At Last...

There is, at last, cause for celebration. Having waited for five months, Alex's new plan has been approved by the NDIA. In fact, his plan arrived with the quietest of fanfare possible. I was only alerted to its existence by Alex's Plan Managers (the agency that pays the invoices submitted by Alex's service providers and therapists). Our Local Area Coordinator, Charmonique, was informed somewhat later, and given its significance, enthusiastic shouting from the rooftops would not have been out of place..

Alex's budget has been increased and wonder of wonders, we have secured more Support Coordination hours. If fact, the hours have been tripled. Having begged, cajoled, grovelled and pleaded for this increase, I had to read Alex's plan a number of times before the reality actually sunk in.

Easily the most rewarding part of this process has been becoming acquainted and collaborating with Charmonique. I had just about given up on the concept of Local Area Coordination, believing those employed in that role were about as useful as tits on a bull. In my humble opinion, the Mirrabooka Mission Australia office and the majority of their LACs need intensive and specific training, (such as resisting the urge to cut and paste) along with an explanation of showing empathy and learning to be inclusive rather than combative. 

I think Alex's transfer to the Subiaco Mission Australia office and the appointment of Charmonique as Alex's LAC has been a godsend. She involved me in the planning process from the moment we met. My words were including in the Plan Review submission. We held two meetings devoted to this task and then a meeting following the launch of Alex's Plan. She provided an easy-to-read breakdown of the Plan, with explicit information and meanings of the different funding and how that funding could be used. I can contact her directly through email and phone, which has been so very satisfactory and so unlike the silence, misinformation and hostility I experienced at the Mirrabooka office. I am now firmly part of Alex's team.

Ladies and gentlemen, I finally feel that my relationship with the NDIA is positive and meaningful. At last.

As a result, I have been playing "At Last" whilst I have been writing this post. Previously, I was only familiar with Etta James' 1960 version, her voice playing in my head as I began. Then, I have discovered that "At Last" was first performed in 1941 by Glenn Miller and his Orchestra. Having listened to his rendition, I can now say that I am a convert, loving the big band bluesy sound.  Do yourselves a favour and listen to both versions. I would be interested in others' thoughts.

I am hopeful that my growing understanding of the NDIS' operation and Charmonique's assistance will smooth any potential hiccups in the future. Being more certain of the principles, rules and guidelines of the NDIS has allowed me to be more confident and less adversarial. I actually believe that the NDIS can work to enhance Alex's life.

Knowledge is power, people. At last.

 

 Uncle Alex with Imogen - December 2019...

 

 

 Uncle Alex with Violet - March 2023...

 

 

 

Employee of the year 2022 @ Paraquad...

 

  

 

Very happy customer of the Lego Shop! 

 

 

Showing off his particularly cool haircut... 

 

 

Alex as the Man about Town...

 

 

With Pascal, his Support Worker to the Stars

 

 

Finally getting my head around the NDIA...

 

 

The terminology now actually makes sense ...  

 

 

Ever...

 

 

Accentuating the positives...

 

 

 

Glenn Miller - featuring "At Last"...

 

 

His music is timeless...

 

 

Miss Etta James - also, a great version...

 

 

For those who wish to play "At Last".

 

The Occasionally Awful Hilarity Of Age-Related Tests...

Becoming older is not for the faint of heart. Whoever thought retirement and beyond was all beer and skittles was delusional. Now don't get me wrong. Not working is great. Being surrounded by stunning artworks in the East End Gallery is the best gig ever. However, there have been times I have seriously wondered if we will survive financially to fight another day. Somehow, we have always managed to save ourselves from the ignominy of bankruptcy by the grace of God and the skin of our teeth. I just hope these miracles continue until we are old and decrepit.

Then, there are the fabulous health "benefits" of ageing, starting for girls around the age of forty. My first mammogram revealed microcalcifications in my left boob, which necessitated a biopsy. This procedure was possibly one of the most painful events I have endured in my entire life. Back in those days, I was slim. Which meant my tits had mostly glandular tissue and very little fat. Apparently, glandular tissue does not compress well, causing excruciating pain upon the insertion of local anaethetic. Once that ordeal was over, the surgeon was vacuuming when he suddenly uttered "I think I've hit a blood vessel. We may have to stop..." To which I replied "If you think I am coming back voluntarily for this, forget it. Now stop the bleeding and get on with the procedure!" The microcalcification was successfully removed, I bled all over their equipment and I enjoyed a cup of sweet tea and biscuits before they would allow me to leave...

