Me, Myself and PDA

I know it’s only been a few days since I posted up part 5 but I had such an amazing response when I asked for questions that a part 6 was a must! I’m currently working on a part 7 too! WARNING: contains swearing. 😇

Nicola – My son seems to have an issue with personal space. He is always complaining about being bumped when no one else has seen it but he gets too close. Do you have this tendency too? I am not quite sure how to help him with this – the “there, there” approach doesn’t work at all!!

This question made me smile – not because it’s funny but because it could have been written about me! As a child I was very “in your face” – I had no concept of personal space and was always invading other people’s. I can’t remember if I complained about people bumping into me as a result of this but I would imagine that I did because, at times, I do that now. I’ve always been a “physical seeker”. I love touch. I love hugs. Paul has to wingle (my word for tickle) my feet every night before I can get to sleep. Oddly enough though I can’t bear it when people invade my personal space, like in busy public places when they stand/sit too close but this also sometimes happens when people I know well sit too close. It all depends on how my anxiety levels are at the time. I don’t really know what to suggest regarding how you can help your son because I’ve never had any help myself for this side of things. Perhaps you could ask your doctor to refer him to see an Occupational Therapist? This is something I’m looking into for myself too. I’m just sorry I can’t be of more help. 💜

Karen – Did you swear much as an 11/12 yr old in anger? If so, any suggestions as to try and reduce it? Also, my son is often talking about killing himself and wishing he was dead, do you have any advice that can help with his low self-esteem?

Firstly huge hugs to you Karen. 💜 Yes I did, and still do, swear an awful lot and not just in anger or meltdown. I think it started before I started school with the odd word but as I matured the swearing increased. I would tell teachers, and just about everyone else, to f*ck off, for example. I don’t really know what to suggest for strategies to help reduce the swearing – remember any suggestion of “let’s try and use a different word instead” might be met with avoidance. I know this doesn’t make it okay but a lot of people with an ASD swear more than I would say is the norm, especially those with PDA. I use swear words not just in anger but as descriptive words to add emphasis to something, ie. f*ck me that cake was nice or that was a f*cking good film – I do this without even realising it. I can now hold back from swearing if I’m around someone who finds it offensive or if I’ve only just met them so I guess that’s the only positive I can give you – I’ve learnt to monitor it, but this isn’t the case when I’m angry I’m afraid. To answer the last part of your question all I can say is that feelings like this are pretty common for people with PDA. I’ve had similar feelings myself, especially as a child. I think it was partly down to feelings of guilt over my actions and behaviour, feeling like a freak who couldn’t fit in and huge issues with feeling like a failure but I also think that the way I was “mismanaged” for such a long time played a big part in these feelings of worthlessness. Even though I was very much loved as a child and my mum did her very best she didn’t know about PDA so therefore the strategies she, and others, used were the wrong ones. My advice to you would be to talk to your son about PDA as soon as you think he’s ready to know. Be as open as possible. Keep it positive though and try to avoid using sentences like “there’s something wrong with you”. Try to focus on the positives as much as the negatives. Make sure he understands that he’s not alone and that it’s okay/not wrong to feel the way he does. I know that might sound odd but those feelings are very real to him and simply telling him that he shouldn’t feel that way isn’t going to help. As children we often experience some very adult emotions and feelings, especially when it comes to realising we are different. The trick is to get him to a place where he sees that difference as a positive. You might also want to get a copy of Ruth Fidler’s new book – Can I Tell You About Pathological Demand Avoidance Syndrome? It might not be something that he’s interested in reading just yet but it would be handy to have it on standby for when he is ready. If you feel he needs to talk to someone then he can call the Samaritans. They take calls from children too. If you are concerned in anyway that he might act on these feelings and thoughts then you must seek medical help/advice. Hugs to you. 💜

Maria – Did you always remember your meltdown as a child? Do you remember them now if you still have them? How did you feel after them? I’m trying to get inside my daughter’s head because she is not speaking at the moment but when I ask about them she looks blankly at me as if she can’t or doesn’t want to remember or she screams at me so I stop asking.

That’s an interesting and difficult question to answer Maria. Looking back I would say that about 50% of the time I didn’t remember my meltdowns at all but I couldn’t say with any certainty that that was because I couldn’t actually remember them or because I had blocked them out, or perhaps it was a combination of both. Maybe it’s a bit like the “red mist” that you hear the perpetrators of domestic violence speak about (?) They often state that when the mist descends they are unable to stop themselves or remember what actually happened. When I think back to the meltdowns that I can remember as a child all I can remember are feelings of being out of control, guilt, shame, embarrassment and extreme sadness. I hated hurting others and I hated knowing that I had often done so – I found that a great burden. I wanted so desperately to be “normal” but no matter how hard I tried I just couldn’t be. It took me a long time to realise that it’s okay to be different and that “normal” isn’t all it’s cracked up to be anyway! Yes, I still do have the odd meltdown now and yes I do remember them all. As an adult I think they affect me emotionally on a much greater level because I’m now fully aware where that kind of behaviour can lead and that it’s not the answer. I would say that my last physical meltdown (throwing things and screaming) was about 6 months ago. Mostly my meltdowns now tend to be more internal – feelings of mild depression/crying that might only last for a couple of hours. For me I’ve found that after a stressful event* I need to sleep, if only for a few hours, I find it helps me manage my anxiety levels much better so that I don’t have either type of meltdown. Most days I have an afternoon nap – for me it really does help. I’ve always found meltdowns to be extremely exhausting, both physically and mentally. They really do take it out of me and as for the aftermath of emotions and feelings that they leave you with that can be worse than the actual meltdown itself. Many people think that once the screaming and crying is over then that’s the end of it but I think that’s just the beginning – 80% of the meltdown happens without anyone else even realising. That’s why it’s vital that people give us space to recover before they punish us** or talk things through with us. As a child I wasn’t keen on talking about the feelings associated with meltdowns or the actual meltdowns themselves but as a teen and adult I’ve found this process much easier. Don’t be afraid to talk to her. 💜

* What I consider to be a stressful event: meeting with a friend either out or at home, shopping, all parties and gatherings, days-out and trips to the doctors/dentist….so basically every event, good or bad, that most just “do” without even thinking are stressful to me. Sometimes a nap just isn’t enough for me to recover so a day or two off from demands is needed so I can regain control/manage my anxiety. It all depends on the length of time I was “socially exposed”. Most meltdowns aren’t caused by any one single event but more an accumulation of triggers/exposures.

