When people change the social norms…

When people switch up the social norms of a situation it can be particularly difficult for me to understand and figure out why? What was wrong with how things were before? Why in heavens did it need to change? Let me give you some examples…

Since moving out we have been to Justin’s parents twice for dinner. Now before I used to go there every weekend, they would be welcoming saying hello and asking me how my week had been etc but then we just got on with the weekend, as if it was normal that I was there and accepted. Now when we go for dinner both his mum and dad will welcome me with a kiss on the cheek. I know I am now a ‘guest’ as Justin no longer lives there but I have been going round to theirs for two years and been given a everyday welcome why now am I being treated differently? I just do not understand it. Why the big change and make such a fuss when we come over now? Nothing has really changed, I only ever used to go on weekends before? It has really thrown me both times this has occurred now. I just expected things to continue to be the same with the way our relationship worked but apparently not. This is the same with dinner itself, we are ushered into the dinning room and dinner is given a lot of thought and effort and we have both times had something ‘special’ for pudding. I thought that dinner was fine before and that his mum was always welcoming with food and everything but this has been more. Like when her sisters and family come over.

My aunt has even had a touch of change when we have dinner there although no where near as dramatic. She still greets us the same and doesn’t have any different expectations in behaviour or anything whilst I am there. I don’t feel the need to ask to go to the bathroom at hers I still feel like it’s a safe place for me, but she has been giving lots of thought to dinner and buying us extra little treats. I guess this is because she is only seeing us once a week rather than every day now so I do understand to some degree. I just never expected or assumed that things would change. I just believed that things would be exactly as they were…just on a less occurring basis.

Why do things have to change like this? Why do I now only feel like a guest at Justin’s parents house? I feel like I do when I visit places I haven’t been much before. Don’t get me wrong at all they are still lovely and none of that has changed. The issue isn’t them it is how I now have to adapt. I think people just think this is easy to do. For me it really isn’t. I get used to how something is. How people are with me and when they then mix this up for any reason it really throws me out. Another example would be if someone whom is my friend randomly treated me really professionally in other circumstances or something. It is really hard to explain and I know that I am not getting my point across how I intend to which is really frustrating but I hope you understand at least the basis of what I am getting at. Why is it that society means we switch up the social norms in these ways? How can anyone who struggles socially, especially those on the spectrum be expected to keep up with these ever changing expectations? It is a challenge everyday to fit in and follow social norms (many of which already make hardly any sense!) without them being switched up on us.

This is something that is really perplexing to me! Not only that but I am also now expected to treat people differently when they come to my home? Why! My relationship with this person hasn’t changed so why do I now have to be over polite. Of course I would now be a host in the sense of offering them a drink and what not but I feel like the whole way I approach them is expected to change and I really cannot fathom why this is. They are still the same person I knew three weeks ago before I moved in. Why act differently with me? and expect the same of me? I am telling you it is absolutely mind blowing! Am I meant to be treating Justin any differently now that we live together because if so I am failing miserably!

If anyone wants to explain this to me or give me any pointers or ideas on how or why or what I should be doing socially now please do! I am just expected to know the difference and the change and I honestly haven’t got a clue!

An extra little moment…

So recently I have been questioning myself and my career. I love what I do more than anything but more and more recently I have felt inadequate, not good enough.

All my life I have struggled to be like everyone else, to see the world as they see it. Every day is a constant battle to understand and decipher social situations, not feel like an outsider. Working with children has always been the one thing I believed I was good at. Something that came more naturally to me, understanding children is for some reason 100 times easier than adults and I truly believed I was good at it. But now I am questioning everything. Due to circumstances which I cannot discuss too much Ive been made to feel like I’m good enough to be this person anymore. My aim has always been to be the very best for the children, they deserve that! What I do as a practitioner is essential. I’ve always prided myself on my ability to meet their needs. And technically I know that no one is saying I’ve lost this ability, just that I’m not ready for the progression but now I can’t help but not feel good enough at any of it. I feel like such a failure. Striving and feeling good about one thing I genuinely believed was a talent. I’ve never before questioned my career choice but now I’m wondering whether working with children is even what’s right.

Something else that has been on my mind today is that I hate how people sometimes think I’m being overly dramatic or over analysing a situation. I cannot help this. You can tell me to your blue in the face to just get over something but how can I possibly just ignore the myriad of emotions and sensory overload that is stabbing away inside me? I cannot change the fact that my brain processes things differently, I cannot change that some things effect me more than what you think they should. I am just a person trying to be a square peg in a round world. I am doing my very best. Sometimes the feelings inside are so difficult that really all I want and need is to curl up under blankets, take away the sensory overload and be for a while but I can’t do this as often as I require because I am trying so hard to fit into the world which I find myself. Sometimes I am lost and I don’t even know how to begin to be found because no one understands what I’m feeling.

