In a feeble attempt to prevent this post from being too serious, I am tossing in a reference to the "Hitchhiker's Guide To The Galaxy". According to that invaluable publication, which has "Don't Panic" in carefree red lettering on its front, a towel is vital to the average interstellar traveller.
Here is the Guide's extract about possessing a towel -
"Towels are the most useful thing it is possible to have handy in a crisis. One of the first things that Ford Prefect did for Arthur Dent after the demolition of the Earth was to equip him with a towel.
They can be used for snaring birds whilst falling from a three-mile high marble statue.
They can be used to signal temporally unstable spaceships by fossilizing them in planetary strata.
They can be soaked in nutrients to provide sustenance in awkward situations (Although, as Zaphod Beeblebrox found, this is not a terribly tasty solution to hunger).
They can also do a really good job of drying between your toes.
The Hitchhiker's Guide is full of suggestions for successful towel deployment. It is worth noting that a cup of white vinegar in a wash will help keep your towels fluffy and soft."
A towel can also be rolled up as a pillow or become an impromptu cloak. Pity that I faced none of these scenarios yesterday. A Pandora's Box full of other issues caused me to wish that all could be solved by the comfort and practicality of my towel.
Yesterday began early. Alex was having a further Daily Functional Capacity assessment, to provide occupational therapist Mel and observer Alice to have the necessary information to address the dreaded NDIS Assistive Technology form. Support Worker Jacob was also there, undertaking his final shift with Alex. I made up the last of the crowd in Alex's unit.
Two hours was spent reviewing and recording Alex's current baselines. His unsafe flooring was duly noted and photographed to be attached to a letter for the Housing Authority. Mel was really pleased of the progress made with our Support Co-Ordinator Shannon, but was exceedingly puzzled by the lack of her hours funded by the NDIS. She will submit Alex needs more Support Co-Ordination hours. We will also request occupational therapy sessions, more support worker hours and hopefully enough evidence and grounds for the AT form to reimburse my dear friend for the cost and installation of Alex's air-conditioning and solve the confusion surrounding his orthotic funding.
As we were winding up, I mentioned that Alex and I were seeing his doctor later to discuss the mystery of suspected head trauma identified in a recent MRI. Mel asked me to send her the details when I had a chance. Shannon had already done so. Alex and Jacob set off to do some shopping and I stopped to pick up dog log and an easy dinner for Michael and me. Ominously, the specialist dog log was all held up somewhere between the Eastern States and us, so I settled for some kangaroo and sweet potato mixtures. Little did I realise that was just the beginning of some unfortunate events.
Alex, Jacob and I reconnected at the doctors' surgery. Mark Flynn is one of those fabulous quacks that has a tendency to run late. Yesterday afternoon, he was running late. We eventually had our turn. Then the bomb shell. Alex's MRI had been interpreted by a radiologist and a report had been written. The findings were that Alex had sustained a significant brain injury to both his frontal lobes with some cerebellar and occipital lobe involvement. Probably very early in his life. Which meant that his autism diagnosis may have been given incorrectly as his symptoms mimicked those of being on the Spectrum.
I was stunned. Mark was flummoxed. These were not the results he was expecting investigating Alex's blank episodes which had occurred since he was a very young child. Mark theorised his blank episodes could have been triggered by scar tissue from the trauma. I remembered insisting Alex's capabilities and personality had changed after his second cardiac surgery in Melbourne in September 1992 at Melbourne's Royal Children's Hospital. Who listens to the parent?!
This injury had not been caused by a knock to his head. This was way beyond concussion. This was not damage caused by a stroke. Something terrible happened to Alex around that time when I wasn't with him. The only times I wasn't with him were when he was undergoing surgeries in hospital, either in Perth or Melbourne or if I took a break and left him in their care.
Last night I did not sleep much. I had deciphered some of the scarier aspects of his MRI report. I followed a timeline in my head from Alex's birth. His conditions, his surgeries, his hospital stays, his diagnosis with "developmental delay and hyperactivity" at two years of age followed by his autism diagnosis at four years seven months. He had never toe walked and never head banged. That he was frightened and lost had been obvious. And I remembered the thrill of his success gaining skills using Applied Behavioural Analysis. He's had a social trainer providing a physio and OT programme, speech therapy for thirteen years and my brilliant babysitter Kacey teaching him structured play. And other children with Autism had always unsettled him.
But nobody had thought to look at his brain...
Mark has requested an appointment for Alex to be assessed by Neurosciences at Graylands Hospital for neurological deficits. Unfortunately, Alex had to cancel (!) his appointment for an EEG as his chest "sounded horrible" and we were sent for a COVID test instead yesterday afternoon Neither of us has COVID.. We also have to reschedule his EEG and see a neurologist.
Alex was confused and uncertain by this new information. Mark and I both assured him that he was still Alex. The possibility of a diagnosis change didn't alter him one iota. Then I joked that I had hoped Alex would be less complicated as he become older and I could sit back, do very little and drink vino. We all laughed...
My young man, Mister Alex Christopher, has overcome so many obstacles in his thirty years alive. He loves exercising, going to Church, meeting his friends, being a Café Attendant at Paraquad, enjoying a movie with Cal, being uncle to Miss Immy and putting up with his Mother. He dreams of opening his drop-in café for disadvantaged people. Alex is my Superstar.
And I love him to bits.
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