Posted in anxiety, Autsim

Down days..

Hola (take twenty – eight) Amigos! 

It’s been a weird several days. I remain in this kind of fake bubble of no emotions. I’m not talking to people, I’m just shutting everyone else out. My mum said today ‘abs I wish sometimes you’d cry when you were upset rather than just being quiet for days’ and she’s got a point. At the moment it very much seems like I’ll be stuck like this forever but I know I won’t. It’ll pass just like every other one has. It’s been stressful – emotions are all over the place and I’m lucky if I get my head to stop whizzing around for 10 minutes. I need a break from it all but it just isn’t possible. That’s the thing with PDA; usually later on in school terms, after the demands pile and pile up,  everything just reaches maximum anxiety level and there just isn’t anywhere else it can go. There’s down days for everyone but we seem to go to a really low couple of weeks until we drag ourselves back out of it. But getting yourself out of a dark phase is a demand so it’s all one vicious and f**ked up cycle. 

I very rarely notice how much my PDA affects me…I guess this is one of them… 

Thank you 

Abigail J 

                              X X X

Posted in anxiety, Daily update


Hola (take twenty – seven) amigos! 

Last night was hard. Really hard. I broke up with my boyfriend of 18 months because I need to put myself first. It really hurts. My whole world feels like it’s caved in around me but I can’t put all my happiness in the hands of that one guy. It’s time to put me first, to sort out my mental health. I’ve broken my own heart and even worse I’ve smashed the heart which belongs to the guy I love. I haven’t written us off forever and I made that so clear. He knows I struggle but he doesn’t know of my PDA, anxiety or SAD. It really kills me to know he’s upset and the texts I’ve received throughout the day have made a sickness form within me that I never thought was possible. I wish he hated me because it’d make this a hell of a lot easier..but he’s too lovely for that. I thought if it was my choice I’d be okay but the guilt is just adding to this undeniable pain that’s circling throughout me like a tornado. The face I saw last with his tears is the only thing ringing round my mind and I’m finding it impossible to focus on something else. However, what can I do? I have to have me time and sort myself out just now. I’m at a low point and whether that’s because of a level stress, it being January’s (doesn’t bode well with SAD) or if it’s just a low point again, I still have to rest and recorporate. My heart hurts like it’s being repeatedly smashed with a sledge hammer but I’ve got to help myself before I can be with someone. My vision is used to being blurred from these tears that don’t seem to stop forming. Have I done the right thing if I feel this low afterwards?

Thing is with mental health problems, how can you accept the love from someone else when you can’t accept it from yourself. 

It’s time to fall in love with myself. And then hopefully I’ll figure the rest out. 

Thank you. 

Abigail J 

                                X  X  X

Posted in anxiety, Autsim

PDA’ers Anxiety..

Hola (take twenty – six) Amigos!

I’ve had a lot of blog posts whirling round my mind recently and I’m not too sure far these resolutions are working perfectly though as I’m sticking with my blog and even if I’m not posting everyday I’m replying to individual emails and thinking of new ideas. Another new years resolution was for me to not bite my nails and I also haven’t done that since last year (although only 16 days ago this is still a very proud time for me) So as I’m typing this up I’ve got freshly painted nails and I’m feeling on top of my life, for now, atleast.

I guess one thing I wanted to touch upon was the idea of teachers and their perspectives of PDA. Many believe that there’s an extreme avoidance of demands due to the desire to be in control of a situation, don’t get me wrong all PDA’ers beg to be in control of anything they’re put into but it’s not quite as simple as that. My teachers in primary school were always made aware of my PDA and because of this they’d but me as ‘team leader’ in group tasks thinking they were helping me out but infact it turned out quite the opposite for me – I hated it. As much as we want to be in control of our own situation it doesn’t mean that we all want to control everyone else around us. I know the severity of controlling others comes across differently in each different case – as does everything else – but it’s not always as common as one might seize to believe.

Since I remember I’ve craved to be ‘normal’ to be hidden at the back of the room when everyone else desires to be in the centre. I’ve kept the anxiety building up all day just to come home and cry myself to sleep – my best way of relief. I’ve never made a show of myself anywhere but inside my home because judgement is my biggest worry. The thing with PDA is it very much goes one of two ways – you either crave to be the centre of attention or to be in the back where no one notices you; it’s always black or white, it’s never grey for us. It’s always an obsession or we’re not interested.