Later, I had a uterine ablasion for peri-menopausal symptoms that was far more pleasant as I was unconscious. I have also has a pelvic x-ray checking for ovarian cancer which is rather akin to having a large erect penis shoved up one's vagina. Mammograms have become a regular part of my exciting social schedule, along with blood tests for every known condition and a brain MRI after I started lactating following Imogen's birth. I was convinced I had a brain tumour and was unexpectedly underwhelmed when I discovered that I had neither a tumour nor a brain.

The delicious Doctor Daram has been cutting skin cancers off my body for many a year. Now, this bloke would have to be one of the most gorgeous chaps I have ever seen. And he has fantastic bedside manners. Every six months or so, much to my dismay, I stand in front of this divine being whilst he utters, "down to your bra and knickers, Kate". And then he usually finds at least another spot that necessitates immediate removal. At the point of the local anaethetic injecting, I usually express my displeasure by bellowing "Fuckity, fuckity, fuckity, fuck!". Michael and Daram then roll around the treatment room, paralytic with mirth whilst the anaethetic takes effect and Daram then ensures the extinction of yet another skin lesion.

I had had both shoulders cleaned, my right ulna shortened, my ankle repaired and two knee replacements. Michael has also had his shoulders repaired, along with multiple carpel tunnel releases, ulna shortening, a wrist fusion, artificial tendons supporting his left thumb and two hip replacements. 

Michael has also been subject to the extremely intimate checking of his prostate gland, along with regular gastroscopies and colonoscopies. These day surgeries are the pinnacle of embarrassing procedures, which means one just has to grit one's teeth and think of England. Let me explain...

Gastroscopy (downoscopy) is the preferable. No nasty potions to take. Just fasting, followed by being asked to swallow a tube whilst under sedation to check one's tummy and duodenum. Colonoscopy (uposcopy) is an entirely different ball game. The process begins with the removal of any fibre in one's diet two days previously, followed by the consumption of laxatives and "colon prep" which is designed to strip one's bowel of all solid material the day before the procedure. To state this process is unpleasant is akin to comparing an elephant to a T Rex. Yet, those of us at risk from digestive issues dutifully undertake this horrible task as we are directed. 

Michael was subjected to both "oscopies" last Friday. He came through with flying colours. Polyps from both his duodenum and bowel were expertly excised. We have the photographic evidence for all interested or intrigued parties. We are very grateful and hopefully, he will not have to face this ordeal for another five years. If all these tests mean we remain as healthy as possible, then they are worth the effort.

        Just don't ever suggest that becoming older is easy!

 

 

 

 

 

 

 

 

  

 

 

 

 

 

 

 

Vale Mister Pip

Pip, the seemingly immortal Jack Russell/Tenterfield Terrier cross, finally flew to the big Dog Exercise Area in the sky. There, he will have been reunited with the love of his life Sascha the winsome Weimararner, along with Ruby the blunderdog Beagle and the first Ruby, otherwise known as Madame Cat. With a chance once more to run, to play, to sniff, to lift his leg without difficulty and to be enveloped by Sascha's adoring warmth.

How can I adequately say goodbye to a feisty little canine bastard who was part of our lives for sixteen years? To honour him, warts and all. To describe his personality. His never ending loyalty. I hope he understands the decision for him to fall asleep permanently before suffering became his constant shadow.

Pip was a rescue dog who arrived in my heart when he was ten months old. He had been abused before he was fostered. The mad woman who led Best Friends Animal Rescue was only interested in the best outcomes for her dogs. I had to prove to her that Pip belonged with us. And I succeeded, with only one one or two hiccups along my trial period.

Pip fell in love with Sascha on sight, and she with him. They ran together, ate together, played together and slept together from Day One. And I quickly learnt that he was fearless. He approached play with serious ambition, along with sustained noisiness and pretend nipping. He initially hated men, having been beaten as a pup and was terrified of any item that resembled a stick. In my naivety, I didn't really notice that he bit my then most unsatisfactory boyfriend twice. I should have paid attention...

What a different story when Michael arrived on the scene. Pip voluntarily leapt into Michael's lap on their first meeting. Ruby the Beagle was always vaguely uncomfortable with her canine companions as she really had little clue what type of creature she actually was. Though, she did enjoy being one of the Three Stooges, when they would all pile onto one of my oversized arm chairs. Sascha and Pip tolerated both Rubys with mild amusement, including them in their intimate circle when they showed inclination to join in.

