Monday, 9 July 2018

Being a Carer under NDIS

Until last week I had a face to face support worker meeting over coffee. It was a small respite where I could share the frustrations of dealing with systems, supports and agencies. Then I received an email ...


"My Team Leader has directed that I am not allowed to travel to see Carers. This means that I can not meet with you face to face unless you are willing to drive to ..." the office 30km away.


I was gutted. I allowed myself to sit with this bombshell for a few hours, then mustering a gentle acceptance I replied:

"Dear PrimarySupportWorker

Travelling to your office, whilst fighting for this NDIS, which is making DisabledPensioner more and more symptomatic, is not feasible.

I kinda knew this would come about and we talked about it, if you remember, about supports getting thin on the ground. I am grateful to be given the heads up, which is more than I have been afforded before.

It saddens me, but it is what it is, and it will be whittled away further sometime down the track.

Respite has become a dirty word …

Kind regards ..."


My support worker responded kindly and I knew she was not happy about this change in her ability to provide supports as was her previous mode, but still it sat with me ill that this had come to pass. I knew I had to put forward my feelings at this time, and after allowing a day to stew on the mode of my more fulsome response and to do justice to what I felt was another slight to which Carers, and those in their care, are heir to.

"Dear PrimarySupportWorker

I am done. Over and Over I get promises of support only to have it withdrawn. PHaMs, One Door, Just Better Care, Ability Links, ADHC, Carers ACT, NDIS … it doesn’t matter how much I rely on it, or look forward to it, or struggle to make it, me being me. I will not allow myself to be set up for one more let down.

Please do share this with whomever you would like, as will I, paraphrased and adjusted for anonymity, because there is now one more carer barely making it, who cares for 3 with disabilities and mental health conditions, and who is herself a mental health consumer, who is going without.

I was promised support, via PHaMs, through the NDIS access process for ALL FOUR OF US, but no, only one of us made it, and that was only through my own grit, not because I had support. Two years of this farcical process is going to leave me broken, more broken, but that’s ok, apparently.

ADHC Started me off with their put down that my youngest was “1 IQ point not retarded enough for supports”

There was also Just Better Care that told a disabled pensioner in my care that “if he was going to insist on having a complex medical condition then he should just F#*K off back to Sydney where those sort of things are catered to”

Then we have the whole NDIS decision that Epilepsy is a medical condition and not a disability, so that my disabled pensioner and I, his carer, are locked in a battle with their Senior Lawyer at the Administrative Appeals Tribunal to get some supports.

We also have Ability Links, who in their font of benevolence, have decided that asking for a letter stating when supports were accessed and the type of supports given is tantamount to defrauding the NDIS and have refused to comply with even this basic request.

Let’s not forget Carers ACT who promised, and got a quote for, some home care services, then proceeded to bill me and sent statements and reminders month after month with no service rendered. Even with me informing them that no service was rendered each time a financial document arrived in my in box.

PHaMs became One Door and I was dropped like a stone. No one contacted me, just neglect. Now this?

It was said that “No one will be worse off under the NDIS. Even if the new disability services might be different; CYP accessing the NDIS should be able FACT to achieve the same or similar outcomes”
https://www.facs.nsw.gov.au/__data/assets/file/0007/436678/Department-of-Family-and-Community_NDIS-Myth-Busters.pdf

This was, is, and ever will be, now that services are being whittled down to inaccessible, a crock, a mockery of all that carers go through and have to put up with in a compassionless, dollar centric farce of a system. Are we not worth a little more consideration?
http://www.carersaustralia.com.au/about-carers/statistics/

I will soldier on, of course I will, it is what carers do … until, of course, they burn out, self-harm or die of despair at their own hand. The statistic will bear out my statements so I am unafraid of sounding too dramatic, or like some hysterical scaremonger. The statistics of our surviving our lot is frightening, but that is ok, probably because we do it out of love, our value is negligible.
https://www.australianageingagenda.com.au/2014/03/05/suicide-risk-among-carers-highlighted/

I hope you can appreciate that I have given this email much thought and refused to reply in a the heat of initial disappointment, and that the inner rage is not directed at you PrimarySupportWorker, but I have long railed against those that would diminish me by abuse or neglect, but neglect is still a wound, a wound that is compounded every time neglect takes place.
I will not be wounded any more. If I have to go it alone, I will, but I can choose to not be neglected. I can choose to not allow the line-up of people and services gasping to neglect myself and my family as they grasp at every holy dollar.