** I in no way advocate the punishment of a child with PDA who has had a meltdown. By all means talk to us, explain why that behaviour isn’t acceptable and help us to understand why we do the things we do but remember only when we are calm. This might be many hours or days after the actual meltdown. Tradional forms of punishment do not normally work and in fact often do more harm than good – would you punish someone who had seizures by shouting at them, taking away their iPad and sending them to their room???

April – I wonder when you began to ‘mellow’ out and realise that yes, you have anxiety (asd based/control etc) BUT that actually life can’t be controlled and life does indeed happen. Does that day ever happen when the need to control everything around you actually subsides somewhat and anxiety/control is not at the forefront of everything?

Good question April and there’s no easy answer. I think the reason people believe that I’ve mellowed with age is because I’ve learnt to internalise a lot of my anxiety so it doesn’t show on the outside but that doesn’t mean that’s it not still raging inside – far from it in fact. I’ve also become quite the expert at pretending to be okay/managing when in fact nothing is further from the truth. PDA is very much a hidden disability, especially in adults – if you and I sat and had a 5 minute chat then you’d have no idea that I had PDA – you might just think I’m a little quirky. It would only become apparent after you had spent some real time with me and once I felt comfortable to drop the pretence. I don’t feel comfortable letting strangers see the whole me. I’m well aware that life cannot be completely controlled and I think I always have been to some extent, that doesn’t mean however that I’m happy with that – in fact it pisses me off daily! Lol. In an ideal world I would be able to control every aspect of my life but I can’t and I’ve had to learn to focus on controlling the aspects of life that I can control/influence, like my home environment. That’s why I feel so comfortable at home as apposed to outside. My being able to control my home life has meant that my daily anxiety levels are much lower than they used to be meaning that any “surprises” are unlikely to push me over the edge. Anxiety and control will always be at the forefront of everything I do. 😕

Stella – A big one for you Julia; when you are getting anxious what would you like someone to do to help you? All I want to do is hug my daughter when she’s like that but she hates to be touched, it just makes it worse.

For me it all depends on how anxious I’m feeling and what my trigger was, for example if Paul and I have had an argument then I usually just want him to leave me alone but if my anxiety has been raised by some external force then it sometimes helps if he gives me a quick hug – nothing too over the top, more of an acknowledgment of how I’m feeling. If my anxiety is very high then no amount of comfort from anyone will do any good – in those situations I’m very much like your daughter, I like/need to be left alone – I can’t bear to be fussed over as it seems to increase the anxiety. I know it must be hard to see your child going through this but space is sometimes exactly what’s needed. After I’m calm again then there’s nothing better than a hug. What works very well for me is being able to self-manage. When I’m in a stressful situation that I’m beginning to find too much then I will either work through my anxiety but if I’m unable to do that then I leave if I can. I will often just go and sit in the car or tell people I need to get home for the cats etc. That’s easier than explaining the real reason, which is very hard to do when I’m in the grips of high anxiety. Paul is aware of the subtle clues from me that I’m not coping and need to leave but if for some reason he’s missed them I just simply tell him I can’t stay here anymore and I’ll wait in the car. Sometimes just removing myself temporarily from a situation can be enough to reduce the anxiety build-up so I’ll often just pop outside for a quick cigarette and then I’m able to return. I hope this answers your question but if it doesn’t then do please leave me a comment. 😊

Nicky – I was wondering what you might say to a younger you? I’m not sure when you were diagnosed, nor what your first successful coping mechanisms were; but you must have come a long way since then, and learned a huge amount about how to make more sense out of the world on your terms. What messages or tips would you wish that you could have told yourself back then?

I was diagnosed with PDA at the Elizabeth Newson Centre in 1995 when I was 12.5. I have come so far since those early days and I still continue to do so. When I look back and remember the me of then it’s hard to believe that we are one and the same. I feel sad when I think of that confused, violent, misunderstood and lonely little girl who was just trying to fit in and make sense of things that seemed so alien to her. I think if I could tell the younger me anything it would be that everything will be okay and that I won’t be lonely forever. Life can, and is, good. I am loved and live a fulfilling life. I think that had I known that when I was younger it would have helped me massively. Perhaps I wouldn’t have travelled down so many dark roads looking for love and acceptance in all the wrong places. Then again if you think about the flip side of that, if I hadn’t experienced all that I have then perhaps I wouldn’t be who I am today. Perhaps if I had known that it would all be okay in the end I would still have chosen the paths I did but things might not have seemed so bleak and hopeless. As far as tips go I wish that people had spent more time making sure that I fully understood PDA. I think if I had had proper awareness sooner than I did I would have come further sooner, does this make sense? 😕

Thank you all once again for submitting questions. I love doing these blogs so please keep the questions coming! 💜

Please click on the following link to read the other YOUR PDA QUESTIONS ANSWERED

It’s been a while since I did a “your questions answered” post – today I cover self-harming, anxiety and friendships, amongst other things. I hope you enjoy. 😊

Sue – Have you ever cut yourself just to get a plaster or bandage? My son will threaten to cut himself and I know that’s for a reaction but this time it was different – he said he needed to have a cut to get a plaster. I said he could have a plaster anyway but he refused and said no – I have to have a cut for a plaster.

This is an interesting question. The short answer is no I never cut myself just to get a plaster. The longer and more detailed answer is I that did fake injuries that wouldn’t be visible, like sprains, in order to get a bandage and attention and any minor graze or bruise needed a plaster. I did this all the time. This led to a bad case of “the boy who cried wolf” when I fell whilst outside on my rollerskates and I did actually break my wrist but my mum, who was so used to me limping home and complaining of this injury and that injury, just said “there there” and chalked it up to me crying wolf again. It wasn’t until the next day that they realised I was actually really in pain and I was taken to A&E. This obviously led to me having a cast put on and of course I loved it as it meant 6 weeks of attention! This was all pre-Ritalin.

