PDA fae

Category: adhd

  • Second day of leave

    NOTE: THE CONTENT OF THIS POST IS ALTERED BY A BIPOLAR MOOD EPISODE, AND DIFFERS FROM MY USUAL POSTING STYLE

    Wow, life with bipolar and PDA is hard.

    Life with bipolar, PDA, chronic pain, scoliosis, chiari malformation, probable EDS?

    Yes. Very much a disabled adult here. At the time I was under the RNOH, EDS was considered “zebra” – looking for zebras, when you hear hoofbeats and not thinking “horse”.

    I dislocate far, far too easily. I have congenital scoliosis. I had a brilliant surgery on my spine at 20 years old, and as a result am around 1-3″ taller than I would have ever been (genuinely not sure, people guess my tallest to be around 5’2″, I was 4’11”?) Standing tall as I can, I’m now about 2cm taller than I was – 150cm.

    Dyscalculia, I’d guess that makes my full height 5’1″? Yeah who cares lol. Doesn’t matter – I’m teeeeeny. Suffice to say, I’m 34, and full of disability.

    My honest advice, on this time to talk day, is: ALWAYS keep an eye on mood disorder symptoms in your kids. Do not assume ‘oh this is rejection sensitive dysphoria’, ‘oh this is PDA’ ‘oh this is ADHD’ ‘oh this is teenager time’. All kids are at risk of depression at the very least, all kids are vulnerable to abuse – of any kind, from anyone – and honestly, psych wards are a last resort type of place, for people at risk of SELF-neglect.

    You don’t want your 19 year old in such a place, trust me, let alone your vulnerable 24 year old.

    You definitely don’t want your teenager in a CAMHS unit.

  • Choice: an update

    I wrote this on November 1st 2022:

    In a previous post, I asked ‘what does healthy look like for a PDAer?’

    My therapists opinion is that healthy looks like having choice. Freedom to choose to avoid or comply, rather than being ruled by nervous system activation and trauma responses.

    I suppose that means then, that it must always be an option to say no. There’s only true choice if you have the freedom to choose to refuse. I often don’t trust that there will be that freedom in interactions with other people, because so often growing up it was absolutely not an option. Perhaps practicing saying no more frequently would help me trust that I can do that.

    I wonder if I learnt to say ‘No’ more often, if it would help me choose to take on other demands in life as I’d feel more in control.

    Two years on, I’ve made a lot of progress with this. I still find people don’t always listen to a no, but I do make an effort to say it more often. I also use AAC (augmentative, alternative communication) cards on a sunflower lanyard, and my PDA flipchart to explain my drive to avoid.

    The biggest difference I’ve noticed however, is in my avoidance of obligations. I can now ask myself “do I choose to avoid or to do this task?” and that makes a big difference, because often I’ll say: “yes I choose to do so!”

    But not always. Sometimes I say “no I choose to not do this” and allow myself to choose avoidance. I find this offers the most autonomy – being driven to always avoid is not autonomy nor control: it’s being reactive to our surroundings, always.

  • Post solstice hygge

    Gosh I had a lovely “hygge” tonight with family. Hygge is a loanword from Danish, meaning a dark night, twinkly nights, good company (and good food and alcohol)

    Me and my mum cooked a starter and main, we had cheesecake, or cheese and crackers for dessert, so many snacks. Played a runthrough of a new board game I had in my yule stocking (a personal tradition), and a general knowledge quiz to finish up.

    I’m leaning into Christmas in a big way this year, as it’s the most normal Christmas I’ve had since 2019 (covid, mania, supported housing, mania, all got in the way of “normal”). It’s so nice to be well enough to be at home, to host an event even if prepping was so super demanding it took me 8 hours to complete getting ready (due all the the demand free time and pacing needed to cope).

    That’s the essence of a PDA christmas – you do it your own way. Lean in, or avoid most of it. Do it but in an unorthodox way. Adhere religiously to the rules of Christmas. Cling film wrapped presents.

    Whatever works for you, and the PDAers in your life.

    What worked for us mainly was that I set a “no expectations” rule – aside from no shoes in the flat. Other than that, we didn’t expect things of each other, and everyone was much happier. We made our own drinks, we did what we offered to help with, we’ve left the washing up for me and my carers to work on tomorrow (within reason).

    The Yuletide magic that I’ve been waiting for!

  • New homeschooling legislation

    I just heard this discussed on the radio 2 early breakfast news broadcast: new legislation stating parents won’t be able to homeschool if their homes are “unsafe or unsuitable”.

    Sounds great to the general populace, but do we know what that will mean in practice? Will PDA sibling interactions, or meltdowns come under “unsafe”? Will PDA accommodations lead to a decision of “unsuitable”?

    Now, this is all conjecture on my part, but I am worried. I hope the PDA society will have thoughts on this and ideas on how to support families through this shift – or better still, reassurance that this won’t affect our community!

  • Avoiding an ATU as a PDAer

    Ways NHS 111 have supported me:

    The moment I tell them ‘bear with me I’m autistic’ they do know how to alter their communication. If you’re lucky enough to have a diagnosis with a PDA modifier, they actually do have a degree of understanding of what that means.

    They will likely still be quite demanding to call – but if you are facing a dangerous crisis and don’t fancy heading to hospital, try and meet them. They take the “least restrictive option” and as in my case, can treat you in your own home.