I am done. I can’t begin to iterate my despair or emphasise what that one coffee date a month meant to me, the carnival is over.

It was such a small thing to look forward to … wasn’t it? ..."


So that's it. We navigate the NDIS, succeed or fail. We try to fathom the intricacies of legislation, bureaucratic agenda, wilful misunderstanding of documents and the dogmatic insistence on particular words and phrases, regardless of meaning or intent. We work, we care and we hurt and we neglect our own welfare for the sake of those who trust in our compassion and consideration.

What do we get? Neglect and a constant whittling down of even basic supports. We are not considered by NDIS funding at all, so we are left to shift for ourselves, left with considerably more work because, more often than not, it is we who have to navigate the NDIS for those in our care.

Perhaps we should just line up for a slap in the face periodically ... it might hurt less than this.

Thursday, 28 June 2018

My Life as an Impostor


Most of what I have read about Impostor Syndrome refers to workplace performance. I was effected in my work life, but more and more I have this encroaching on just about every aspect of my life.

I learned to drive when I was 46. I had tried throughout my adult life, but each attempt had ended in disaster. My first attempt to learn to drive was when I turned 17 as is the usual for young soon to be adults. I did not feel like my ambition was fully supported and feed back from my parents was that I was not to be encouraged. After 20 paid lessons with an instructor I was told "Don't worry 'bout it luv, ya useless!"

At 21 I tried again. An old manual car and with an impatient husband. First lesson took me to a fairly major arterial suburban road. Impatient instructions such as "put it into third! put it into third! cant you hear the engine? THIRD!" lead me to such anxiety straits I could barely function. The elderly car did not help when  my panicked attempt to go into third saw the gear stick come away in my hand at which point I gave it to my husband crying "there is no third", stopping the car and never getting into a driver's seat until my 44th year.

When my marriage ended it became apparent I had no one to support my mobility and that the time needed to invest in public transport as a single parent of 3 boys working full time was excessive. I once more got a learner's permit and began to pay for lessens, now with the added burden of a crushing anxiety disorder and PTSD. I could not seem to get through roundabouts without a panic attack and even an automatic transmission was too daunting for me and I despaired of ever being able to direct my own motor ambitions or driving my own destiny.

A couple of years later it became needful to move away from the suburbs to a coastal regional location. This, from a logistics point, raised many issues, one being access to specialist medical care. The idea that I should learn to drive once more raised its unsettling head. I engaged an instructor, made him aware of my mental health issues, and proceeded to learn, one meltdown at a time, how to drive.

I bought a car, my first car. Not a small, economical, automatic wee model like I have been learning on ... NO! A great, old, 4 wheel drive, manual beast of a vehicle, and so had to relearn how to wrangle this monster and still pass the test.

It took three attempts to pass the test and get my license, but I did it. Sweat, shakes, sobs and tears, but I got it.

I was told driving got easier and that soon I would wonder why I felt so unequal to the task, a task that just about anyone else could do without even thinking about it.

5 years later and I still feel like I am going to be found out. Someone is going to pay attention and notice that I should not be driving. I can't drive to a major city, 2 or 5 hours away, with out succumbing to tears, giving in to fears, fears that including injuring my own loved ones.

I hate that I cannot feel safe or capable doing something everyone else feels is so simple. I have to cling so hard to lists of what to do and how to do it that simple things will undo me and leave me flustered and on the edge of panic. The sound of a horn or a siren creates so much panic and paranoia that I am so tense and rigid I can barely breath.

I find myself holding my breath.

I feeling that I am going to be caught, dragged out of the car and punished for the audacity that I even thought I could drive, that I shouldn't be there with people's lives in my hands, being responsible for obeying laws and not harming and maiming people. I constantly see me in the middle of chaos, the cause of injury and disaster.

I become consumed by a sense of guilt and shame that people will see me being a fraud who thinks she can drive.

This is my life as an Imposter, waiting for the gavel to fall for all to know and laugh and point ... how did she ever think she could drive? ... wasn't she listening when she was told how useless she was?

Yes. Yes she was ... and that, dear readers, is the problem. I heard those words, at the tender age of 17, and learned, hard etched into my soul, how useless I was. A lesson learned and made more indelible within a framework of discouraging words and actions by loved ones surrounding me, not intentional, but permanent in it's harm.