Melissa – Did you ever talk about self-harming so you couldn’t go to school/or do something? Does talking about it tend to lead to doing it?

This kind of follows on from Sue’s question above. I didn’t use self-harming, or the threat of, as a way to get out of school/avoid doing something but I did use injuries and illness in that way. I always had a tummy ache, headache, sore throat or an ear ache. Anything I could use to avoid, but that wasn’t visible, was used often. The self-harming didn’t start until I was about 11 and it wasn’t something that I threatened to do beforehand. I would simply go into my room or the bathroom and quietly cut myself with a razor blade. I often hid my cuts from others, only showing them when the pressure of hiding them became too much. I was cutting myself for months before anyone knew. For me cutting myself had nothing to do with attention or avoiding demands – it was simply a way to make myself feel better. Self-harming is certainly something I would never advocate but I won’t lie – it helped me to let go of some of the negative feelings about myself that I was harbouring. It was such an emotional release if that makes sense?

Simon – How can I encourage my 11 year old son to think about how his PDA is helping or hindering him in life? He is always saying I will never get rid of my PDA or PDA wins etc.

This a difficult one Simon. I think a good place to start is to talk to him about others with PDA. Let him see that there is hope for his future. At the moment he, like all of us at his age, can’t imagine being 12 let alone being an adult and it will be hard for him to ever imagine himself any different from how he is now. Remember this is all he knows and all he has to compare things to. It’s still important to let him know that he’s not alone though, even if it appears to fall on deaf ears. Have you considered getting a copy of Ruth Fidler’s new book Can I Tell You About PDA? for him to read in his own time. I wouldn’t push it with him as that will more than likely just cause avoidance but let him know the book is there if and when he wants to read. I would also recommend that any siblings read it too. As he matures he’ll naturally gain a much better understanding of himself in relation to his PDA. Love, time and support are most important and he needs to feel that you understand him (even if you don’t).

Alison – At what age were you able to start to manage the anxiety and recognise that actually you were being controlled by it?

Hmm….where to begin with this one! Even at the ripe old age of 32 I still don’t think I have that good a control of the anxiety. There are some days that it’s so bad that I literally can’t do anything. As long as I’m in complete control of everything then the anxiety is low but this of course is hard to achieve in real life, even as an adult. Life has a habit of throwing curve balls and then there’s the unforeseen things that can’t be predicted let alone controlled. All I can do is try to manage and juggle my anxiety and things that I need to do. On good days I do more and on bad days I do less. Sometimes this can change from minute to minute so it’s just a case of keeping an eye on things and then adjusting accordingly. It can be exhausting some days but it’s vital if I’m to continue enjoying my life. I’m not stupid – I’m well aware that anxiety, at times, controls me but I’ve accepted that there’s very little I can do about that. I just to try and keep the balance right and take the rough with the smooth. It’s not easy but then anything that’s worthwhile never is! I wouldn’t not have PDA – it’s what makes me me. 😊

Kay – Can I ask you about friendships? Have you had any problems making/keeping/sustaining them? The reason I’m asking is that my daughter is so sociable and makes friends very easily, but within a blink of an eye it’s over, usually with tears and tantrums. Obviously she doesn’t learn from past experiences and I fear she’ll end up lonely. Can you relate to this in your teenage years and how does it feel to live in such social turmoil?

I can really relate to your daughter on this one. I’ve always had a problem with friendships and I still do now to some extent. As a youngster I would become too attached too quickly and I was too controlling. As you can imagine other children didn’t appreciate this and they soon had had enough and the friendship was over. It was very difficult for me to understand at the time – you see I wasn’t meaning to be so clingy, aggressive or controlling, I was just simply being me. I do have one or two friends that have remained from childhood but they are special. They had a level of understanding and compassion that I would say wasn’t the norm for children, or even most adults! I hurt them but they understood and forgave, even though they, like me, had no actual understanding of PDA. It was upsetting, especially as a teenager, because I longed to be “normal” and having normal friendships was part of that dream. I felt like a failure. As an adult I’m still a terrible judge of character and I often make bad choices. I invest in friendships that most would walk away from – I just can’t see it until it’s too late. I’ve always afforded people trust right from the start when perhaps I shouldn’t. I realise that trust is earnt and not just given but I just can’t help it. As a child this “given trust” would often lead to other children taking advantage of me, and to some extent this continues into my adult life too. I just can’t see it happening at the time. I think my problems with friendships now arise from a mixture of me being awful at picking “the right people” as friends, my longing for acceptance and my desire to be valued. Despite all of these problems I’m far from lonely – I’m in a loving relationship with my soulmate, I have a great network of real life and Facebook friends and I have a very supportive family. My life has naturally evolved in such a way that I’m almost entirely surrounded by friends who understand PDA, on whatever level. I think this is key to maintaining healthy long term friendships. Try not to worry – we are some of the most loyal and funny people on the planet, your daughter won’t be lonely. 💜

Nicola – My son suffers from an “injustice trigger”, ie if there is an injustice, however minor, he cannot let it go and it builds and builds to a meltdown. If you are similar, are there any strategies you use to help you move on or let it go?

As a child I was the queen of holding a grudge! (And I still am to a certain extent!) If anyone wronged me, deliberately or accidentally, then I would make sure they paid and I would stew and stew, becoming angrier and more resentful, and yes this did often lead to meltdowns, either at the person in question or at someone innocent. As an adult this “injustice trigger” is much more focused. I can’t bear it if I see someone being bullied, I’m a great believer in freedom of speech and I won’t take any crap from authorities! When friendships go wrong now it does trigger my anxieties and I have to try at look at things objectively, which isn’t easy to do, but it’s necessary if I’m to move on. More often than not friendships fail because of a lack of communication – either they have an issue with me but don’t feel they can talk to me about it because I have PDA or I’ve misunderstood something they’ve said or done. Either way this always leaves me with an overwhelming feeling of injustice. From my point of view: it pisses me off that people think that because I have PDA that it renders me incapable of having a rational conversation or being able to see their point of view – that simply isn’t the case, in fact the complete opposite could be said. I’ve learnt to deal with these feeling of injustice by removing myself from the situation and looking at things objectively. I’m then able to see what happened and who was to blame. This process then makes letting it go and moving on much easier. I still hold grudges but I don’t necessarily act on them, I just deal with them. I’m very stubborn but I can say sorry and admit when I’m wrong. This is only something that I’ve mastered over time.

