and fine wine.

Big Boy later brings up a conversation he had with said dear friend at the show. Apparently she is confused about my coping mechanisms with all the crap that has hit our family recently. Confessed she thought I would be wanting to unload, talk, vent on a regular basis. That I would need my girlfriends to debrief with.

To be honest I couldn't think of anything worse. Is it just me? Am I the only woman in creation who would prefer to deal with the situation, get on with it, and then try to forget about it for a while? Last thing I want to do is re-hash the whole tiresome debacle again and again. I am blessed in my partner, and as he is a part of the whole thing isn't it normal that he and I would discuss the issues as they arise, then put them to bed?

I have no choice but to go over events following the professional complaints process, maybe that is why I do not have a need to discuss them with mates? Far better to chill with a glass of Marlborough white watching trash TV than to be treading water in a sea of emotion constantly. Sorry, just not my style to wallow. Well, most days anyway.

Some days I wonder just how well people really know me...

FYBF - *Meh*

Mediocre. Yep, that's what I said, mediocre. It is how I am feeling at the moment. Guess it is due to the adrenal overload I seem to run on nowadays, flying here there, spreading myself too thin, sleeping inadequately. So my FlogYo Blog Friday link is as stated. A *MEH* post.

Blah, blah, bleurgh, blah...

No-one seems to be a coming in anymore anyhows. Ho-hum.

Off to eat worms in the corner.

To The Writers Out There

How do you write if you have no emotional reserves? Even posting on this blog holds little interest for me, let alone undertaking the work I need to be doing for my writing course.

I am caught up with life commitments, but know this is a reality others still produce work in. So, how do you do it? What helps you forge on through?

How do I break from this silence?

The Dangers of the Internet

I am fuming. Ropable even. A stupid fool on the interweb has taken to posting my private information on sites I do not want it on. She is a passive aggressive fruitloop who takes pleasure in playing sick little mind games online. Now, as most of you know, I have had enough of this sort of behaviour in my real life from two nutters once known as friends. As one in particular has been stupid enough to leave a glaringly obvious trail the last thing I need or want is for her to be able to track me on sites where I wish to remain faceless.

But this stupid fool does not think, nor would she care, it would not cross her tiny little self-focused mind that what is a game to her may impact on my family in reality. Oh no, she'll accuse me of being a drama queen and exaggerating the impact of such actions. Already she has claimed that friends have told her I am like this, that so-called people who know me claim... Well, enough to say that I did not believe her, but now am questioning the people I thought I knew well enough to dispel such two-faced ideas.

It is sad that there is such evil in the world, that someone takes great pleasure in inflicting pain on someone they do not even know.

I am so angry, but am taking steps to cull this presence in any way shape or form. You'd think people would have the brains to know if I wanted my name out there on certain sites, wouldn't I put it there myself? Huh?

Lord, save me from fools and foul bitches.

A Brief Hello...

As the dramas continue. I have never had to fight a system the way I have recently. Every time I set foot in that place another drama has unfolded. I am too tired to go into detail, I will another day I promise. Suffice to say today was my first not going down to the hospital (1 hour each way), other than one other day earlier last week. Sadly, it was spent in total exhaustion due to someone holding what sounded like a massive Rave party ALL night continuing until 9am this morning. Thank goodness we had already planned not to visit, and Wise Woman was perfectly comfortable with us not attending today because I do not think we could have.

No writing, not one word. All my enthusiasm and creativity has dried up as my reserves have been usurped by the battles.

And of course, I have been focused on Boy 2 with his sadness and despair. My little man who is wise beyond his years, sometimes too wise. It is hard to have an such old head when you are only eleven.

That's it for me for now. Hopefully life will allow me to come back soon.

The Black Panther.

I have a panther, a sleek, black panther. It is not a black dog, oh no. I also have a black dog that slinks into my life, tail between its woe-is-me, quivering, shaky legs. It whimpers and whines, pitifully pawing until it draws me down to the floor to sit in an empathetic haze of misery for hours, days or even weeks. 

No, this is a creature of far greater ferocity. Sometimes it lies sleeping, content to rest camouflaged by the shadows of life.

