Hello everyone! Where do I begin…..it’s been over a year since I published anything here. That’s partly because I’ve been busy but also because of demand avoidance (DA). I’ve written a few paragraphs here and there and then either doubted if they were any good or just hit the DA wall. It’s been quite frustrating really. I want to help people and keep people updated but it’s hard sometimes, even with a strong desire to do so. Right, where do I begin? Do I begin here or backdate with the past year? Maybe a bit of both? I’m just rambling now. Rambling with DA writer’s block! Lol 😂
Well the past year has been good on the whole. I’ve become a parish councillor and started a Women’s Institute and became its president! Crazy hey! 😜 I’ve also had several run-ins with a mental health service who don’t “get me” and who are threatening to mess with my meds when they are working just fine. In fact, I have an appointment tomorrow (Wednesday 17th April) to see a psychiatrist I saw late last year who was nothing short of horrible. She didn’t understand me, didn’t try to and didn’t listen. She made no adjustments for me and at one point shouted at me! We’ve been in communications with the CCG to see if they can’t assign me to someone else and sadly they’ve not come up with a name yet, hence why I have to see this woman again. I’m terrified. A friend has kindly offered to be my advocate for the appointment because Paul’s not good at that bit. So tomorrow morning the three of us are off into battle……
So more about the Parish Council and WI……I’m loving both roles. They are quite demanding of my time so I’ve had to give up several other things to make room for them in my head, like some of my Facebook admin roles, but I feel it’s worth it.
I’ve still not worked out what this entry is about, have you?! 😂
In other news myself and Ruth Fidler have begun work on our book! Yep, it’s really happening! It’s due to be released late next year (2020) so keep an eye out for it. I believe it’s available for pre-order on Amazon. 👍
I’ve settled a bit more into life in Nottinghamshire. I still find myself “forgetting” that we’ve moved but it’s happening less and less now. The cats have well and truly made this place their home and, despite health problems associated with old age, they continue to enjoy life. 😻
Things are also good between Paul and I. We continue to have each other’s backs and are really happy. Believe it or not we’ve been together nearly 15 years!!! 😮
So, basically this entry has turned into an update. I thought it might when I started writing but hoped that it would be something a little different. Something interesting and insightful. I shall post it anyway. Yes, it’s a bit dull but it’s all I’ve got at the moment and something is better than nothing. I need to get back into the habit of writing this blog. I hoped that I would share some gems into how I’m feeling about my appointment tomorrow but now it comes to it I can’t dig deep enough for it. Every time I think about it I feel physically sick and my heart starts racing. I just want to speed up time so it’s over quicker. Does anyone have a magic wand for that??? Would be nice! What would also be nice is a shrink who understands PDA and a health system who don’t send those of us with ASD to go and see psychiatrists! After all ASD/PDA isn’t a mental health condition. I hope the next generation aren’t fighting that battle but I fear they will be…..
Right, well I’m going to sign off now and have a nice long shower to help try and reduce some anxiety if I can. I’ll see you all on the other side!
Hi, with absolutely no disrespect at all am I writing this, I have a step son 5 years old diagnosed with PDA, I don’t fully understand the disorder but feel that day by day I’m understanding it more and more, he has intense obsessions with characters from TV series (namely sonic and danger mouse) and at times these obsessions can trigger him if he doesn’t get a toy related to the series he’s obsessed with. I guess I fear that potential ally he could end up becoming increasingly demanding upon things such as this in later life, as for example what happens if he craves a certain car or certain partner? Is he likely to end up having a meltdown over these circumstances? He is only 5 and I understand that but already he gets aggressive and at times violent over situations revolving around toys that we can’t actually find to buy him, is this something that he’ll become more capable of managing in later life? What is the best advice for these situations, as I say I mean no offence at all in what I’m saying, I’m just worried that in later life he could struggle in these kinds of situations, is it just a stupid worry or is there something we could do to aid him in these meltdowns and obsessions?
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Hi. With all due respect he’s only 5. Most 5 year olds have issues around not being able to have what they want. He’s got a long way to go until adulthood and a lot of time to mature and grow. No one can foresee the future of course but I can’t see any reason why these issues won’t stop in time. It’s all part of growing up. You can help this by increasing his self-awareness when it comes to PDA. Talk to him about his condition. Explain it, don’t hide it. Increasing self-awareness really is key.
I hope the meeting with the psychiatrist wasn’t too horrendous. You’re right, treating ASD and PDA like mental illnesses is a fundamental misunderstanding of what’s going on. But I do hope things will change for the next generation – there’s so much campaigning and dialogue that I think it will.
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It went as well as I expected, which was pretty awful. 💜
Well done Julia. What a lot of positive events for you this year, just great to hear in your post.
Wishing you all the best for the appointment today and hope there is some understanding.
Lots of love,
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Thank you 💜
Hoping that tomorrow goes OK for you and that you can relax again a bit after that – it’s good to see you writing again!
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Thank you. It feels good to be writing again even if it is a bit muddled. 💜
Keep your spirits up Julia. You are doing some good things with your life. I hope your adult PDA Facebook group is still thriving. I love that group, but haven’t been on Facebook for about a year probably. Demand avoidance is stopping me from delving into it again. Anyway… thanks for your efforts on our behalf. I appreciate them:
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The Adult Group is still going from strength to strength. Thank you for your kind words and I hope to see you back there when you can manage it. 💜