Long-Term Project Breakdowns

Hello, everyone!

Let's talk about long-term school projects, the bane of my demand-avoiding life.

Many schools (particularly as children get older) set long-term projects to be completed, generally over the summer holidays, much to my disdain. With hindsight, it would have been sensible for me to post this prior to the summer, but hey-ho, better late than never.

The stress these stupid projects have caused me over the years is difficult to describe, but I can confirm that it was awful. It feels like you're strapped into a torture mechanism, which is slowly tightening itself, more and more so until the due date arrives. I feared these projects more than anything. There was no real way to escape them, you've had ample time to complete them, there's just no excuse. The main pressures of these ungodly tasks stem from two main points- quantity, and due date.

You're given a long time for them for a reason; a lot of work is expected, and generally it includes a lot of different sections, making it a more complex demand. They often involve research too, which adds on the demand of finding and using various sources for information, which is also stressful.

The due date also causes stress; it seems so far away, so your child will most definitely waste valuable time, telling themselves it's ages away. However, one of the hardest aspects that I find living with PDA has, is the feeling that there's always a demand that needs fulfilling, and like my mind can never be clear or at peace because of it. This is major with these projects- your child is living with that stress for weeks on end, making them feel even more paralysed by the demand, and struggle to complete it all the more.

Every time I was set one of these tasks, I would tell myself that this would be the time I'd do it early, and 'get it out of the way.' That never happened. I always wanted it to be done early, so that my mind could be clear, and not have it playing on my mind... And that's how I recommend you deal with it, with your child. It will most certainly take away a lot of stress, and a lot of anxiety!

I think the best way for me to tackle such tasks would have been to just work endlessly for days, until it was done. I could never do set periods of time working on things, because in my head, having a timetable is just another way of saying 'regular, infinite demand.' I recommend you help your child break it down into sections, and complete it over as long as it takes, in consecutive days, unless this will send them into overload, and they need time to deal with the stress of this, or if they don't have the concentration.

Your child will most likely see the demand as a major thing, with many layers; however, due to the crippling anxiety this causes, they probably won't be capable of breaking it down into sections, or know how to go about completing it. I was particularly prone to insisting I understood how to complete the project, but I'd put that down mainly to the fact that I didn't want my mum to regularly insist that I should be doing my project, for that was added demands, and my 'demand-tolerating cup' would overflow.

I understood the task, I understood what needed to be completed to complete the full project, but I didn't understand how to get started, or how to approach it in practical terms. All I could see was a massive demand, and couldn't see how to break it down, or how to write the first word, or gather my resources. This is why it is essential that you help your child with this, and ensure they know exactly how to perform the small tasks; they'll struggle, it may be hard to sit them down with you (this always felt like 'facing the demand head-on' for me, like it was staring me in the face), so they at least understand how to practically complete it, no matter how difficult it is for them.

Having it done early will be a weight off their shoulders, and then they can finally be released from the box that this demand has locked them in! I highly doubt your child will think this is the ideal plan, well at least not when you're tackling it... you must offer them a lot of reassurance, talk about how they feel about the demand, and explain that it's 'safe' to comply with the demand.

If your child can work for long periods of time, use that to your advantage! Once they get into the work, it probably won't be as 'demanding' as they thought it would be. For me, doing more periods of work felt like more demands. Your child may be this way too; play it by ear.

Good luck!

Annabelle x

Post-Traumatic Sock Disorder

This is something a little different... Almost a life history of my progress (and lack thereof) regarding demands, how I coped, and certain events that are of significance. It was quite difficult for me to decide to write this, and to post it, so hopefully it'll help at least one person.

I was generally happy when I was very young. The demands were minimal, I could cope with my life, and the few things that were expected of me. Once I got to around the age of three/four, my mum expected my to put on my own socks, and I still remember the anxiety I felt, and I still don't think I've entirely dealt with the resentment. In hindsight, I could see that it was because this was a demand, or as I would now explain it, two demands- two socks, two demands. It hurt my thumbs to stretch the socks with my hands in order to put them on, I wasn't entirely competent when it came to putting my socks on either (these are also sensory issues). I believe that the sensory issues felt more intense as I was so anxious and upset about being left to fulfil this task- I felt trapped. Why would my mother do this to me? Why would she cause me to feel this way? Even writing this, I can feel the anxiety and dread inside me, and I still feel bitter, despite knowing I had no diagnosis, it was a reasonable request (for a child that we didn't know had PDA), and it was an entirely safe thing to do. As the vast majority of people who read this will have a child with PDA, I don't feel the need to explain what must have been going through my mum's head. How could I vocalise the extreme objection I had to putting on my own socks? There was no way, and I could not escape.