Thank you all for reading once again. Please don’t forget to like and share this post. 💜

Follow the link to read parts 1, 2, 3 and 4 of YOUR PDA QUESTIONS ANSWERED

Well technically this blog had its one year anniversary on 1st February but due to a mixture of a bad case of “I can’t face that right now” and life getting in the way I’ve had to delay this post. 😕 I can’t believe that it’s been a just over a year since I wrote my first post! It really doesn’t seem possible. I’m so pleased at just how well received this blog has been and that it continues to go from strength to strength. It’s a pleasure to be able to help so many people and long may it continue. 😊 I’ve been reading a few of my first posts and it’s interesting to see just how far I’ve come. I’m a lot more “aware” than I was then and also I’m no longer embarrassed at all by who I am.

If this year goes to plan then PDA awareness will well and truly be placed on the ASD map where it belongs. 💜 I have a lot of exciting things planned for this year including giving many more presentations to both parents and professionals across the country and I’m also delighted to announce that I’ve had my book proposal accepted by Jessica Kingsley Publishers! I will be working with/co writing it with Ruth Fidler and Phil Christie has agreed to write the foreword! I can’t wait to really get stuck into it! I’ve already written a few rough chapters but they really are “rough” and need a lot of work but thankfully Ruth is onboard now to help figure out my ramblings! Lol. Ruth and I have already met up once to discuss chapter ideas etc and we have another meet-up planned in a few months. If the PDA Gods don’t conspire against us the book should be out in the spring of 2017. I know that seems a long way off but it really isn’t when you think about it. Also the wristbands continue to sell well – thank you to everyone who has bought one. If you haven’t managed to get yours yet you can do so HERE

In other news Paul and I have just joined our local Slimming World group. It’s really time that I got myself healthy and in better shape. 😊 We’ve only been going for a week so it’s still early days but I’ve already lost 1.5lb so I’m headed in the right direction at least. 😊

I want to end by saying a big big thank you to each and every one of you who follow this blog and leave comments – without you none of this would be worth doing. Heres to another great year of PDA awareness! 💜

I was pleasantly surprised at just how much I enjoyed this book. This book written by Ruth Fidler and Phil Christie is a great addition to the PDA library. It’s aimed at children aged 7+ and is written from the perspective of Issy, who is 11 years old and has PDA. Not only could I relate to just about everything that the character of Issy talked about but I also found it much more user-friendly than other “medical” books on ASDs. I have an appalling concentration span but I had no problem with this book. It was nice to not only read a book that was factually correct but also portrayed PDA in such a positive light. The more of us there are out there spreading the word the better! 😊

Like I’ve already said, most of the book “rang true” with me but I do want to focus on a few bits that I think are important to share with you all. I shall do it in page order so I can keep track (the notes I’ve made whilst reading are a bit messy!)

On page 25 Issy talks about some of the excuses that she uses when trying to avoid doing things. They all rang true with me but the ones that stood out for me were the ones that I still use now! (or variations of). Namely, “the cat doesn’t like it when I tidy my bedroom” and “I have just painted my nails and I don’t want to chip them” 😜 These are things I say quite often. Lol. I often just say them to myself. I won’t vacuum if the cats are asleep so I don’t wake them and newly painted nails is my excuse for a lot of things! Lol. Another that stood out for me was, “I read that if you don’t wash my hair for long enough, it will clean itself” – as a teen I once went 6 weeks without washing it because I’d heard the same thing. Sadly it didn’t work! Also on page 25 Issy talks about how when she is asked to do something she “…gets totally focused on not doing that thing”. For me it’s exactly the same. Some days when the demand on me is too great I quite literally can’t get past that and the avoidance takes over the whole day.

On page 30 Issy writes, “…I don’t like routines to get boring but I do like to know what to expect. I like it when my day is explained so I’m prepared for any changes or choices in that day”. This I can completely relate to. Routines bore the hell out of me and do in fact hinder rather than help me. I find that something too structured actually increases my anxiety and becomes too much of a demand. Nothing in my routine is ever set in stone. Flexibility is definitely the keyword here.

On page 32 Issy talks about how she manages her schoolwork and the fact that she has an “on pause” folder for work that she is unable to complete at that moment in time. Boy oh boy! My whole life is an “on pause’ folder! Lol. It would be quicker and easier for me to list what I haven’t started yet than it would for me to list the currently underway stuff! 😜 Like Issy I too find it easier to be able to dip in and out of projects etc rather than feeling forced to do it all in one go. I often write a bit of blog, reply to emails, carry out my admin duties, do some knitting and then repeat. It helps keep the pressure off a bit but things still get done…….eventually in some cases! Lol. I’m not one for sustained spells of concentration either so it’s a win-win situation for me.

On page 34/35 Issy talks about how important it is to her to “…be around people who make me feel safe and understand me. I call these people my shields.” This really rings true for me. I’ve referred in the past to Paul being like my “portable bubble/safety blanket.” It seems that similar can be said for Issy. For me situations that I would normally find overwhelming or impossible are more manageable with Paul by my side. I’m also not as scared to try new things when he’s with me. He really has helped me to open up my world just a little bit more and “live a little”. It’s not just Paul that facilitates this for me but a multitude of different people, just like it is for Issy. I’ve also, with age and a lot of practice, learn to do this for myself if needs be.