What’s occurring in this life of mine…

Firstly, I need to apologise for the small break there has been in updates! This has not been intentional and I will still endeavour to write as often as I can moving forward but there was been some very good reasons as to why I have not updated… the most important being that I have finally moved into my own home!! My very own home. This has of course been a very interesting time for me and one I will go into deeper in a moment. There have been other things going on recently within my life too, some which I cannot touch on yet due to the nature of them and the circumstances surrounding them but I will at a later date.

So let’s go back to the most exciting, life changing and scary thing… moving into my first real home! This has been something I never believed I would achieve due to factors surrounding both my autism and my past much of which I have discussed in previous posts.

The actual process of moving in was probably the most traumatic part of the whole experience to be fair as this was the most hussle and bussle. The day we got the keys we came over and started decorating the living room, painting it a lighter cream colour. This didn’t seem to take so long and everything was falling into place nicely. On the Saturday was the main bulk of the decorating, and I bought over a load of boxes in my car this also seemed to go very well, no real issues throughout the day and I was feeling calmer than I thought I would be about everything. This may have been due to the excitement of having a place where I could settle.

I think this is why it has been such an easy adjustment and not something that has triggered any meltdowns or feelings of anxiety. For me this was the least unsettling. I have lived since about the age of 16 between places, never being fully registered within a place so therefore unable to do something as simple as having my post sent to one place. Always living in fear that I would have to leave and move on for whatever reason, either the person getting fed up with me, it effecting their income or life too much, something happening to that person and therefore in effect making me homeless too. Although I will always be forever grateful for everyone that has had me stay with them over the years, especially my auntie who has been like a mother to me and gave me the closest thing to a home she could given her circumstances. Owning the flat takes away so much of the anxiety that I have had over how and where I live. If anything it has calmed my feelings, allowed me to sleep better, settle better, feel at ease.

Anyways, following the decorating it was time to move everything in on the Sunday. This meant people everywhere, lots going on, everyone trying to work out the best way to do something or to organise trips etc and honestly I just wanted to sit in my flat and bask in the fact that it was actually mine. The first things I needed to sort and unpack were my obsession collectables, dvd’s and books. I know to many people, especially Justin’s parents for example, this seemed strange and almost selfish because it was only my things but I need them. I needed to put up all of my Iron Man things. It made me feel happy, took away the overwhelmingness of everyone being there, everyone trying to do so much at once. It may not have been the most essential thing for actual living, to needing to get by each day but to me it was just as important if not more so as having some food in the cupboard, or the bed put up.

Buying and sorting all the things in the flat has been amazing, making it a home for both of us and sorting it to how we want it. The only aspect here is that I am very impatient when it comes to matters like these. When I know how I want something to look or what things I want to buy then I want it right now. I  am not good at being patient and getting things over time, I want things to look how I envision them right away. I have had to really work on this and curb the urge where possible. Allowing my partner to make decisions about our home too and come to compromises where needed. I suppose this is probably similar to many people when they first move in however I struggle more than others to stop myself and hold back.

So we are now two weeks into living here and everything is running pretty smoothly. Our first supermarket trip was thankfully hassle free, and not as busy or traumatic as I first envisioned it to be. We agreed on what we needed to buy so I am guessing that helped matters! The only thing we have had an issue with food/drink wise has been the milk… Now to me it says on the carton that once opened it has to be consumed within three days, also at work this is something we have to follow, therefore once three days were over I poured the rest down the sink. Now when Justin came home he asked where the rest of the milk had gone, and said that to him this is just an advisory and he goes by the date on the bottle. I burst into tears. I felt like such a failure and yet I knew I wasn’t going to be able to change my thinking. I knew I wouldn’t be able to use or keep the milk after three days because its not what it says to do. It really wasn’t a problem, the easy and quick solution is that we will buy two smaller bottles of milk rather than one large! This way it will keep both of us happy.

I have loved having people come round and see the home that we are creating, showing them what we have achieved. I have never felt prouder than what I do of our little home and how it is coming together. I am sure over the coming months there will be more posts related to how home life is going and the changes and adaptions I have to go through, but for now I am going to finish up, relax in my arm chair and enjoy the feeling of being at HOME.

Meltdowns and how traumatic they are…

Unfortunately like most people on the spectrum meltdowns are a natural part of my disorder. Most of the time they are quite mild and I can pull myself out of them by engaging in wearing my ear defenders or biting myself. Occasionally something triggers me and my meltdowns are a lot more intense.

When this happens I know I’m not going to be able to prevent it. I can hold it off, keep the buzzing and emotions on the inside for a while but eventually I need to let it out, take myself away and just let the meltdown happen or risk it being even worse. When I feel like this I need to put myself into as confined space as possible, pushed into a corner, squeezed between two pieces of furniture. Covering my ears helps but it doesn’t take away the sensations. It’s when it gets like this that it is most embarrassing, biting doesn’t even make enough of a difference, doesn’t ease the feeling of meltdown like it normally does. I hit my head. Either against a wall or something close by and if I can’t do this or it isn’t enough then I will pummel the heels of my hands against my forehead and temples, faster and faster until I cannot take anymore. I cry and cannot stop myself, become in capable of speech. It is a horrible experience. I hate the idea of anyone seeing them. Not because i am ashamed of having meltdowns, I know they cannot be helped but because people don’t understand them. Have terrible perceptions related to them. People think I can not cope or that I am a freak, that these are weird, that it makes me weak.