On that note, so many times parents have got in touch with me and we’ve spoken about how their child fought with their life for something to then get it and not seem the least bit bothered. It’s so easy for us to get an obsession, to want a certain something with all we’ve got to then get it and be bored. I think for PDA’ers it’s the determinism that keeps us fighting everyday, it’s the battle that goes on between our minds and our hearts. We don’t want to face any demand yet we do, every single day because what other choice do we have? I think it’s vitally important that we fight for whatever we want, even if we give it all up after.

The determinism inside us gives us the strength that others don’t necessarily have because when you’re battling and fighting with the brain that controls you everyday why do you want to be in control? why do you not want to be in control? That’s where we differ; some of us want to get rid of this sudden possession of control when it’s given to us because we’ve never had it and some of us want it so bad just to get a taste of what it’s like to have that control placed in our hands.

And I really do believe at the end of the day that is where every single person with PDA mostly differs, it’s the complete ignorance of power or it’s the everlasting wanting for it. Is it the anxiety that makes us want to be able to control the PDA or is it the PDA that begs for us to control our anxiety. Either way we are all fighting for a release from a brain which constantly argues with simple everyday tasks. Many teachers, social workers, psychiatrists etc all believe that our want for controlling demands is because we like the feeling of being in charge, but perhaps we just like the idea of the anxiety leaving us for a while we focus on other tasks.

Because does anxiety trigger the worse days of our demand avoidance or does demand avoidance down days trigger the worst anxiety?

Thankyou – (you know the drill by now)

Abigail J

 X X X

Posted in anxiety, Autsim

PDA traditions (for me anyway)..

Hola (take twenty – six) Amigos!

I seem to be endlessly drafting blogs at 1am because that’s when my writing mind seems most alive, draft after draft I delete trying to use the perfect words to sum it all up. The conclusion is though how do you sum up things you don’t fully understand. Does anybody fully understand PDA? Or is it an ongoing battle between the mind and the demands that are faced to us everyday? Is there anything that eases it? If only time could help it fade. It’s hard to sit down and condense all your thoughts into one post when there’s so many questions whirling round your mind on a daily basis. I guess for the last couple of days though I’ve been trying to piece together my personal childhood experience with PDA.

This all started when reminiscing and looking through all the old family photos with my boyfriend (although half the time he got bored and paid no attention to me aww’ing and coo’ing over memories that were so long ago yet so distinctive in my mind) thing is, I’ve always had good memory, there’s moments I can remember from long long ago, but some bits in particular stay most prominent. It’s almost embarrassing to admit this but by now what have I really got to lose?

My childhood started off on a whirlwind of adventures for both my mum and dad who’d parented my 2 older siblings before getting to me and thinking where the hell have we gone wrong? Thing is I created challenges for them that they never expected, made them develop in ways that cannot be imagined and made them make decisions that weren’t easy..but did I know it then? Nope, of course I didn’t. Every parent or guardian knows the weird and judgemental looks your child (especially those with autism) can get; kids walk past glaring because they’re doing something different and even fully grown adults think they have the right to question your parenting style when they just don’t get it. This happened to my mum with these few things in particular…

I had my ‘ninny’ aka dummy aka pacifier aka I don’t know just that thing babies suck from when I was born until my 7th birthday. Yep, it’s true, until I was seven. I know this seems insane and I can imagine the thought process going through your mind right now but for me? It stopped a crazy amount of anxiety. Mum tried on numerous occasions to help me get rid of them, one Christmas Eve when I was 4 I gave them all up ready for the elves to take away with them..only problem is I was so scared of Santa and my anxiety was so high I needed the ninny back that could calm my deepest of nerves. (Me being scared of santa is a different story for a different day – I cannot stress enough how badly I dealt with dressed up people and to this day that phobia remains) after this mum tried and tried to help me get rid of this little sucking thing that was starting to get embarrassing for her and I. But it was just hopeless. I needed it, as much as my mum needed me to calm down, as much as the night needs the moon, I needed that ninny to stop all those anxieties creating a tornado in my head. It was at 7, when I finally gave it up, one day I walked downstairs with all of them in my hands and handed them over..needless to say I don’t think my parents quite believed the sight they were seeing in front of them. Not only was I giving the one thing they thought I never would give up without argument (finally!) I was carrying about 30 dummy’s in my hand, considering I slept with 4 every night, which I physically still don’t understand how is possible.

