Finally I am getting round to writing about the final presentation of the AUsome Cork Conference 2019. Apologies for taking so long, a combination of brain fog, disorganisation and technical difficulties, but hopefully it’s worth the wait.
Dean Beadle is a British autistic advocate and, it seems, a professional speaker. It is obvious he has a lot of experience of giving presentations and the one he gave was very polished. And yet it didn’t seem at all contrived. He speaks from the heart, and also with a lot of humour.
He talked about his anxieties and how he copes with them. And what others can do to help. One of which is “don’t lie to us” and he gave a very funny story about a trip to Australia as an example. In fact, his whole talk was peppered with funny stories and anecdotes to illustrate his points.
And then came the final surprise: he can sing! He ended his talk with a glorious rendition of “I Just Can’t Get Enough”, which had us all up and dancing. Including Jennifer Cooke O’Toole dancing beside me in her impossibly high heeled stilettos.
What a brilliant ending to what had been such a fantastic day. And even though it was quite a few months ago, writing these reviews kept bringing me back to the day and left me reliving the moment each time.
I really can’t wait for the next trip to Cork for AUsome Conference 2020!
I was so happy when this book was released as it’s a sequel to Burn the Ashes, which I reviewed here.. I was really looking forward to learning how Peony and her friends were doing, as I felt a real affinity with them.
I wasn’t disappointed. Though it took me a little while to remember who was who and how their stories had left off, it was an easy yet gripping read. And although it was clearly written for the teenage market (as was the previous book in the series) with its glossed over sex scenes, I have never let that stop me reading any book. As a child I read many “adult theme” novels and as an adult I delight in teenage/young adult ones.
And yet, the books in this series touch on many serious themes, such as the brutality of people towards those who are different. And not all of the characters make it out alive.
And now I wait with bated breath for the next novel in the series….
I no longer read articles about “autistic mice” but my husband read one today and he had such a great insight that I feel compelled to share.
The study was where they took some “autistic” poo and gave some mice fecal transplants of it and the mice then displayed “autistic” behaviours such as being withdrawn and less sociable.
And my husband pointed out that he’d be withdrawn and less sociable too if someone shoved a whole load of poo into him!
On a more serious note, even though the researchers admit they don’t know the reason for the changed behaviour, we all know the quacks are going to take this study and use it to “prove” autism is caused by parasites and that we should “cure” it by shoving bleach up autistic asses.
So, not only is it a massive waste of money that could be going to directly help autistic people who are living in poverty right now, it has huge potential for harm. But that won’t stop further studies like this. Because “autism researchers” need studies to do or they won’t get paid.
You may have noticed I haven’t kept up with my EDS Awareness Month challenge. Or written much in my blog lately. I’m having huge problems with my iPad right now. Lots of “ghosting” and other weird stuff. My phone isn’t much better for writing blog posts with, the screen is too small for the keyboard to be comfortable to write long passages with. That’s if I can wrestle it off my son to start with. And I just can’t be bothered firing up the laptop unless it’s to play Civilisation 6 on.
So, I’m going to take a little break from blogging until my iPad is fixed. Unless I have either something quick and easy to write, or something monumental that simply can’t wait.
Thanks for you patience!
Day 14: Has being sick impacted your relationships?
Of course it has.
It’s hard to maintain friendships when you have to cancel plans at the last minute because you feel to sick.
Being sick has also made me more cranky and irritable and of course this has an impact.
It’s meant that it’s easier for me to maintain friendships online or through text. I can answer when I feel up to it and can wait until my brain doesn’t feel too fuzzy to respond.
I suppose it’s also had a positive impact in that I make allowances for the fact that the other person mightn’t be feeling well either. It’s easier for me to empathise with them.
Day 13: What’s your biggest pet peeve about trying to explain EDS?
I guess it’s that most people don’t quite get the systemic nature of it. That is more than just joints being “too bendy”. That it effects every single organ of your body, not just joints.
To be honest these days, I don’t spend too much time or effort trying to explain EDS. Most doctors I see have at least heard of it and I don’t tend to talk about my general health with the general public.
If someone is genuinely interested, especially if they suspect they may have EDS too, then I’ll answer any questions they have. But other than that, it doesn’t really come up.
Day 12: Did your related diagnoses come before or after your EDS diagnosis?
My first two diagnoses were Myofascial Pain Syndrome (MPS) and Fibromyalgia Syndrome (FS). I now consider them symptoms caused by EDS and not independent diagnoses. As are all my other diagnoses actually.
I found it interesting that once I had the EDS diagnosis, the further diagnoses I was given are more “concrete” ones as it were. I find MPS and FS to be “wishy-washy” in a way was they are treated with suspicion by doctors and I have heard that they are often used as code for “crazy/troublesome/hysterical”. But once by “weird” symptoms had an “actual” explanation (EDS) then my other symptoms eg heart, digestive, neuropathy etc were taken more seriously and not put down to “part of FM (ie in your head)”.