I know I’ve touched upon this subject in other posts but I felt it was too important not to mention again. On page 36/37 Issy explains how praise makes her very uncomfortable. This seems to be very common amongst us folk with PDA. For me it’s not only a self-esteem issue but it’s also the implied demand to be able to do the same thing, just as well, every time which for me, and others with PDA, is, at times, unachievable.

On pages 38/39 Izzy describes her sensory issues and I want to share with you all one thing I’ve found extremely helpful when I’m in a smelly place, such as a hospital or airport, and that’s to carry with me a small scented candle that I don’t light but I do sniff it. It helps block out the nasty smells and helps to focus my thoughts a bit more so I’m able to stay in control. It’s not only useful for smelly situations but also for anywhere where my anxieties are up and I need to stay in control and be “normal”.

On page 42 Issy talks about how meltdowns make her feel but what stood out for me most all was “…sometimes my family or my teachers say they feel like I’ve over-reacted to them when I have a problem doing what they ask me. They find it hard to accept that there some days I just can’t. These are not good days and the more they ask me, the more I get stuck…” I can relate so much to this. So much so I shed a little tear whilst reading it. Sometimes it’s like that for me. For me though I think a lot of the pressure I feel is also self-imposed because I know that’s how they felt last time so I assume it’s the same the next, which of course isn’t necessarily the case. This can, and does, cause me a lot of problems.

From page 44 onwards are some extremely useful and insightful strategies for managing someone with PDA. Again, like Issy’s part, it’s clear and easy to read and in PDA/ADHD-friendly bitesized bits. 😊 It strange to read about strategies for basically managing myself but it’s also extremely interesting. It helps me to understand why I do what I do and why those, in the know, around me do certain things.

The authors, Ruth Fidler and Phil Christie, are both experts in their field as far as I’m concerned. I’ve had the pleasure of meeting and working with them. They have a wealth of experience and knowledge that we can all benefit from. All in all this little book was a delight to read. It’s both informative and simple. Its perfect for explaining PDA to your child with PDA and their siblings/friends but it’s also great for adults too.

You can order your copy HERE

Thanks for reading. 💜

Jane Sherwin’s account of life with Mollie, her daughter who has a diagnosis of PDA, is both extremely moving and informative.

Once I picked it up I was unable to put it down. As someone with PDA and with there currently being few books available about PDA, especially from the perspective of someone with the condition, it’s lovely to be able to relate and feel a sense of “fitting in.” Mollie’s journey continues to influence and inspire me. It really is a great addition to the ever-growing library of PDA books and resources. 😊

My hope is that this book will help to highlight just how difficult life with PDA is, both from our perspective but also for those around us, and open a few eyes to this very real condition. Life with PDA is no picnic but with greater acceptance and understanding things can and will improve.
This book not only gives a very personal account of one family’s journey but also gives some useful strategies, tips and above all: hope.

My Daughter Is Not Naughty is beautifully written, witty and takes you on Mollie and her family’s journey through heartbreak, triumphs, struggles, diagnosis and misdiagnosis and the eventual progress that Mollie has made. It truly is a must-read.

Buy your copy HERE

Thanks for reading 💜

Well that’s another Christmas over and done with. I’m sad it’s over for another year but, if I’m honest, I’m also slightly glad too. It’s been a weird Christmas – not at all what I had planned or what I’m used to. I shall start at the beginning…..

I knew quite early on in December that this Christmas would be very different from what I’m used to. You see my stepdad remains unwell so I wanted to spend Christmas Day with him, just in case I guess, and Paul wanted to spend Christmas with his Grandpa, for similar reasons. As you can imagine this left us with no other choice than to spend Christmas apart. My thinking being that I have years to make memories with Paul but perhaps the same can’t be said for my stepdad and Grandpa. I know nothing’s guaranteed but it’s a safe bet.

So before Christmas we decided to throw a little party – just a few close friends and lots of laughs – as Paul wouldn’t be here for Christmas itself. We had a lovely time. For me, that’s what Christmas is really about. Friends and family. 💜 Sadly this year Jodie wasn’t able to come down due to study commitments but we are hoping that she’ll be down soon. 😊

The nibble table

Christmas Day was so hard for me. My stepdad was allowed home for the day which should have been lovely and was the reason I stayed at home but it was a nightmare. His behaviour and mood are so erratic at the moment. With hindsight, he really wasn’t well enough to come home, but we (me and mum) tried to make the best of it. I’m not sure he even enjoyed the day. He was so angry for most of it and was falling asleep by 4pm. I really did try to give him a good Christmas and stay positive. I cooked a light roast as he said he was having problems eating at the moment. Everything was tailored to him but it felt like it wasn’t enough. I was quite upset when he announced that the only reason he’d asked to come home was so that he could check his emails. I let it slide at first, thinking perhaps he’d said it wrong or something but he continued to say it throughout the day. By the end of the day, well 4pm when we took him back, I was knackered and my anxieties were through the roof. He was so ungrateful and apart from thanking me for my presents and commenting on how nice the roast parsnips were (Aunt Bessie’s) he didn’t once thank me or even wish me a merry Christmas. 😞 Looking back now I really don’t see why I gave up a Christmas with Paul and his family now – I mean what was the point of it all? I’m trying not to judge my stepdad too harshly but it’s not easy. He can’t help the way he is and I do understand that but it doesn’t mean that what he says and does isn’t hurtful or upsetting. I just need to find a way of dealing with it I guess. It’s just so sad to see him like this. 😞

So that was my Christmas Day. Not typical at all and certainly not what I wanted. Paul came home on Boxing Day which is, as far as I’m concerned, when Christmas actually began. We opened all the presents and we cooked a blow-out dinner on 27th – including homemade cranberry sauce. 😋 We had a lovely day, albeit a few days later than everyone else. I think my favourite presents were theatre tickets from Paul’s mum and a Womble/Orinoco hot water bottle from Paul! 😝 We also had some lovely cards and presents from some very special people – you know who you are and thank you. 💜

One of the Christmas cakes I made

All the hoo-ha of Christmas Day really took it out of me. I can’t express just how difficult it was to keep my anxieties buried whilst making sure my stepdad’s needs were met. I must admit I shed a few tears in private. I missed Paul, my anxieties were up and I felt like I’d been used to a certain extent by my stepdad. I don’t cope well without Paul around. Christmas was very hard for me and also quite lonely at times. 😞

As for New Years we actually went out! 😳 A dear friend had invited me and Paul over to hers for drinks and nibbles. We had a lovely time – chatting, putting the world to rights, playing a silly board game and watching the fireworks on the telly – all whilst Paul was being hounded by her dog! Lol. It was lovely just to have a laugh and not have to think about just how much my stepdad has gone downhill over the last few weeks and months.