Another thing I held onto, until an ‘abnormal’ age was my pram. It was an older kids version obviously but within that little seat I could hide away. It was a major deal for me and at the age of 2 I knew how to pull the prams hood right down and hide from the world, which is what I did until I was 7. The thing is with PDA, if the demand is to stop doing something it makes you reluctant to give this one thing up. I always hear mum say now ‘it just wasn’t worth the fight with you’ which makes so much sense I guess, I would fight all day with her about important stuff, at the end of the day what’s the problem with a pram and a dummy as long as you can deal with the judgement. Luckily I didn’t see the beady eyes of judgmental a**holes as I had the hood pulled so far down all I could see was the navy blue chequered pattern it held above my eyes. It’s so weird to think that the prams seat was also like my cave; my hideaway from the rest of the world. Sometimes I would do anything to be pushed around in that again without any eye contact to the rest of the world but reality hits and at 16 I really can’t afford to be in a pram and I most definitely wouldn’t even want a dummy now.

Did anyone else have little things like this that elongated more than ‘usual’ children?

Another thing which is slightly different but also common in many autistic children was my inability to smile. Back then all my school photos are of me screaming and crying my eyes out which even breaks my heart to look at. But when I was genuinely happy you cannot tell by the awkward emotion shown on my face. I struggled so much to smile and that clear distinctive smile didn’t really come on until I was 8 if not older. I realise how unusual this must seem to people who caught on how to smile since they were 6 months old and laughing with their parents as they repeat the sounds ‘mama’ ‘dada’ while pride bursts out of the parents eyes all condensed into laughs at the precious little bundle of joy that lay before them. But for me? It was virtually impossible.

I guess looking back through old photos has made me realise the different things I did to the usual life of children the same age as me. With a pram and a dummy still  attached to me when I was well into my seventh year it makes you wonder why I had such a connection? Why did them two things bring me such a relief? It was also nice to see my boyfriend not question it – although knowing my anxiety is bad which was my excuse for my ninny he doesn’t know the rest. I imagine at the time I had countless weird looks and many times my mums parenting was scowled upon, but perhaps it is worth noticing that ‘some battles just aren’t worth fighting’ (especially when a child with PDA is involved).

I guess what I’m trying to say is pick your battles correctly, sometimes it’s easier to lose and have your peace of mind rather than making it harder for the one on the autistic spectrum. Especially those with PDA who suffer terribly from all the demands given in a usual everyday setting.

Thank you – email me for any advice, tips or just a friendly ear to listen.

Abigail J

X  X  X

The learning of the smile.
The dummy and pram (the worst part is I still nap like this now)

Posted in anxiety, Autsim

PDA symptoms..

Hola (take twenty – five) Amigos! 

How good am I getting with my updates – moment of appreciation please!! I’ve heard lots of feedback from many parents of those with PDA and I’ve felt extremely helpful this week so please don’t panic about getting in touch with me if you have questions lingering. It means a lot if I can help and I usually get back to emails on the same day! 

The most often people I’ve heard from is those who’s child is going through the ‘PDA diagnosis stage’ one that is of course a struggle. Some are asking the type of ‘symptoms’ that seem common so today I thought I’d get it all out on here. 

Biggest symptom of PDA – of course, self explanatory – is the extreme avoidance that your child experiences when faced with a demand. This can be dealt with in different ways. When I was younger being told to simply ‘eat’ ‘put my shoes on’ or ‘go to bed’ sent so much stress into me that I was unable to function. My mum soon realised this was working against me and started using games. I still remember to this day ‘get your PJs on and see what letter in the alphabet I get up to’ I’d then rush upstairs and try to get back down before she got to G, which was almost impossible I won’t lie! When it came to eating I had the average bob the builder and Tweenies plates with my food on and mum would say ‘oh what’s the picture underneath abbi?’ And I’d eat so quickly that mum would see the picture within a minute of asking..of course it was always the same picture but it very much worked for me. I definitely recommend turning the demands from imperatives to a game as this helps the mind relax and your child won’t feel forced into doing something they don’t want to do. 