Demands in primary school weren't so tragic as to leave me constantly on the verge of tears, however I wasn't particularly partial to the place- it still had enough demands like "everybody sit down," for me to hate it. If you're interested in how I felt about school mornings, see my previous post. I remember demands such as having to line up when lunch was over were a need for extensive planning for me, I had to be in control. Five minutes before the bell rang, I would queue. The demand was less intense because of this, and I was prepared- I had completed the demand within the time limit, without having to rush, and at my own pace. 

As well as being systematically late in primary school, I also had a habit of forgetting to get my 'homework diary' signed by my mum, once in year three. I saw this as an entirely pointless demand, and therefore didn't respect it. I think part of the issue was that because I struggled so much with demands that were of importance and significance, I simply didn't have the capacity to be dealing with this type of rubbish. It was around this time that homework became an aspect of my life; around one piece a week. In order to cope with this, I often found a way to rush my school work so that the work could be completed in the lesson, which somehow felt less of a demand to me, possibly as I was already there, in the lesson. 

Meanwhile, at this point in my home life, my mum decided it was time that I took my own plate back into the kitchen once we had finished eating. Once again, a reasonable request. This again was a nightmare for me- another responsibility, and the demand somehow resulted in my legs feeling like they were the weight of an elephant's.

At school, we were now streamed for maths and English, and being in both of the top sets, I got a little bit more homework. The English teacher for my year group was the Deputy Headmistress, and I was eager to impress her. This resulted in her homework being the homework that I always failed to complete. The demand was more intense and of more importance than other demands for the other classes, as I cared more. And that paralysed me. I felt useless- I wanted to impress her, yet how could I do this when I couldn't do something as simple as complete the homework? The children who weren't nearly as intelligent or as capable as me could do homework, why couldn't I? 

In year five, I had a teacher whom I hated, he was vile. Passive aggressive and rather sadistic, I still rather hope he burns to death. He terrified me. I was more anxious to not be late, and unsurprisingly I was late to school even more often. He told me my work wasn't good enough, or the best I could do. Whilst quite possibly true, the mere pressure I was under was preventing me- I wasn't getting sufficient sleep, I was anxious and on edge constantly, and the last thing I needed to hear was that my work wasn't good enough. I could still tell you the pieces of work which he made me reproduce, over seven years later; that's how significant it was to me.

I had a lovely teacher in year six, who brought out the best in me. She was calm and patient, never shouted, and I didn't feel unsettled in her lessons, so I could generally perform okay. No extra responsibilities were placed on me at home at this point, that I particularly recall.

I somehow stayed off the radar for the entire time in primary school, despite being late nearly every day. I was intelligent enough that they seemed to overlook the other issues at hand, fortunately.

Once at high school, the demands increased, obviously. I felt like I simply lacked self-discipline, for the workload was actually physically and practically manageable. The whole thing is practically a blur. This time, I turned to excuses more than ever. Why wouldn't the teacher believe my elaborate tale of the glass of orange juice that fell onto my beautifully produced piece of homework? I was performing well in class, my work in class was adequate, I was polite and eloquent, they had no reason to suspect anything. Conveniently, I required physiotherapy twice a week at this point, and I'd attempt to meticulously plan which lessons I hadn't completed homework for, and where I should lie and say I had a less academic subject like PE, so my mum would agree to arrange my appointments for that time. 

As well as regular excuses such as illness, so that I wouldn't have to go to school, I would often pretend that I'd put my homework on the pile with everyone else's, and often succeeded, and just pretended to be dumbfounded on the occasions when I was caught. Occasionally I did have detentions for my lack of homework, but I also managed to keep this, and all the homework I wasn't doing, hidden from my mum.

In this time, I developed an obsessive habit with writing lists- I would list all my homework, and all the demands I had to fulfil. I'd write schedules of what time I would arrive home, how long it would take me to get changed, how long it would take me to get a glass of orange juice, how frequently I would have breaks to go to the toilet, and allotted time for the demands. However I was always more occupied with my precious lists than the demands. There would be a colour coding system, highlighting which demands could definitely be avoided, which ones to make excuses for, which ones to try to avoid, and a fraction in brackets, which showed how many of the set pieces of homework I'd actually completed in the month, out of the number that teacher had set.

All of this felt better for me than actually complying with the demand. I contemplated how I could 'injure' myself and make it look like an accident, so I wouldn't have to go to school. I had a list of excuses for various demands, which I constantly added to and amended. I would do anything I could to avoid the demands. I tried to 'practice' making myself sick (with no success), in case there was what I considered to be an 'emergency' in which I desperately needed to avoid school, so I could pretend I was ill.

Eventually, in year nine, my attendance dropped so low that regular meetings began to take place with my parents- the school were convinced the reason for my lack of attendance involved me being bullied, which I wasn't. I tried excuses like "the work is too easy," and anything else I could conjure up, but it was no use. I was told that the police would get involved and that "your mum could go to prison!" I already felt like I was in hell, and I simply couldn't deal with what I was already facing, so my response was simply, "I don't care." I did care, but I felt there was nothing I could do; I couldn't cope with school, and not for academic reasons.