So that was, in brief, my Christmas and New Year. Not traditional by any stretch of the imagination and not what I had planned but I survived it and, at times, I had a lovely time. I am incredibly grateful for all that I have. I’m surrounded by beautiful people who bring out the best in me. My New Years resolution is to: try harder.

Let’s end on a positive – here’s a photo of our tree!

Happy New Year everyone and thank you for reading! 🍷 💜

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 9,600 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

With a little over a week to go before the PDA conference I’ve reached a sort of plateau as far as my anxiety goes……but for how long? How much higher can it go? It’s very high already but I’m managing…..just. Anxiety is a funny thing, of course I don’t mean funny as in haha, but it is interesting how it affects the body as well as the mind. Even my cats are picking up on my extra anxiety. 😳

What is anxiety? Well in the dictionary it states:

anxiety

aŋˈzʌɪəti/Submit

noun

1.
a feeling of worry, nervousness, or unease about something with an uncertain outcome.
“he felt a surge of anxiety”

synonyms: worry, concern, apprehension, apprehensiveness, consternation, uneasiness, unease, fearfulness, fear, disquiet, disquietude, perturbation, fretfulness, agitation, angst, nervousness, nerves, edginess, tension, tenseness, stress, misgiving, trepidation, foreboding, suspense; informalbutterflies (in one’s stomach), the willies, the heebie-jeebies, the jitters, the shakes, the jumps, the yips, collywobbles, jitteriness, jim-jams, twitchiness; informalthe (screaming) abdabs; rhyming slangJoe Blakes; archaicworriment

antonyms: calmness, serenity

PSYCHIATRY
a nervous disorder marked by excessive uneasiness and apprehension, typically with compulsive behaviour or panic attacks.
“she suffered from anxiety attacks”

2.
strong desire or concern to do something or for something to happen.
“the housekeeper’s eager anxiety to please”
synonyms: eagerness, keenness, desire, impatience, longing, yearning
“her anxiety to please”

Well all that goes some way to explaining what anxiety is but that still doesn’t tell you just what that means to me or how it makes me feel. Some of the words used to describe anxiety also explain perfectly just how I’m feeling right now. Words like: apprehension, fear, disquiet, agitation, nerves, edginess and suspense stand out for me the most at the moment but I would say that all apply. The strange thing is that I feel like this a lot of the time anyway but at the moment it’s definitely heightened. Also these stronger than normal ‘anxieties’ are nearly non-stop whereas normally they ebb and flow throughout the day. I might have a few hours when I’m not anxious about anything but it soon returns. Physically it’s affecting me too, all this extra anxiety. My heart rate is up – I know because I’ve checked – and at times I can feel my heart pounding away. My sleep pattern has gone AWOL. I’m now up half the night and back to having afternoon naps. I’m also having more psychotic episodes and I’ve had tummy ache for nearly a week. I can’t relax my mind or body no matter what I try. I can’t focus my mind. Even just thinking about my anxieties and writing this is causing my heart to race and my breathing to quicken. So writing about anxieties raises my anxieties. Interesting…… 😳

I’ve had to cut back on many things to make room for all this extra anxiety and, hopefully, avoid full blown meltdown. I’m doing nothing every day apart from watching box sets, playing games on my iPad, listening to music, smoking lots and sleeping. It’s about all I can manage at the moment. Minimal Facebook, no socialising, no cooking or housework and no hobbies. These are the steps necessary for me to remain in control of myself. I would say that I’ve been anxious about the conference for a good few weeks already, if not longer but it’s only been in the past week that I’ve had to reduce demands right down. Basically I’m just counting down the days – marking time as it were. I’m having a hair cut on Tuesday and a beauty pamper session on Thursday in the hopes that it’ll relax me a little or at the very least give me something mundane to focus my mind on. (No offence) We are also going to a family party on Friday and I’m going to a craft workshop on Sunday. I’m very aware that this extra anxiety is also making me snappy with Paul. I don’t mean to be and I am trying to keep a tight rein on that and so far I’m doing okay. My already short fuse is definitely much shorter than normal! Things that don’t normally bother me are winding me right up and pissing me off.

When I think about sitting in front of all those eyes I can feel those feelings come racing back up to high. I’m not worried that I’ll mess it up or wimp out or anything like that so that’s not an issue. I’m just scared of the unknown and this is one of the biggest things/demands that I’ve faced in my whole life. I’ve never done anything like this before, ever. I have no experience. I’m not a professional with years of study behind me and letters after my name – I’m just me. Just Julia. I left school at 16 with no GCSEs. I’ve never worked or studied. All I have is my story. Is that enough? Will I make a fool of myself? Am I punching above my weight? Do people really want to hear me waffle on? Can they really learn from me? I hope so because me is all I have to give.
This will be the first time that I’ve spoken in public to so many people but it will also be the first time that I’ve shared all my skeletons as it were. Come Tuesday 4th November 2014 a few hundred faces will know everything. Things I’ve kept hidden for years. Things that even my own family didn’t know until very recently. These secrets, if you will, will soon be out there in the public domain. That thought scares the hell out of me but it also excites me because I hope that this will be the final step of closure for some of my demons. So come the 4th I will bare my soul and hope that I’m not rejected or judged…….. 😁 I just have to remember to breathe. Lol. 😳 Despite all of this I’m still happy, still smiling and looking forward to it. 💜

Invisible disabilities week 19-25th October 2014

Posted by juliadaunt on October 19, 2014

Posted in: REBLOGGED BY ME. Tagged: ADHD, Adult PDA, Anxiety, ASC, ASD, Awareness, Bi-Polar, Depression, Mental health, Obsessive Compulsive Disorder, OCD, Pathological Demand Avoidance, PDA, PDD, PDD-NOS, Psychosis, Questions, Self harm, Stress. Leave a comment

PDA is very much a hidden disability: Dinky’s mum tells you her side of the story in such a moving and inspiring way. Makes you stop and think……….

