Heavenly Beverley : Never, Ever Giving Up. Ever.

I have been so touched by the degree of support, affection and welcome ideas following my frustrated venting of spleen involved in maintaining the viability of our beloved East End Gallery. We are launching an Artisans Working Party on Thursday 3 July, our objective is an action plan going forward and, of needed, an invitation to the Council to assist us, using a written submission as our instrument.

We have already had a brainstorming session with Bec, Marion and Sue. We have succeeded in taking measures to free our public liability from the building insurance and. we will shortly be sending a waiver to all our artists, requesting they take out their own insurance as we can no longer do so.

I am actually quite pleased with my social media abilities. I write this blog, post on Facebook (my own and the Gallery pages) and Instagram, write a monthly Mailchimp newsletter and have launched Michael's web page - michaelsofoulisawardwinningwheatbeltartist.com

I don't believe that I need to embark on more and more social media. What I do believe in is tangible solutions -

signage for all artistic endeavours in Vincent Street and surroundings
support by the Visitors Centre, the Shire appointed Tourism Officer and the Shire Tourism Liaison in regular reporting by the Visitors Centre and the Shire about all our artisans' activities
financial incentives for our artisans to advertise ourselves in the Shire produced Beverley Blarney
promotion of Beverley artisans by the Shire when they hold events throughout the year, in addition to the events offered by Beverley Station Arts
the Shire councillors and staff to visit all the artisans in Beverley to appreciate our efforts adding to the cultural and financial status of our town.

That should do as a positive beginning... in that aspect of my life!

I probably would have coped with just this minute aberration if I didn't have other complications crowding in on me, all at once. They revolve around my glorious Autistic Superstar son, Alex.

To be perfectly clear, Alex is not the issue, in any way, share or form.

A succinct summary of Alex's life -

born with Tricuspid Atresia, an extremely complex congenital cardiac defect.
closed heart surgery at 8 weeks of age.
asthma diagnosis at 13 months of age.
open heart surgery at 17 months of age. On bypass and probable timing of his stroke. I expressed my concern to the staff at Royal Children's Hospital in Melbourne when he was an inpatient. My concerns were ignored.
diagnosis of developmental delay at 22 months.
diagnosis of developmental delay and hyperactivity after open heart surgery aged 3 years and 3 months. On bypass and only other possible timing of his stroke.
Autism suspected at 4 years of age.
Intensive behavioural programme began at 4 years and 3 months at home.
Diagnosis of Autism at 4 years and 7 months.
Speech pathology, OT, physio, structured play, daycare and pre-primary added to his regime.
Speech pathology, including the explicit teaching of social skills, continued until Alex finished Year 12.
Assumed to have normal intelligence through school and completed his WA Certificate of Education.
Completed Cert II Kitchen Operations, Cert III Baking and Pastry, Responsible Serving of Alcohol and Barista training.
No mainstream employment ever offered in his chosen field of hospitality.
Assumption gradually changed to Alex having an intellectual disability.
NDIA (National Disability Insurance Agency) enters the scene in 2019.
Alex's NDIS (National Disability Insurance Scheme) "plan" commences in October 2019.
Ongoing battles to correct misinformation and to address Alex's goals - for him to live safely and independently and achieve his dream of opening his own (microenterprise) drop-in cafe for the disadvantaged.
Investigation launched for his "absence spells", initiated by his employer Paraquad. These spells first noticed by me when Alex was 6 years of age. EEG at that age was inconclusive.
Extensive testing by Neurosciences and through the application of MRI. Results concluded Alex had experienced a stroke early in his life with significant damage (scarring) to his frontal lobes and cerebellum. The scarring is believed to be the cause of his "absence spells". Deficits caused by the stroke include right sided weakness, extremely slow processing and may have contributed to his scoliosis and feet issues. The combination of his Autism and ABI (Acquired Brain Injury) means that Alex has significant difficulty with daily living skills, decision making, prediction, sequencing, social interactions and functionality.
The testing also revealed that Alex has normal intelligence, a diagnosis that has changed his life. He no longer regards himself as stupid.
Alex's neurologist has confirmed that most children undergoing open heart surgery may have an "event" such as a stroke, due to being on bypass. Investigation only begins if deficits are clearly seen.
Hence, Alex has extremely complex needs that the NDIA is supposed to address through his profile and funding.
Alex's Acquired Brain Injury should be added to his NDIA profile as an additional diagnosis, given the effects the ABI has had on his life. The NDIA has not done so.
We had no assistance from Alex's most recent Support Coordinator (the conduit between him and the NDIA). She resigned, referring us to a new Support Coordinator agency who declined, declaring that "we were not a good fit". That agency then referred us onto another agency that could not accept us as Alex's level of Support Coordination was not sufficient...
My quest has also included finding a Local Area Coordinator who is proactive, nimble and intelligent. A LAC's role is to collect all relevant information for each of their clients, collate that data, prepare their clients' plans to submit to the NDIA, explain the plan's contents to their clients and advise them how they may use their funding, and assist in any changes to a client's current plan. The previous six or seven (who keeps count?!) LACs have not even been adequate in providing us with the guidance we need.
Today, after yet another pointed diatribe over the mobile to a senior LAC, I think I may have discovered a LAC with a brain. I meet him on 15 July. I am hoping to have a meeting with the rest of Alex's team on 16 July. The LAC has also recommended a Support Coordinator he has complete confidence would be "a good fit".
I may have just hit the jackpot...Watch this space.

I am going to take a couple of weeks off to concentrate on me, Michael, home and the Gallery. As long as Alex doesn't end up in hospital in the meantime as he is not very well...

And this, ladies and gentlemen, is why I never, ever give up. Ever.