 

Until injustice, discrimination, or the pure evil which seeps from the internally putrid will awaken it from its slumber with an almighty roar. Rousing it from a supine sprawl to stir, wanting, craving to pounce. Yes, my midnight shadow is an animal of black fury, justice and retribution. It is full of fire and fight, ferociously fierce in its defence of all those beloved in my heart. It leaps with rippling rage into my head from the slightest of provocation, willing me to release it to tear, mame, and shred with powerful, unforgiving, dark, dripping jaws.

I am forced to hold the leash tight, restraining my animal lest it do irreparable damage, keep it caged until all other options are depleted. And then, only then do I unclip the collar and finally permit those who transgress to feel the hot panther breath enveloping them as they face the big cat in full attack.

When Lori wrote of the battle to break with her black dog it struck home, and roused me to post of my dark creature. For whilst her black dog, like so many, is full of pain and bleakness, my midnight brute resonates with wrath and suppressed violence. Held in check by small, slender bars of logic, attempting to contain this living instrument of restitution.

Those held locked in my black panther's dark, steady gaze need to be afraid. Be very afraid.

How Much Can One System Screw Up?

I mean, honestly! Wise Woman has been in this private hospital for eight days. So far we have had the incidents mentioned in the last two blog entries, plus other minor ones such as constantly coming in the middle of the night to change her incontinence pad. Ah, she is not and never has been incontinent AS WE TOLD YOU EVERY DAY THIS WEEK, AND AS HER NOTES STATE!

But by far the biggest fault has been the physical damage caused by their arrogance and inability to listen.

Yesterday she was transferred to the rehabilitation unit. I arrived about thirty minutes later to find her in a shared room. Now, this is a woman who is obsessively private and not really social. She loves her own company and peace and quiet, even more so when she is in pain. So, being the Madmother, I go in to bat and have her in a single room five minutes later. First hurdle down. I then go through and REPEAT all I had informed the other ward and staff of. Repeated myself, pushed the vital points.

At 1pm I have to leave for 2 hours (rest time). I return at 3pm to find her room in uproar. This ignorant, arrogant, old enough to know better little shit of a physiotherapist forced her to lie flat on her back (impossible at the best of times, excrutiating now) and when she could not lift her legs off the bed he had a nurse yank them skyward. I walked in around ten minutes later to hear her telling them she had to go home NOW. God, I am still shaking in outrage and anger 24 hours later.

He hurt her, really hurt her. She is so much worse than she was on admission. I brought her here to heal, not be injured further. You can guess how much wrath fell on his and every staff member's head within calling distance, and yes then I called the legal team. I think the threat was dismissed when I told this stupid fool and his co-horts that this is the path I would take. You should have seen the faces drop as I used call connect to be put through, and even more so when they saw I was put straight through to this well-known litigator. And then the looks of horror and fear as I dictated the latest offence and re-iturated the previous ones. Arrrrgggggghhhhhh - IT SHOULD NEVER COME TO THIS! What happens to those without a Madmother daughter to kick arse? I am so, so angry.

And so disappointed that this is the best of a bad lot when it comes to the aged in hospitals. We are giving it the weekend, the physio has been told by the head doctor to stay away. She is now only to be given gentle walking exercise to keep her mobile. There are two massive signs in her room stating: "Do not assist unless requested by patient and THEN only following her detailed instructions."

If she wishes I will bring her home Monday. We will organise private nurses and I will scare the fuck out of them with detailed instructions BEFORE they go near her. Her carers are ready and willing to step back in at the drop of a hat. We can and will do this if she wants.

A month ago, this was my happy, content, secure mother:

This is my scared, in pain, frail mother today:

Can you see how light in her eyes is nearly extinguished? By hell, if they have broken her fighting spirit I will kill each and every one of them who has contributed to this farce. I am just crazy enough to do it too.

To Those of You Still Following

And not on my Facebook, this was my status update last night:

Soooo, because I *requested* nursing staff listened to my totally mentally competent mother instead of adversely affecting her physical state YOU, the one who ignored her the night before and insisted on rolling, sliding and injuring her EVEN whilst she begged you not to do it, decided to tell her you would NOT help her at all. Even when she asked for your assistance in a very unpleasant situation?

Well, I hope you are happy. I hope your little power play on a frail 90 year old woman felt good because her MADMOTHER of a daughter has now written a formal complaint. Oh, and those lawyers I mentioned after the first incident? They now have copy of said complaint and are following it through for me. Do not mess with the weak because you never know who stands behind them.



BITCH...

You stupid, stupid woman. Karma may not bite you on the arse but Madmother will.