Dinky and Me

Sometimes it seems every week is another awareness week, or day.

The invisible disability is something I feel needs more understanding.
Whether that be PDA, ASD, ADHD, PTSD, Fibromyalgia, IBS… And countless more.

The way society views disability, actually disadvantages those with hidden disabilities, not only that, but also the negativity spouted about something people don’t understand is staggering.
People are more set to judge than wonder ‘what if?’

The hidden vs visible disability is something us parents of autistic children understand all too well. (And before the PC brigade come in… Yes my daughter is more than her autism as are the other wonderful people who just happen to have an autism diagnosis. But according to autistic people, they prefer to be called autistic people, it is as much a part of them as their other characteristics! So I shall listen to those whom I wrote about and address…

View original post 1,281 more words

I can’t believe how long it has been since I did an actual post about what’s been happening in my life so I thought I would cover my whole summer, month by month, so I don’t leave anything out.

MAY

Following my complaint to the RD&E Hospital about their poor treatment of me I received a written apology from the Chief Executive for the way in which the hospital handled my care! She promised that they would learn from this and that it would help to make sure that this didn’t happen again. It was also about this time that I went for the second attempt of the lumbar puncture there and wow!, what can I say, the treatment I received was first rate and much more ASD-friendly. 😊 I had a private room in Gynaecology – this was their idea because it’s quieter than the other wards, has private rooms and more natural light so I wouldn’t have so many sensory issues. The staff were very friendly and I felt okay with the whole thing. I laid still and happy whilst they tried for about an hour to withdraw some fluid but annoyingly they were unsuccessful, so I left with 12 needle marks in my back and no further forward. 😕 Frustrating yes but not traumatic this time because they treated me correctly. No one barked orders at me, the private room gave me privacy, we had the window open and the staff were much nicer. I hope that they have all leant from this and it wasn’t just a case of “let’s improve just for Julia”. They did tell me that they were making sure all staff understand ASD basics so let’s hope. 😊

We went to Bromley to celebrate Paul’s Grandpa’s 90th birthday and I made the cake (see photo below) I had quite a bit of online help from one of the PDA mums, who I won’t embarrass by naming, but I couldn’t have done it without her help. 😊 I won’t lie, the party itself was quite stressful from a sensory point of view – busy restaurant, loud music and lots of people talking and shouting – but I still had a good time and it was nice to have all of Paul’s family together in the one place – this normally only happens at Christmas so it was nice. 😊

Towards the end of May something awful happened – my step dad, Laurie, fell from our shed roof and severely injured his head. Thankfully I was around when he fell and remembered my basic first aid training from school. I spoke to him, kept him talking, kept him calm and still whilst we waited for the ambulance to arrive. It was horrific. Blood everywhere. Something that I never want to go through again. I think I was quite shocked after and you guessed it I went into a bit of shutdown after. 😕 I guess that’s not surprising really. Laurie spent 4 days in hospital. The only injury found was a broken collarbone. At the time we were all so relieved as of course it could have been much worse but more to follow on that in a bit. 😞

Grandpa’s birthday cake

JUNE

At the start of June Paul and I went to stay with Jane in Stoke-on-Trent for near enough a week. Jane, her hubby, myself and Paul all went to Cosford Airshow and had a proper grown-up day out. Don’t get me wrong I think Mollie is great but it was nice to see Jane and hubby relax and let their hair down. We also met up as usual with other members of the PDA army. We had a lovely time which is why this next bit is so painful – Jane and I are no longer friends (as of end of July) 😞 I don’t want to go into the ins and outs of what’s happened between us because it’s too painful but it’s safe to say that our friendship is over and this breaks my heart.

The 14th June was Paul’s birthday. 😊 I made him a cake (see below) and generally spoilt him rotten! 😃 I really do love him and everyday I am grateful for the gift that is him. 💜

My lovely Jodie came to stay for 3 weeks. It was lovely having her home and seeing how much she’s matured. She really is blossoming into a confident and independent women. I’m so proud of her and all that she’s achieved. 💜
Whilst Jodie was here I had the mammoth task of creating a slideshow presentation to show what I might discuss at the PDA Conference, if I were to take part. You see I had emailed and told them that speaking at conferences is something that I’m desperate to do so they asked if I could put together a slideshow. I had a lot of help from Jane and I couldn’t have done it without her. I worked on it solidly for 3 days! 😳 It is surprisingly difficult to squeeze 31 years into 57 bullet points/19 slides. 😳

I also set up a Go Fund Me account so that I can raise money to design and buy some PDA awareness wristbands. I reached my total within 40 minutes! 😀 So pleased. You can still donate via the above link. 😜

Laurie: is still in a lot of pain, unable to do much for himself and is getting more and more confused.

Paul’s birthday cake

Sometimes I just don’t know what to do for the best 😢

JULY

In July we celebrated our 10th anniversary! 😍 Sadly Paul had to work away for our actual anniversary, in fact he was away for most of the week too. I didn’t mind. I support him and his work 100%, even if that means that we spend anniversaries apart. I cannot believe that we have been together 10 years! It’s not been an easy journey at times but we have faced each problem and hurdle together and I don’t think that there is much that we cannot overcome together. Paul really is my rock and I love him to the moon and back. 💗

I finally got to see the GP of my choice after waiting over 6 weeks and I was told that I have polycystic ovaries. To be honest I wasn’t that surprised by this diagnosis. I also had an ultrasound. My periods have become so irregular that it’s not funny and the pain is so bad at times. Feels like I’m being punched hard from the inside out. GP told me I needed to lose weight. Yeah, state the bloody obvious mate! I would if I could but it’s so hard. The whole demand to be thin/demand-avoidance is a hurdle I struggle with.