It was at this point that the school suspected that I had Asperger's, due to my complete lack of emotional reaction about the matter. I was extremely bitter, and refused to be tested, as I knew this wasn't the problem! It felt condescending to me, and because I knew they didn't understand me or the situation at all (even though I didn't understand it, I just knew how I felt), I was very resistant and refused to be tested. They kept suggesting I was tested, which made the matter worse. I was on medication to help me sleep at this point, but it permanently made me feel groggy and only half present, and utterly apathetic, and this was the time that I began to physically hurt myself. I was so used to feeling full of adrenaline, due to the constant anxiety from demands, that I didn't know how to cope with feeling nothing, so if I had to hurt myself in order to feel, then so be it.

At this point, my relationship with my mum was far from ideal. She knew I was intelligent and capable, so she thought she was just dealing with a strong-willed and slightly disobedient child. Whilst being passive was my preferred approach, sometimes confrontation in order to procrastinate was unavoidable. I was in so much emotional pain, yet I was still alive, and still living the nightmare, constantly surrounded by never ending demands. I didn't care if she saw my wounds. I partially felt like she inflicted them upon me by making me go to school. I knew she had no choice, but the way I felt overpowered that for me.

In year ten, I started my GCSEs, and things weren't looking up. I was slightly more settled and confident with my demand avoiding techniques both at school and home, which made me feel more secure, but in the meantime, I had the pressure of qualifications. The same anxiety kept building, I kept telling my mum and my therapist (who we have now put a formal complaint in about, as well as the whole local service) that I was losing my mind. I knew I was. I knew I couldn't keep this up, I knew I was depressed, I knew I was anxious, I knew I was deluded, I knew I was paranoid, I knew I was hallucinating. And I certainly knew I wanted to be dead. I saw no point in my life. I got no pleasure out of life as my whole life was centred around facing demands. And demands are everywhere. I hated myself because I couldn't complete the demands. I was a failure, a disappointment, inadequate.

Following several A&E trips after miniature mental breakdowns, I was eventually put in a psychiatric hospital, aged fifteen. There were very few demands here, so I presented and coped suitably. I was an expert at pretending to be normal. I was discharged after less than a month, and back home, where I knew the demands would come again, I took an overdose. Back to A&E. I went to another psychiatric hospital, but the place was abysmal, so my mum took me out of there after six days. The process began again. I went to another psychiatric hospital for around three months, but they were little use, so I decided to come home. Finally, I went back to my original psychiatric hospital for a lengthy eight month stay. By this point the symptoms that came as a result of PDA, such as anxiety, were so pronounced that I couldn't hide any longer. The therapists and doctors, very competent when it came to dealing with their specialities, were moderately clueless as to how to help me. They knew I wasn't well so shouldn't be discharged, but they didn't know what to do. After around four or five months, one doctor in the unit, to whom I owe my life, came across a journal article on PDA, and thought it resembled me, very strongly. Fortunately, it was eventually so obvious that PDA was the answer. I no longer cared about being diagnosed with Asperger's, and went along with it, for I would get the diagnosis that I knew would represent me, the PDA Poster Child. I got my diagnosis very quickly after that, and finally began the process of self-acceptance, and having a reason more substantial than 'I don't like being told what to do.'

I just thought this might be helpful for some of you to properly understand what the process (for me, anyway) is like, living with PDA, and the intense feelings as a result of it, particularly with the lack of awareness. Hopefully it might explain some behaviour in your own child.

Annabelle x

Getting to School Meltdowns

I know a lot about the daily going to school meltdowns- I had one practically every day for the best part of twelve years. Pre-diagnosis, I've walked to school with bare feet, kicked, screamed, cried, made excuses, gone in my pyjamas, and even been naked in the car outside school, and had a teacher come outside and force me to get dressed.

Your child might be the model school pupil when there, they might be extremely intelligent, they might have a lot of friends, and it might elude you as to why they struggle so much to go. As a sufferer, I can certainly confirm that it's more complex than 'getting ready' and going. Here's a (by no means exhaustive) list of demands your child faces before they even arrive at the school gates!