Pip loved to run. He was like a small white streak powering alongside his beloved Sascha, their bounding rhythm accompanied by lively canine utterings. However, he never required a lead on our expeditions. He would stay by my side and always return. And he was the perfect partner for our big beautiful girl.

Over the years, as our loved fur babies aged, they slowed down. First Sascha, who lived until she was fourteen, a great age for a Weimararner. She just couldn't get up one morning and that was that. Then the simpleton Beagle, Ruby, whose pure cunning kept us on our toes for most of her life. She descended into the awful fear caused by doggy dementia. We couldn't bear for her to be so bewildered and scared. Both our girls were cremated and we have beautiful certificates as a record of how much they were loved.

About the time that Ruby died, I really thought that Pip would pass away as well. He'd injured his cruciate ligament and was housebound and miserable. We left him with a wonderful chap, who along with his wife and their dog Daizee, acted as our house sitters whilst we travelled to the north west in July 2019. I don't remember his name, but I remember his affection and kindness. He would take Pip for short walks on the lead twice a day for interest. He gave Pip lots of attention. By the time we returned in August, Pip's cruciate ligament had healed and he had rediscovered his liveliness.

And Pip had another reason to reclaim joy. We returned from Carnarvon with Stella, a four month old jet black Kelpie/Staffy cross. Once more, Pip had a companion to share his life. He returned to his former being as a doggy Speedy Gonzales, charging across the oval with Stella as they played chasey or tag. He cheerfully accepted the arrival of the crate where they were confined when we went to the Big Smoke. The next two years, they both travelled with us to the North West, revelling in the excitement of the trip and experiences.

But even our Pip couldn't live forever. His heart valves were wearing out. Medication for that, diuretics for getting rid of excess fluid, a linctus to sooth his cough. He was losing weight, turning up his nose at his dinner and even rejecting the pate into which we mixed his tablets. He was almost blind and deaf. And then he could no longer totter out for a walk to the oval. The inevitable was coming.

I chose to euthanase Pip almost two weeks ago. I wept with our wonderful vet, Doctor Graeme Penno, who had been part of our lives since 2012. I cried and I laughed as Graeme and I reminisced over Pip's records, all saved for posterity - "aggressive - muzzled", "assertive - muzzled"; the time Pip used diarrhoea as a Weapon of Mass Destruction, all over Graeme and the treatment room; the young vet who was frightened of Pip and he took full advantage; the episode I had to fetch Pip out of the kennel when he growled at the inexperienced receptionist; the gradual acceptance by Pip of visiting the vet hospital as a necessary evil. 

Graeme sent us the most heartfelt condolence card, assuring me that I had made the right decision for all the right reasons. We are so fortunate that we have the most empathetic of vets and vet nurses at Northam Vet Hospital. If you are local (ish) to Northam, do yourselves a favour and get your animals cared for by this team.

Our relationships with our beloved pets and those who help care for them is ongoing. We still have Miss Stella, Mister Chop and Mister Red. And as for another dog? Stella would not do well as an only dog. Chop is a great substitute, but he isn't actually a dog. So, we are hopeful that we will become parents of a Poodle cross puppy later in the year. A very long time ago, Michael had a black Poodle/Kelpie cross named Kelly. He and Michael were inseparable, until Kelly too succumbed to old age. Like all our other pets now residing in the universe, we know they are irreplaceable. They live on in special compartments in our souls. But, we find grief becomes more bearable with the addition of a new furry member to our quirky family.

Sending love and light to you, Mister Pip.

 

 

The original Three Stooges...

 

  

 

Winter - 2010...

 

  

 

The lovers...

 

 

 

The Three Stooges - Autumn 2017 

                                 

Ruby and Pip 2018..

 

 

Pip with Stella - spring 2019...

 

 

Sleeping with the enemy 2021...

 

                                 

In his twilight...

As I remember him - love you always, Mister Pip.

 

When Validation Is Not Entirely Triumphant...

Curiouser and curiouser, said Alice. Are we all mad here? Hell yeah, I am positively certifiable. There have been so many instances throughout my life when I considered myself down at the bottom of a Rabbit Hole. My childhood was chaotic and I married very young to escape my Mum. I was abused by her, she was abused by her mother, my grandmother was abused by her father. I vowed that the buck would stop with me; that I would be a fabulous Mum and my children would feel loved and cherished. And that they would have the best lives possible. 