I drive. I will continue to drive and sometimes I even get to a place where I enjoy the process, the challenge of driving well. This complex set of feelings is not constant, sometimes it is in the background and sometimes it's in my face. Some days it is harder than others. People will tell me I am a good driver, but a part of me will always feel that I will be caught out and shown up for the Impostor I am.


Post edit: I never meant this to be a story of how sad I am, but a story of triumph over my own demons. I can drive, I do drive, I have driven through cities and across states, I have crossed bridges and beaches. My mental illness does not stop me, it is just a fact of my life. I am here as a qualified driver due to the support of those around me, the skills of those who taught me and the encouragements I have experienced to not let these demons win. My abilities are not less because I suffer for them, they are more because I have to work harder for them.
This is a shout out!

I CAN!




Saturday, 13 May 2017

The Battle to Function with Anxiety as told to my ASD son

My beautiful youngest son, Master14, is on the Autism Spectrum so I am often having to explain the world in terms he can understand. On this sunny day my Master14 and I were out and about getting things done and running errands together. On the way home on a small coastal “major” road I began to have an anxiety attack so I took a detour into a park with sweeping bay views and we talked.

Master14: you ok mum?

AnxietyMum: Mummy’s just having a moment sweetheart. Let’s look at the water for a while and see if I calm down.

Master14: What’s it like?

AnxietyMum: It’s like tight metal bands around my chest making breathing really hard.
It’s tears hiding just behind my eyes burning to escape.
It’s my heart racing and feeling like it wants to escape my chest.
It’s my limbs being heavy, cold, numb and unresponsive.
It’s a bone deep shudder that just wont stop.
It’s a fear so critical I need to get away, but I don’t know what from.
It’s an icy creepy feeling up my back.
It’s hairs all over my body standing up like goose bumps.
It’s a sweaty, sticky, gross, clammy feeling in my hands, my hair and my feet.
It’s a feeling of dread like something really bad is just about to happen, but I don’t know what.

Master14: Can you really feel all that?

AnxietyMum: Yes baby I can.

Master14: What makes it happen to you?

AnxietyMum: That’s a very good question … It’s like my brain tells me stories, lots of stories, of all the things that could go wrong. The stories are all very possible so they worry me, especially when I drive, because horrible things can always happen on the road.

Master14: you can’t stop the stories?

AnxietyMum: I try very hard to not pay attention to them, but …

Master14: They are like a song stuck in your head?

AnxietyMum: Sort of …
When I am driving it’s like I have port holes, little boat windows, of reality in my windscreen and mirrors, but all around that reality are images, flashes, of horrible possibility trying to make me pay attention.

Master14: What sort of images?

AnxietyMum: a dog running into the road, a child, a ball, a stroller.
I see an insect crashing into the windscreen guts all over the place, or a pelican poo, or a bird.
I see branches falling off trees, rocks flying at me, pot holes and bridges collapsing.
I see your face bloodied, your arms broken, blood everywhere.

Master14: none of that happened, none of it was real …

AnxietyMum: I know darling. I know it the whole time, but the stress of it, all of it, makes my body react to it even as if it were real. Adrenalin gets released into my blood stream and I can’t help feeling all the things that real disaster creates in a body.

Master14: are you ok now?

AnxietyMum: I’m much better thank you

Master14: Why do you thank me?

AnxietyMum: Because focusing on your questions gave my brain something to do other than panic.

Master14: I helped you?

AnxietyMum: More than you could possibly imagine.

Master14: Can we go home now?

AnxietyMum: Absolutely … that’s just where I want to be.

*quiet moment as we get back on the road*

Master14: I feel like that sometimes …

AnxietyMum: You know any time you do you can talk to me about it.

Master14: Because you understand.

AnxietyMum: Boy do I ever!

I don’t think any mother wants to have to explain why they are frail or scared or distressed. I have always tried to keep open dialogues with my children, but I am always challenged to explain things to my youngest in terms HE can relate to. I also managed to gave him a name for the way he sometimes feels. We are closer for it and I have a better understanding of my amazing wee man and myself.

Friday, 3 February 2017

Prisoner of The Season

I have to admit to a really large dose of seasonal "bah humbug". I don't enjoy the marketing frenzy of retailers that begins even before the ridiculousness of Halloween is over and I don't enjoy the all holds barred of other people's determination to enjoy their idea of festivity even in the face of the discomfort and detriment of others.


