What Happens When I'm Bored!

After our marathon in the Big Smoke last Tuesday, Wednesday was to be our first official day back in the East End Gallery for 2022. I was hoping to welcome new guests and old friends. I even dared to dream that we might have a sale or two. As Australia Day celebrations were due to finish at the swimming pool at 3pm, I thought we might attract a few bombie champions on their way home.

No such luck. Wednesday rapidly turned into a groundhog day, sitting at my desk with a cuppa, twiddling my thumbs and wondering how I was going to stay awake until five o'clock. That was when I glanced in the direction of the Giftshop and experienced vague disappointment at its arrangement. That feeling was all I needed to spring out of my chair with renewed vim, vigour and vitality.

"I'll just change the position of  a few art pieces" was the voice of reason inside my head. Bollocks to that. Damn the torpedoes. If I was going to refresh the Look, I would have to do more than shuffle the odd piece from one side of the Giftshop to the other.

Hence I began a four day frenzy imitating a Whirling Dervish. Cloths on tables were pulled off and sent for washing. Dusting and cleaning surfaces, changing the position of my displays, cleaning four weeks of dirt away and experimenting with new combinations of pieces. I even moved Michael's "The Goldfields in My Garden" stand from one spot in the Gallery to another and then back again. 

I thoroughly vacuumed the Gallery and the Giftshop, removed a multitude of deceased insects and startled a gecko who had made a home under the sheet across the front window ledge. I resurrected all our bottle collection and soaked them in detergent and ammonia. Some of the sludge that was removed from inside of the bottles was truly revolting. Finally, I arranged the largest bottles in our front window and the rest in a shallow plastic crate on the Artists Table in the Gallery for ease of viewing. 

Saturday was our last day in the Gallery for our first week back in the saddle. Just as I had given up all hope of any sales, in walked Bruno and Patricia, relative newcomers to Beverley,  who had already purchased a stunning piece of graphic art by Debbie Spinks. In celebration of Patricia's birthday, they chose two of David Lillico's leadlight birds - a magpie and a kookaburra - to take home. Later in the afternoon, when the weather had turned hideously oppressive, great buddies Lorraine and John Pichugin waltzed in. Lorraine, who is a stunningly talented painter, had been artist-in-residence at the Station Gallery in 2021 and is returning in July for another two weeks. She had fallen in love with Narelle Higson's oil pastels "Everlastings" and came to pay and collect. She also picked one of Sandy McTigue's clay mache vases, extolling its perfection as a subject in a new work.

Suddenly, we had enough commission to fund two tanks of diesel to carry us to Toodyay on Sunday for a family gathering and me to the Big Smoke (again) today to see Alex's GP. 

However, I hadn't realised how tired I was due to all my activity. I fell asleep on the way home from Toodyay, woke up enough to watch "Muster Dogs" on the telly and then retired to my boudoir. Having travelled to Perth to set up referrals to investigate Alex's 'absent episodes' which may or may not be some sort of silent seizures, I will not be out of bed for much longer. 

Hell, what's a bit of weariness. I am thrilled at the finished product. So, without further ado, let's share a peek at the East End Gallery as we enter February.

What are you waiting for? Come up and see us soon! 

Stuck In The Middle With You...

Back in the time of the dinosaurs, a talented chap named Gerry Rafferty formed a group, Stealers Wheel, and they recorded a ditty called "Stuck In The Middle With You". One line of thought is that the lyrics were a reference to all the razzmatazz that goes on in the music industry. Another opinion was that the words depicted sharing a stage with Billy Connolly. Whatever the meaning, the chorus has always stayed with me, particularly in times of frustration...

"Fools to the left of me, jokers to the right, here I am, stuck in the middle with you".

Dealing with the NDIS has seemed to mirror the chorus of this song. Or hitting my head against a brick wall repeatedly. In the past twelve months, I have requested at least three reviews or change of circumstances for Alex's NDIS plan. A new and totally inadequate plan was launched with much fanfare in September.

Back in Spring 2021, I was starting to get the handle of my latest Department of Stealth and Total Obscurity - the National Disability Insurance Agency. With the assistance of advocate Jeanette Barnesby, new plan manager Kathryn Salt and new support coordinator Shannon Kirk (beginning in November), all that was as clear as mud is becoming a little less opaque. Not entirely visible yet of course.

Brand spanking new Local Area Coordinator Katie-Ann (our fourth in two years?) and I met at lunchtime last Tuesday. The purpose of this meeting was to thrash out Alex's new plan, which will hopefully (better) meet his needs and be launched before hell freezes over. She was most refreshing in her approach as -

1. I could actually understand her!

2. She appeared genuinely keen to help Alex meet his goals, including forward planning for his dream of opening a drop in café.

3. She was empathetic and most illuminatingly, honest about her capacities to aid Alex live his life most ordinary.

For the very first time, she explained that the LAC role was primarily to set up NDIS plans for clients, most of whom would be satisfied with this process. She also informed me of the NDIA Planner pathway. Launched back in 2018, (I checked), these services were offered to clients with very complex needs - homeless, incarcerated or with severe and persistent mental health illness.

Alex is too complex for just LAC support and not complex enough to warrant receiving the attention of an NDIA Planner. We are supposed to manage with the help of Shannon, our Support Coordinator, along with Katie-Ann. Which would have been excellent is the NDIA had given us enough hours. Since November, Shannon has used nineteen of the allocated twenty-four hours of support funding allocated to last (!)  until 2024.

Hence, an immediate need for more Support Coordination hours. We have also wished to add Alex's other conditions to his NDIA profile to truly reflect his status. We have pointed to glaring issues with his transport funding, his support funding and Alinea's ability to "upskill" Alex so he could progress with his goal of having a drop in café. Needless to say, we are still waiting for feedback. 