As I muddled my way through my version of motherhood over the last three and a half decades, I wandered up Wonderland's garden path on more than the odd occasion. I have wrestled with uncertainty and guilt and listened to more than my fair share of "specialists" (DRINK ME! EAT ME!) when perhaps I should have been more skeptical of their opinions and more sure of my own. 

But what did I think I knew?! After all, I was only the bloody parent! 

My boys had Rapid Transit (otherwise known as "peas and carrots syndrome" for obvious reasons) throughout babyhood, toodlerhood and early childhood. The problem resolved once they were toilet trained and developed a wider diet. Yet a naturopath decided Callum was allergic to just about every food group, his diet was severely restricted and he fell off the bottom of the weight chart for his age. Our GP was furious and instructed me to let Cal eat whatever he wanted. 

And toilet training. Every man and his dog had their opinion of toilet training. Callum toilet trained himself at daycare over the course of one session, once he wasn't being hassled by all and sundry. Alex was a bit more complicated - he had to watch the piddling process to put two and two together. The penny dropped for him once he saw the connection between the sensation and the actual peeing.

Bullying. My pet hate. I seriously wanted to harm those who bullied my children. The rage would rise inside me, particularly when the inevitable minimisation was launched by those in authority. As a result, much of Callum's school-life was miserable and the sunny, eager, social boy only re-emerged fully when he went to uni or when he was dancing.

I officially complained to the Education Department when Alex was openly discriminated against by a long-standing music teacher at his primary school. No action was taken. So, he moved to another school with a more caring ethos that I headhunted with the help of school psychologists.

At least high school was successful for Alex, as I stuck to my guns that he would flourish in mainstream education. With a superb team of Education Assistants, a proactive principal and practical teachers, Alex achieved his WACE (WA Certificate of Education) at the conclusion of Year 12.

But, most of my energy, innate knowledge, instincts and perseverance were all sorely tested by the long journey Alex and I undertook for most of his life. We understood that Alex would be born with Tricuspid Atresia, a complex right sided heart defect with some similarities to Christopher, my baby who lived for forty-eight days in 1987. What I didn't realise was that that was only the beginning. I was to be disbelieved, ignored, belittled and doubted - there was even a suggestion that I had Munchausen by Proxy disorder when Alex was very young. Insult after insult from all those who should have listened to me.

I voiced my concern that Alex had suffered a stroke during or after cardiac surgery when he was seventeen months old. I had been told there was a risk of this occurrence.  My opinion was never acted upon. Thirty years later, we have discovered that Alex has a significant Acquired Brain Injury (ABI).

The speech pathology department that never recognised Alex had no gestures - a key indicator for Autism.

The clinical psychologist who diagnosed Alex with an intellectual disability. Which he doesn't have. This falsehood reared its ugly head again after he left school. Alex has normal intelligence.

The five sets of grommets that caused permanent perforations in his eardrums. The grafts that needed to be inserted to fix this preventable result.

The endless process of understanding jargon, learning new definitions and arguing our case in a variety of settings that are not user friendly.

The exhausting, bewildering and time-consuming dance with the National Disability Insurance Agency. The total frustration of dealing with staff inadequacy, lack of communication and downright laziness. The ongoing emails, meetings and phone calls.

I finally think I may be emerging from the Rabbit Hole. A complaint to the Minister's office appears to be having a positive effect. Alex has a competent and intelligent Local Area Coordinator, a Speech Pathologist, an Occupational Therapist and a Therapy Assistant. He has a wonderful Support Worker on Saturdays and supervision at work. The only uncertainty at the moment is his new Support Coordinator, who begins next week. This will be his third in two years. Disability agencies have a turnover rate that is unhelpful to their clients and the issue needs to be addressed.

The confirmation of Alex's ABI should have given me some satisfaction. The intensive neurological assessment has outlined Alex's strengths and his challenges. Most recently, a review by the Acquired Brain Injury Rehabilitation Medicine Outpatient Clinic (now that's a mouthful) has confirmed the extent of Alex's ABI and that he will need lifelong support. The combination of Autism and his ABI has caused significant deficits in his Executive Functioning, which has consequences for the entirety of his life.

(The phrase “executive function” refers to a set of skills. These skills underlie the capacity to plan ahead and meet goals, display self-control, follow multiple-step directions even when interrupted, and stay focused despite distractions, among others.