    It’s best to lean on friends and family, but if it’s the middle of the night and things have *worsened*, call 111 every time something gets worse. Short of that, SHOUT is textcare, and there are multiple email support lines: saneline, samaritans being just a couple. There’s loads of suicidal crisis lines, papyrus, CALM, samaritans – but these need you to be actively suicidal. You can also contact the PDA Society helpline if you need PDA specific advice – but they are not a crisis line and will respond at a delay. The NAS also have webpages on where to turn in crisis – I would link but the website is currently down.

    Yes! All of this is demanding!

    BUT: all of this is better than any length of time in a psychiatric unit as a PDAer. They are restrictive, demanding beyond belief and very controlling. If you need to be in one, they’ll help – but if you can do any of this and stay at home, you’ll keep your control and autonomy.

  • Friendship gets easier with practice

    Recently I made a post on my instagram about one of my biggest autistic traits is difficulty making, and keeping friends. I’d now state that as biggest PDA trait – but also I’m finding that contact with 111 option 2 is helping me shift my communication, boundaries and locus of control.

    That is to say, I am more aware of what I can control and what I can’t – which really helps with intolerance of uncertainty. It also reduces the anxiety driven need for control.

    I am also better able to stand up for myself but also take responsibility for my own actions, because 111 definitely expect that of you. Once you start doing that, they are very able to work with PDA and autism, actually. They will adapt their communication, and expectations as far as a non-autism specialist service can.

    The outcome of all this is that I am much more selective in who I keep in my life – which makes for friends who actually want to check in on me and see me in person (which as a socially motivated PDAer, I need! )

  • Neutral

    I made a post on my instagram about how sometimes I do not like being neurodivergent. Recently I’ve been struggling with being autistic, ADHD, (likely) dyspraxic, dyscalculic – and especially, bipolar. That it feels like it just makes life more difficult, causes more struggles and loneliness.

    My journaling tonight leads me to reflect that I would not wish for my neurokin to be self-hating.

    So I asked myself, are there good things to being different in this way. Maybe right now I’m just not seeing them, because I’m finding it really hard to create an answer to that question that lists any positives.

    But if I don’t want my neurokin to be self-hating I shouldn’t put that on myself either.

    Maybe then I can take a neutral stance, like I’ve seen many others adopt. That neurodivergence can just be neutral. It just is. It’s ok that it is, it’s a variation that is, that happens.

    And it’s ok.

  • Module begins

    It’s the first week of the module, and I’m a week ahead. That’s because the website opens before the module commences, not because I’m superhuman and studied two weeks in the first week of term.

    It definitely feels better to be a week ahead. There’s less sense of pressure, and if I can keep up this way, I can take a rest week if I need to. I’m not sure if it’s going to be possible to get any further ahead with this module. Every week involves a lot of notetaking, so cramming two weeks into one would be very intense.

    I feel more confident now that I’ve managed a week of study in an actual week. Prior to the module starting it had taken me two or so weeks to complete the first weeks study – I think having the actual time pressure helped me register the importance.

    I like that this module moves frequently between sciences, that will keep my brain engaged and curious. I have to think about it little bit by little bit, because thinking all the way to May makes me feel rather overwhelmed. Instead, I’m trying to think in terms of tutor marked assignment (TMA), by TMA. Taking each one in turn, and focusing on the work each one needs as they come up.

    The TMAs on this module are lengthier than I’ve been used to on my previous module – rather more demanding! With gentle self care, perseverance and persistence, I shall tackle each one with mindfulness of demand anxiety. I foresee a lot of demand free time in my future!

  • Gamification

    I use this a lot to help me get tasks done. It involves turning activities of daily living into a game – scoring points, getting rewards (if that works for you), growing a character, going on quests.

    I find the best rewards for me are ones that aren’t part of the real world. For example, I use Finchcare, which is a little app with a finch, where the rewards allow you to dress up your finch, or decorate their little home. It’s not pushy – it does ask you to set a streak, but this feature is pretty ignorable. It doesn’t nag you to complete tasks, you can turn notifications off, it just celebrates what you do get done. I have tasks that are just there to be avoided, if I’m honest. If you’re interested, and would like to start with a micropet, my friend code is F9AQBHSE5D.

    The other main form of gamification I use is Habitica. In this one, you have a little pixel character, that again you can earn ways to dress them up. You can also set real life rewards, if that happens to work for you. There’s also quests to go on, to defeat monsters. This really helped me for a long time to carry out cleaning, and such tasks. I might use it again to encourage myself in my studies. I do tend to set fewer dailies, because these give damage when not completed, which can become demanding.

    I find the novelty of a little game a good way to work around perceived demands. It especially helps when there’s little to no consequence to skipping a task, but a boon to completing it.

  • Ambitions, are they possible?

    The town I’m currently in had a volunteering festival today. For me to be accepted onto the courses I’m thinking about for post-graduate study, I really need to be doing this sort of thing.

    That said, is it even going to be possible for me to undertake post graduate study?

    I am going to be able to maintain volunteering commitments?

    Will I remain well enough? Will it be too much for a demand? Will it become too difficult to reach locations, given that I can’t drive? Do I remotely have the capacity to do any of this?

    And how do I have a meaningful life if I can’t? How do I avoid sinking into depression and feeling like a failure?

    Sigh. I really hate being disabled sometimes.