Merriment should not impact on the health and welfare of others in the community and when objection is raised for very valid reasons it seems ill fitting to direct invective at the beleaguered and distressed.

Case in Point?

Take the silent and oft unnoticed, but debilitating neurological disorder epilepsy for instance. How many in the community would even consider the effect of flashing lights for most of the night on a sufferer? The lack of sleep entailed in traffic? loud laughter? raucous exclamations? screaming children? How many people are aware that flashing lights and lack of sleep can be key precursors to seizure activity? how many care?

This is not my usual foodcentric mode, but my foodcentricity all began with a desire to find a place of wellness and fulfillment, not just for myself, but for my small family each with variety of silent, invisible illness and so the plight of those who also suffer such ills is not lost on me and those who may know me would know I care so very deeply.

What am I trying to say?

Well ..... Don't malign those who take less enjoyment in the frivolity and excess of the season than you as they may well have a very good reason.

Take into consideration that your flashy over the top displays of lack of consideration can in fact be detrimental to others.

Take with you, if you are more inclined to more sedate and considerate modes of celebration, our thanks because even though you may not realise it those not of your ilk keep us and many like us imprisoned in our homes after dark .... unable to take advantage of any evening occupations and enjoyments.

If, in your estimation, I sound bitter and at variance to the season of the Holy Dollar and that doesn't suit whatever you keep under your silly red hat then I'm afraid that's just too bad. Catering to the chronically ME-centric is not in my best interests ....

Monday, 4 April 2016

5 Things ...


You Don’t Expect Autism to Teach You




Parenthood doesn’t come with a user manual. Life itself doesn’t come with a tourist guide. Each of us harbour expectations when we hold that separate piece of ourselves nestled beneath our breast growing towards it’s own identity.

Here are my lessons at the school of Autism where my teacher is my youngest son. A champion at meeting his own challenges.


  

  1.  Love is not something he keeps at arm’s length because he doesn’t love.

    He loves with too much heart. Love is just as much a hypersensitivity issue as too loud a rain fall or too much crowding. Living in a world where meeting an eye means connecting, caring, accepting a new heart into your world is a world where he has to be cautious in making that commitment.
  2.  Some things are scary beyond belief.

    I don’t have to understand why, just that it is so. Being scared of food, of textures in his mouth and of change made me face all sorts of challenges with him. We weathered the early years to 4 ½ where only formula was his go to. Then the single white food with no flavour. We progressed to 2 single foods in separate bowls until one day I was allowed to put meat balls on top of spaghetti …. No sauce! These days we both delight in his love of seafood, his desire to eat his way through the local seafood catch varieties, his occasional junior chef moments and his willingness, sometimes reluctant, to try …. At least try.
  3.  Battles are won with kindness and compassion.

    These battles are not with the child, but with systems, norms, expectation and standardisations. We push against stereotypes and misunderstandings. Together he and I work to break down, not only his personal protective walls, but the walls society builds with what may be considered normal, but to us is just a different kind of normal.
  4. Often it is the tiniest bit of progress that is the greatest cause for celebration.

    When basic concepts so many of us take for granted are finally grasped with hard work and diligence I can’t help but find myself internally doing a joyous jig. Learning to read at age 10? How can I adequately express that joy?
  5. Society is a mish mash.

    An agglomerate of exceptions, rules without reason and traditions based on long lost and antiquated conventions. Learning to see these from the eyes of a virtual stranger in a strange land allows me to question societal expectations, find reasons that can be understood and equip myself with language that explains it all to a wondering mind, a brave, intelligent, inquiring mind that sits on the edges wanting to join in, but not quite understanding the rules that engage us all every day.



I am a mum, a partner, a carer, a self-sufficiency nut, a forager, a locavore and an all-round loony tune. My usual blog mode is all about food, but the reasons for this are entrenched initially in my food based therapy for my son. My Blog is dedicated to him and the places I have had to take myself to meet his challenges and mine.

Read more about our food adventures here: Locavore Intentions

Friday, 11 March 2016

Epilepsy in the Spotlight

I have noticed over the years that I have been an Epilepsy carer that awareness of this oft debilitating neurological disorder is scant in the community. Some sufferers can get lucky and find a medication that suits them with few side effects and great benefit, but there is the chance that side effects are just as debilitating as the condition itself or that little benefit is to be had from front line medication options.