Much like an air traffic control system at an airport helps planes on different runways land and take off safely, executive function skills help our brains prioritize tasks, filter distractions, and control impulses.)

I wonder about the "what ifs" that may have happened if I had been believed all those years ago. And there is still the ongoing battle to receive information and reports concerning Alex in a timely manner. I struggle to convince some of the Grand Pooh-bahs and their minions that I am worthy enough to not have to ask repeatedly for correspondence to just be forwarded to me. Every time.

Alex is important. I am important.

 

 

Glad we sorted that one out!

 

  

 

Down the Rabbit Hole...

 

 

 

 

Always trying to work out what to think and do...

 

 

 

 

Alex cardiac physiology at birth...

 

 

Another of his challenges...

 

 

An explanation of Autism. Each person has their own brand...

 

 

An explanation of Frontal lobe ABI

 

 

Why executive functioning is important is our lives...

What may occur in executive function damage...

 

 

Meanwhile, negotiating the pathways...

 

 

Or does it matter?

 

 

Alex (right) with his fabulous Support Worker, Pascal...

 

 

Me!

 

 

 

Thus endeth the lesson!

 

 

About As Popular As A Dag At A Sheep Show...

Good morning, world! After yet another lengthy absence due to all sorts of impediments, I have vowed to get back in the saddle and finish this post, which I started eleven days ago.

For those of you who may not be familiar with the Australian vernacular, the origin of the phrase "about as popular as a dag at a sheep show" refers to the matted, dung encrusted wool that may hang from a sheep's rear end and not a welcome sight when judging sheep at an official show. Hence, to be described as a dag is a bit of an insult as one is not popular in any way, shape or form.

My own reckoning - feeling like that dag at a sheep show - finally arrived in the form of Covid19. The bastard first reared its ugly head as breathlessness whilst on a walk with the divine Jan George. I didn't pay any attention whatsoever to this symptom - I just thought I was really really unfit! Four days later, prior to meetings in the Big Smoke, I carried out a Covid test as I thought I was coming down with a cold. A negative result. Proceeding with that day at my usual manic pace, I was particularly exhausted by the time I returned home. Next morning, the awful truth was revealed. I had succumbed to coronavirus...

So, I followed the protocols. I reported my positive status and began isolating for five days. Our wonderful GP organised anti-viral medication for me, so I never moved beyond mild symptoms. Some of the fear I'd experienced about catching the virus was also relieved.

It never occurred to me that others might have a similar innate terror regarding Covid 19 until I returned to the Gallery to assist Michael. Wearing a mask, keeping my distance and declaring that I was Day 5 with a Covid infection caused a sizable number of guests to flee out the door. Others, interestingly, just shrugged their shoulders and continued browsing through the Gallery. 

Remember the days before Covid, when influenza was the illness to avoid? Even though we all knew that we could die from the 'flu, many of us were nowhere near as vigilant in protective behaviours. Influenza killed millions in 1918 - 19. HIV/AIDS was a more recent pandemic. Lyme Disease is rife in North America. Ebola and other hemorrhagic infections continue to cause havoc in Africa. Diseases that jump from certain animals to other animals to humans - Hendra virus, Nipah virus, Australian bat lyssavirus. None of these very scary diseases are new.

Yet, Coronavirus had to emerge, worldwide, as a reminder of the fragility of our bodies in the form of a new virus. And the disease confirmed that a virus was able to jump directly from animals to humans, and followed by human to human transmission. How did this occur? Our arrogance - the captivity of animals in close contact with humans, coinciding with the destruction of their natural habitat. When we remove these habitats, where do the displaced creatures go? Closer to us. And now we pay the price as diseases  are emerging for which we have no immunity.

I don't think I will ever be blase about illness again. I understand the reactions of others who shied away from any possible contact with me when I was Covid positive. The greatest puzzle is how Michael avoided catching the virus from me. He remains, to this day, Covid negative. Work that one out!

Enough musing about dags and viruses. Stay tuned for my next thrilling adventure!

 

 

All is well in my world!

 

 

Common sense? Seems to have become rather uncommon!

 

 

Who still uses Vicks? ME!

 

 

The ups and downs of the pandemic!

 

 

And of sheep.

 

 

Black (sheep) comedy...

 

 

There's a dag scale!

 

 

About as popular...as Coronavirus!