July certainly was the month for airshows. Paul and I went to Yeovilton Air Day with our good friend. It was a great day. Fab weather, great company and amazing displays. What more could I ask for. Like I’ve already said he worked away too at airshows. Busy days. 😊

I became a Godmother to all 4 of my best friend’s children! 😊 I baked a cake for that too (see below) – I’ve been baking a lot of late and throughly enjoying it. 😊 That was a very proud moment in my life – watching her beautiful children being baptised. 😊

Laurie: is still very unwell. Doctors tell us it’s dementia. 😞

Paul and I went to a wedding in London on what felt like one of the hottest days of the year. Despite the heat it was wonderful. The bride looked stunning and everyone was so kind and welcoming. One day I hope that I’m the bride.

Towards the end of July there was a massive bust up in the PDA group, again I’m not going into the ins and outs of who started what but it was at this point that Jane stopped talking to me. To say that I’m upset and deeply hurt by this would be an understatement. I trusted her not to be like so many others. 😢

My Godchildren’s cake

Ever felt like this???

AUGUST

During August I was still dealing with the fall out from everything from the PDA group. A few extremely spiteful people were still sending me nasty PMs – these people, who I didn’t even know, weren’t even involved directly so I have no idea why they felt the need to involve themselves but there you go. I didn’t reply and just blocked them. I will say one positive thing though – I’ve been shown who my real friends are and I can honestly say I’m shocked at who is on that list – some I expected to be there but some I wouldn’t have thought of in a million years, all these lovely people have rallied round and supported me. Thank you. 💜

I made massive strides with the book. 😊

I also had yet another ultrasound – this time on my stomach, gall bladder, pancreas and liver. All normal apart from fatty deposits on my liver – GP told me not enough to worry about and that it’s normal for someone who is overweight.

My brother and his girlfriend came to stay for 5 days which was lovely. We hadn’t seen them for ages so it was nice just catching up.

On August bank holiday Paul and I took Corey and his mum Go-Karting. Well Paul and Corey did the karting and Lou and I watched! It was great to see Corey relax a bit and enjoy himself. He’s such a lonely soul. It breaks my heart that he’s just being continually failed by services that are meant to protect and help him. 😢

Paul and I went to Shoreham Airshow. ✈️

Laurie became increasingly unwell and following weeks and weeks of traipsing backwards and forwards to the GP and hospital it was discovered that he had in fact broken 4 ribs when he fell! To say that we were stunned that they didn’t pick this up when he was first seen back in May is an understatement! How much pain could he have been spared if he’d known? He was told that the pain in his chest was muscular and that he must keep moving, which he did, and of course that has now made matters worse. 😞 I’m also now using a stick to walk any distance as my balance has become much worse.

SEPTEMBER

I went to see my neurologist and if I’m honest I wonder why I bothered. He’s completely out of ideas and it was clear to me that he can’t help me. I’ve decided that I won’t get any answers. It’s been nearly a year now. A year of pain. A year of waking up and feeling like my brain is trying to force its way out of my ear. Enough is enough. Enough prodding and poking. Enough tests. I will just learn to manage, same as I always have. Whatever happens I won’t let this stop me. I will be okay. I will overcome this hurdle.

My poor stepdad took a turn for the worst and was taken to North Devon District Hospital, where they identified a bleed on his brain, and transferred him to Derriford Hospital in Plymouth. He underwent surgery and there were complications but he’s now making good, but slow, progress. Thankfully they’ve now transferred him to Bideford Cottage Hospital, about 20 minutes from us rather than the 2+ hours drive each way to Derriford, so we can see him more often. Thank you to everyone for their well-wishes. 💜

Paul and I attended a meeting to discuss my involvement at the forthcoming PDA conference in Cardiff and it’s happening! On 4th November I will be speaking about my experiences and hopefully helping others to better understand PDA. To book and for more information on the PDA conference click HERE
I won’t lie to you all I was extremely nervous before the meeting but I’m glad I pushed myself to go. Yes it raised my anxieties and yes I felt intimidated but look what I’ve achieved – more people will hear my story and more support can be given. 😊 I just need to get through the conference now…. 😊

Buy your PDA awareness wristband HERE and help us to raise the public profile of PDA, whilst raising money.

The carrot cake I made for the PDA conference meeting

Paul, sums up my summer 💜

So on reflection: yes I’ve been dealt some pretty shitty blows but I’m still standing and I’m still smiling. I’ve come to realise that some people will never be able to see past my PDA. To some I’m the scapegoat for their anger towards PDA. To some I am just ‘the adult with PDA’. I’ve realised that I need to be more careful of who I let in. I’m tired of being hurt by people who pretend to be my friend just so they can learn more about PDA, which there is no need for because I’m already an open book. If you want to know something then please just ask rather than bullshitting me and pretending you care. I’m tired of being used. It hurts. I’m done crying. You won’t win! Life will always throw curveballs but I won’t let it beat me. I have my family and friends so what more do I need. All in all I’ve had a pretty good summer – onwards and upwards, without negative and cruel bullies. Here’s to better health for Laurie, me and all my friends who are fighting their own battles. Here’s to the PDA army. 😜

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	Nick Cahill on PANDEMIC CHRISTMAS, PART …
	Lapellar on ISOLATION HEAVEN
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	juliadaunt on ISOLATION HEAVEN
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	juliadaunt on CRAP START TO 2020!

Me, Myself and PDA

YOUR PDA QUESTIONS ANSWERED (part 6)

YOUR PDA QUESTIONS ANSWERED (part 5)

HAPPY BLOG-VERSARY!

BOOK REVIEW: “CAN I TELL YOU ABOUT PATHOLOGICAL DEMAND AVOIDANCE”

BOOK REVIEW: “MY DAUGHTER IS NOT NAUGHTY”

OUR UNTRADITIONAL CHRISTMAS

2014 in review

WHAT ANXIETY MEANS TO ME

Invisible disabilities week 19-25th October 2014

MY SUMMER

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