Just before Christmas, we received the off-the-record verbal affirmation that Alex's plan review would go ahead. I was momentarily ecstatic after so much disappointment. Then the NDIA closed down for their Christmas break, because nobody requires services at the end of December/beginning of January, do they?

Finally, phonecalls to the NDIA and the Minister caused the process to recommence. Hence, the meeting with Katie-Ann last Tuesday. On 25 January. After being given the go-ahead at Christmas...

Alex is nearly thirty-one years old. I have always aspired to the mantra "knowledge is power". So I can make informed decisions that affect his and my life. Unfortunately, the NDIA/NDIS does not always appear to follow a similar path.

My entire 2021 was spent seeking information out through a series of chance encounters. Many thanks must go to Stacey Marasco and Lesley Brown who first mentioned the term "Support Coordinator" back in May. Then through Connect Case Management, who provided Alex's Daily Functionality report, in July, I changed Plan Managers (the people who pay Alex's NDIS bills) from a useless mob in Melbourne to Your Choice Case Management here in Perth. Through Evan Salt, I then met Jeanette Barnesby and Kathryn Salt who pointed me in the right direction towards Support Coordination. That is how I connected with Shannon Kirk from District360, who has been unfailingly generous with her explanations of the NDIS juggernaut. Her work ethic to assist Alex and me has been phenomenal.

Just as well. My carer fatigue is now chronic. There is no way I could continue to support Alex to live an ordinary life without these dynamic people who continue to provide me with growing comprehension of the NDIS' modus operandi. These individuals continue to go above and beyond and I can only thank them profoundly from the bottom of my heart.

Shannon and I have a bet, utilising imaginary sheep stations, regarding the timing and content of Alex's latest plan. She is quite optimistic. I just live in hope...

So, this is the NDIS...

This is what dealing with the NDIS feels like..

Do these blokes run the NDIA? (Image from "Reservoir Dogs"...Quentin Tarantino) 

Maybe these chaps?

Which led to this...

This...

And eventually to this!

I now have guides to help me...

Yes please!

This is Alex/Big Al/Man-child/Autistic Superstar. His is the face of our NDIS experience...

That would be fabulous...

Yeah Baby...

So Alex can live his ordinary life. Love you, Big Al.

Additional Bedtime Companions...

Bedtime in the Inner Sanctum has always been a tad crowded. Until recently, our bed was inhabited by Michael and me, Stella and Pip, Chop and on cold nights, Suey has been known to join us. 

Pip, now sixteen, has been prescribed diuretics to assist his congestive heart disease and needs access to the great outdoors to relieve himself at a moment's notice. As he has to be lifted on and off our bed, he only had to wet through to our base once before we banished him to his own bed he can tackle. Once we added a sheet and his own pillow, he decided that his alternative night digs are quite satisfactory.

As a result, our bed has become a touch more spacious and we tend to only accommodate Stella and Chop through the wee small hours. However, I have welcomed a couple of new and intimate companions, who shall remain  integral buddies for the foreseeable future.

After my infamous sleep study back in spring, I was advised that I was suffering apnoea episodes thirty-eight times an hour. This was labelled severe and obstructive and the solution was deemed to be a CPAP machine. I was duly loaned a device over December and the beginning of January. Air at a particular pressure worked to keep my throat open, reducing my apnoea spells to a trickle. The effects were pretty extraordinary. I regained the ability to function later into the evening, rather than being exhausted on the sofa by six o'clock.  

However, I was aware of the ticking clock which meant the returning of the loan machine and all the associated paraphernalia. Thankfully, a Beverley local came to my rescue, bequeathing to me a slightly older model, which due to some rather distinctive decorations, I have named Batman. I have great affection for the 1960s series of Batman. Known for the crooked floors at the bad guys' hideouts, celebrities just happening to open a window as Batman and Robin are supposedly climbing up the side of a tall building, fantastic sound effects with lots of onomatopoeia thrown in for good measure, a fast and furious theme music and gags aplenty, this series refused to take itself seriously. Far better than some of the dire movies featuring Batman that we have all endured over recent years.

Once again, I have digressed. Securing Batman the CPAP machine was only part of the equation. I had presumed that the head gear and mask that I had used for a month was mine to keep. Not so. Bollocks.

Due to our usual lack of money, I needed to resort to one of the afterpay facilities to fund these necessities. One complete set of mask and head gear, one spare set of head gear and two spare mask "cushions" came to the astonishing sum of nearly five hundred dollars. And that was after I'd "shopped around". Hooley Dooley. At least I don't get charged interest if I pay for these items on time...

My mask is full face and has the tube leading to the device coming out from the front. Hence I have christened this equipment Mister Elephant. He and Batman work together as a team to ensure I have a better quality of sleep and no longer suffer from chronic tiredness. I have become completely comfortable with my bedtime "look", which could certainly not be described as haute couture.

However, I was delighted to discover another well known Australian sporting elephant headgear and being photographed. Blue Wiggle Anthony Field joined the rest of the group performing a cover of Tame Impala's  "Elephant" which was originally released in 2012. Adding their own slant by including part of their hit song "Fruit Salad" the Wiggles take on "Elephant" has just been announced as Number 1 of radio station JJJ's Top 100 for 2021. 

How's that for a bedtime anthem?

Stay tuned until next time!

Some of the usual suspects on our bed...

Introducing...Batman!

And his scaly mate, Mister Elephant!

Inspired by -

Not inspired by this...

Definitely inspired by this bloke, Anthony Field, with the trunk. Methinks Tame Impala should follow suit!