Another very common symptom – high levels of stubbornness. Many parents whom have got in touch suggest their child’s stubbornness when being asked to do what they don’t want to. This, of course, could be confused with the genuine actions of a child but those with PDA will see an amount of stubbornness that you never knew existed. This is when many struggle with what to do, the best ways to overcome this is to make sure there’s a fun activity that they want to do after they’ve done what they don’t want to do. When I was younger and my mum took my to the ‘special’ dentist they were sure they would get me to open my mouth saying that no one had beaten them in 30 years and guess who beat them? Me. Although, funny now, just goes to show many don’t understand the seriousness of PDA and how they can be stubborn. It took me until I was 8 to get my mouth open for a dentist! Another time when I went to sensory class due to my hatred of touching anything that looked slightly different, such as jelly, sand etc. The woman again promised there was nothing wrong with me and I’d touch the food after a few plays with some toys. Me, yep me as a 2 year old, picks up my plastic chair and sits on the other side of the room. Lesson: never underestimate a child with PDA when it comes to their stubbornness. 

In turn the anxiety goes to anger. Of course those with any type of autism struggle more with their anxiety and it’s no different for those struggling with PDA! After simple demands causes us to feel like our head is in uproar it is no surprise that anxiety can be extremely high. Especially after a day of doing something they really didn’t want to – this could be a hospital appointment, school, going somewhere or even something as simple as having an argument with someone. This only encourages anxiety until the PDA’er will go into automatic shut down and it will either result in anger or sleep. 

Lucky enough for my parents after a stressful day I shut myself off and sleep but there will be many who will turn to anger. Ways to deal with this? Ignore them. Don’t give them what they want as that teaches them stropping will always work, it may seem easy at that time to give them it just to shut them up but when possible I highly suggest ignoring them. Once you shut them out and carry on as if it’s not happening they will either scream themselves to sleep or realise they’re getting nothing out of it! 

You can tell if your child has PDA by an automatic shut down when any demand is mentioned, even those simple ones that seem stupid to be angry at. Some people’s brains are wired up like that and you just have to accept it and find ways to cope with it. 

I hope this helps to all the parents who are emailing me currently. 

Thank you!

Abigail J 

                              x  x  x

Posted in anxiety, Autsim

New year, new me 

Hola (take twenty-four) Amigos! 

Would the blog be in true abbi fashion if I don’t apologise 73772 times for leaving it so long. I know I know it’s bad and I’m sorry but ‘new year, new me’ and all that and as I’m now an English lit a level student it’s time I get my act together. 

So believe it or not a lot has happened in this very long time since I last updated. About the job I put last time..well yeah I quit it before it even started. The night before I completely freaked out and had to quit. Too much too soon I guess, I’ll figure it out but right now I’m not in the right mind for a job. And at first the guilt made me feel awful but over time I’ve come to realise that sometimes you have to do whatever makes you happy and at the moment having a job would add stress with demands and PDA. 

Other major news I’ve now told 4 real life people about my PDA! They’re my closest friends and I did it and not once did I get a funny look. I had the most amazing support and they couldn’t even believe it. I was called brave and what not and even though I don’t feel brave because those with PDA know that you just have to get on with it, it was so nice to know that I wasn’t judged. If anything I feel so much more comfortable knowing I can speak to someone about it when things get tough. So if you haven’t told anyone or you’re debating telling them something that seems like a major friend breaking deal, I promise you it’s not. It’s the best thing I’ve ever done. And if you lose friends because of them..they didn’t deserve you in the first place! 

Thirdly, new year aye! Time to get everything back on track. Today I ordered the ‘happiness planner’ although £40 is a hell of a lot of money there’s an app that’s also free called happiness planner..which I recommend to begin with! It’s basically a diary but with special pages where you set goals for in 10 years, 5 years, 1 year and even 1 months time. Everyone says every year they’re going to get their life together and does it ever happen? No. But this year it’s time to get back to the gym and sort out both my mental and physical health out.

Thank you! Sorry for a rambling one. I’ve got the app on my phone so will keep short snappy updates from now on. 

  Abigail J 

                                X   X  X

P.s if this isn’t hope that this blog will be updated regularly this year I don’t know what is. New email just for blogging and helping anyone. It’s so I can check on it regularly without seeing all of new looks new offers etc. Please email me on that one as others I might not see!