• Go to sleep the night before (despite high anxiety about the morning)
• Wake up (after very little sleep)
• Get out of bed (even though you're about to face your worst nightmare)
• Use toilet
• Wash hands
• Brush teeth (wetting the toothbrush, adding toothpaste and brushing are all three demands here)
• Wash face
• Brush hair
• Put on socks and underwear
• Put on shirt
• Put on trousers/skirt
• Go downstairs
• Make breakfast
• Eat breakfast
• Grab school bag and equipment
• Put on shoes
• Leave the house
• Get in the car/walk to school

Before even getting to school, your child has faced around twenty demands, never mind the ones they'll face when they're actually at school- in a time limit, which is also terrifying, it's no wonder most children with PDA have the school morning meltdowns the way they do. Whilst it's still going to be a difficult process for your child (and you), here are some tips, some of which helped me, and others that have occurred to me post-diagnosis:

• Try to limit the demands as much as possible; is it really that essential that your child washes their face on a morning? Do they really need to brush their hair? Will making their breakfast for them, or making a breakfast they can eat in the car impact on your life that much? Because these simple things make it a lot easier to cope with, as the demand becomes a little less intense.
• Consider the time you wake your child up extremely carefully. I personally, preferred to wake up 30 minutes before leaving the house in primary school, and between 10 and 20 minutes in high school (albeit I occasionally missed my bus). By doing so, I had less time to dwell on the anxiety of the approaching time, and was more in a mad dash to get ready, so spent less time thinking and dwelling, as well as getting a little more sleep, of which I was already deprived- bonus!
• Whilst many schools might not approve or condone this plan, it's something that helped me... Allow your child to be late. Time frames have always been terrifying for me; demands are bad enough, but when they have a time limit, the pressure increases! Once I was regularly around 10 minutes late for school, and grew used to it, it seemed like less of a problem going in. I had anxiety about walking into the classroom late, however it made my mornings feel more relaxed if I knew that the world wouldn't explode if I was a little late. It's more important that your child can cope emotionally and make it to school happier, than being on time and having a meltdown, in my opinion. Be careful though; if given too much leeway, your child may begin to think school is entirely optional.
• Maybe, depending on their age, get ready with your child- I was always so overwhelmed by the prospect of getting ready and going to school, that I felt paralysed. If you put your socks on at the same time as them, it demonstrates that it's safe, and is encouraging and more like a group activity than a demand solely for them.

As hard as it is, and in whatever way your child expresses your distress, it's important that you remain calm, and empathetic. What is happening for them is beyond their control, and they don't know how to express it- they know it's unavoidable. They might be aware that they "don't like being told what to do," but know this isn't a socially accepted excuse, but they may also be completely clueless as to why they're reacting like this. They may try every excuse, to try to appear more reasonable, but you know it's PDA, not that they 'don't feel well.' Try to offer as much reassurance as possible that it's 'safe' to comply with demands, and that it's okay that they feel this way. Ask them if there's anything that would make their morning routine feel more relaxed and easy. Don't offer incentives (see previous post), however maybe going for a hot chocolate in a local coffee shop before school would make them less anxious. Obviously punishments are not only futile but are counter-productive in this situation. 

Good luck, I'm sending sympathy to all PDA parents who have to deal with mornings that were anything like mine!

Annabelle x

The Guinea Pig Trauma: Why Incentives Don't Work

Hello all!

 It's time for a fun explanation of why incentives to follow demands don't work with us Pathological Demand Avoiders! Enjoy!

If you have PDA, you avoid demands, simple. Now, the bigger and potentially more complex this demand gets, the more anxiety you will get about complying with it, thus making it more difficult to follow. So, if you think it's a good idea to give incentives to your child to follow your demands, keep on reading!

When I was younger, despite having OCD, I simply could not keep my room tidy; not because I was particularly messy by nature, but simply because it was a demand. Not difficult, it had benefits for me, I would have preferred it tidy, but it was a demand. When told to go to my room and tidy, I simply could not handle it, I did not have a clue how to cope with the demand, so would just sit around unable to do it until helped, basically. But I'd manage eventually.

Clueless that PDA even existed, my mum said I could have a pet if I kept my room tidy for 3 months! Now, I was absolutely desperate to get some guinea pigs, and was determined to do it- this made everything worse. Once there was actually an incentive but still a direct demand, it was incredibly difficult. It went from a demand to a very important demand that I placed upon myself, too- almost like if a child is told a secret, how they're desperate to tell someone even if they whole-heartedly want to keep the secret, I was completely paralysed by the importance of this and simply could not do it, which made me feel not only at fault for my lack of guinea pigs, but like a failure who couldn't do something simple. This is both debilitating and disheartening for the child with PDA, and certainly knocks confidence.

I was therefore deprived of something I really wanted... and I'm sorry if this comparison offends anyone or if I sound disrespectful, but to me doing this to your child (in my case) is like saying "hey, I know you're in a wheelchair and can't walk, but if you walk just a few steps, really simple, like I can, you can have something you really like!"

Why punishments won't work is more obvious, but equally to be avoided. Your child is already scared by the demand- so scared that they cannot do it, so adding fear to this will get you nowhere, and will just make your child even more miserable, so please don't!

Hopefully my guinea pig deprivation will have been useful to someone!

Annabelle x