Comments surrounding the depth of knowledge in the community about aspects of epilepsy show that little education about it reaches the public and the broad scale of symptoms, syndromes and stigmas that sufferers have to face are just not known or understood.

Raising awareness can only benefit the community, increase the knowledge of how to react and treat a seizure and you have a win win situation. Reducing fear of seizure activity can only lead to a better place for everyone to live especially those with seizure disorders.

To that end Epilepsy Action Australia has created a photo competition called Picture me Purple with purple being the colour of epilepsy awareness as Purple Day approaches on 26 March.

Dabbling, as I do, in photography I have launched myself with 10 images featuring, or with enhanced, purple. I have decided to share these images with you and introduce some more of what I do. The caption at the bottom of each photo will take you to the competition voting page for that image.

pansies

An image taken in the back yard of Tim and Di's on our Christmas tour of Tasmania. A stunning summer sky as backdrop, who could ask for more?



through the purple is hope




Whilst in Tasmania a trip to the Royal Botanical Gardens, Hobart is a must and there I snapped this hopeful image. One of my favourites.




Epilepsy: sometimes we just bumble along


The Royal Botanical Gardens, Hobart also gave me this photographic opportunity of those delightful bumble bees that were so prevalent while we were there. The sheer improbability of their flight captured my idea of against all odds that we sometimes have to just bumble through.


With my next image I started playing with some software that came with my camera and I tried to capture the post ictal state that messes with a sufferer's recovery. The need to sleep, muscle aches, joint pain, confusion, headache, light sensitivity as well as the auras that jar and collide with reality.
Post Ictal: the colours of recovery



A beautiful spot with a rigorous walk to Sleepy Bay, Tasmania lent me this image to hopefully give an idea of life with seizures. It's not this pretty, it's jarring, uncomfortable, disturbing and unkind.

Purple chive


Slightly shifted into more of a purple mode these society chive flowers find themselves, not just on our menu, but onto my edit software for a chance of fame. Fresh from my garden I just couldn't resist these showy little blossoms.


even the king getting into the purple .. almost

This cheeky fellow dropped in for a visit on afternoon and couldn't help posing. With a bit of photo editing he was glammed up for Purple Day.

These curious king parrots are regular visitors and have personality to spare.

sage


Another of my herbaceous garden stars with lots of purple to put on show. A favourite in the kitchen too, let's hear it for Sage!

Buds of Hope
We have to hold onto hope. Hope for more effective treatments options low on drastic side effects, for cures and for continued research breakthroughs



calendula
Another herbaceous garden favourite is calendula with it's soothing properties and festive appeal in salads. shifted into a bit of artistic purple this has to be one of my favourite edited images to date.









Purple in the evening
Last but not least is always the end of the day. Time to put away tools and survey our surroundings. Here I celebrate all the good that's been done and all the promise of tomorrow.


Friday, 4 March 2016

I have a dream ...

Some colours of representation:
purple for Epilepsy/Domestic Violence/ADD awareness
and for Spirit Day for victims of Homophobia
Orange for self harm and also ADHD awareness
white for causes yet named

... a dream of a judgement free place.


It has long been my experience that mental health is an oft mismanaged challenge in the lives of many people, especially our youth. We pin the hopes and dreams of our own old age enjoyments on the successes and joys we hope for and envision our youth to experience and their triumphs are a part of our joy journey and yet we, as a community, seem blind to the stumbling blocks, prejudices, hurts and dramas that play significantly on the life stage of the less advantaged youth even within our own homes.

So many topics ...

So many lost opportunities ...

So many losses ...

I wish to offer a venue of healing, story telling, experience sharing, life's truths and life's disappointments as well as those moments when we can't help but laugh in the dark, sing in the rain, dance like no-one is watching and make our own mark.

This is a place of outreach for anyone who wishes to contribute, share, tell a story, make a mark and learn, not just for their own youth, but for all who find the margins of society not good enough, inclusion a challenge or that distance claims them even in a crowd. I hope these will be their stories

Story telling has long been a teacher, moral template and history creator and the voices of our youth can contribute with vivid colour, vibrant tapestries, woven tales and undeniable truths ...

So why don't we listen and hope that in doing so we can create a place where these sharings are natural and a part of our accepted normal ... whatever that may be.

Some colours of representation:
Depression, Eating Disorders, Bipolar, Tourettes, Sexual assault and harrassment
and so many more I would like to see represented