Once a meltdown is finally over I am physically, emotionally and mentally drained. Even more so when they are as strong as these ones. I can if I need to go right back to whatever I was doing as if nothing happened, if that is what is required of me but once I’m home I will often have another meltdown to compensate for the role i have had to put on and the mask I have had to work so hard to wear.

After I am heartbroken about the fact that my autism has let this happen all I can think about is what the people who know or saw my meltdown think. What are their perceptions of me now? This feels worse when it is around things such as work (very rare) or my fiancé’s parents etc. I spend my life trying to show people how capable I am just for it all to come crashing down around me when a meltdown hits.

Not only is the actual meltdown itself traumatic but the after effects are if anything even more so. The loss of respect, understanding and the way people then see me breaks me inside. I wish the understanding that meltdowns weren’t a character flaw, do not make you a weak person or change the good things about you were better understood. That it didn’t change how everyone around me looked at me.

I really wish I could take back the large meltdowns. Not have the lasting effects that come from them such as the inability to sleep because of processing and worrying, the bruises from where I have bitten myself or banged my head. They lead to a lot of questions, I’m not ashamed because I know why they are there but again I know people see it as self harming when that isn’t strictly the case (yes I have harmed myself but it’s not for the same reasons as self harm)

I just want everyone to know who reads this that I am sorry. Please don’t think any differently of me. I am still a capable and strong person. I am still me. Don’t focus on this one moment. Remember all the times I haven’t had a meltdown, and that autism is something I have to live with everyday. I battle these feelings all the time.

Struggles with conversations and thinking about my wedding…

The biggest sensory issue for me probably relates to auditory senses. I wouldn’t say I ever even realised it to begin with, its only been as I assess myself that I really see it. Lots of people talking is the worst for me and I hate it. It means I struggle when people are all talking at once, or when voices begin to raise or even when there are just a small group of people all involved in a conversation. The voices constantly changing grates on me, makes me want to cover my ears, tense up and just shut myself away. I hate this because it comes across as I am being rude as I shut myself down. I find myself unable to join in with the conversation and needing to immerse myself in my own things, normally I will start reading or something on my phone in order to help stem the feelings creeping up on me. I hate this! How can I expect people to understand that I am being quitter than normal, or ‘playing’ on my phone because everything inside me feels like pins pricking at me, and the more the conversation goes on the worst the feeling gets until I want to cry, hide away, I get a physical headache from it all and want to stim in order to prevent the meltdown feeling.

What makes this even harder is that I don’t understand why this doesn’t affect me within my job. Children are by far the nosiest creatures going, crying at the same time, just making loads of noise within their play, all over the top of each other and yet this doesn’t phase me at all. This just makes it look like I am making up or exaggerating how I am feeling when I try and describe how noisy adult conversations make me feel. I can’t even say it is something that I understand so how can I expect others too? Maybe its because when I am in work mode it’s a role and a lot of my symptoms drop out and I can deal with situations that in similar circumstances I would struggle immensely with.

Maybe it is the tone or pitch of the noise? Children although higher pitched are somehow easier sounds for me to process than the throb of conversation around me?

During these moments are the times when I really want to wear my ear defenders. For some reason I do my best to battle through and not give in and put them on. Not because I am ashamed of the fact that I need them or anything but because this just adds to how anti social I look and the rudeness that I feel. I don’t want people to think I do not care, or am not interested or engaged in things they talk about, it isn’t about that at all. It just physically hurts. I apologise to anyone that thinks or whom has ever thought that I do not care or am being rude at social events. I would love to not suffer in order to make things look better, to not be an embarrassment or someone that people have to ‘apologise’ or ‘explain’ so that people do not get the wrong idea about me but I appreciate when people do understand after being explained to, not that it takes away my feelings of failing.

All the talking about sensory processing and noise level of conversation has got me thinking about planning my wedding. I had already decided I only want a small wedding, but all of this has cemented it for me, especially for the main ceremony. I don’t mind so much for the evening, its easier in a part mode (which is strange seeing as there are more noises to process…) but the whole attention wont be purely on me and I can immerse myself at that point in the dancing and having fun side of things. I have also realised how hard it is to find a venue that is going to be nice enough, small enough, cost effective enough and mean that I don’t have the hassle of going to different events throughout the day! It’s a good job we aren’t rushing to get married, partly for this reason. To give us time to prepare and find what is right. Then I start thinking on the other wedding issues, such as food. I can be quite fussy with the type of food that I like and am generally quite a plain and simple person when it comes to food but I know wedding food is often on the fancier side and actually this is what people expect…to be fair its not like I am a very hungry person so as long as my partner likes the food then it doesn’t really matter. It’s a lot to think about and take on board. This isn’t something im very good at. Anxiety of actually looking into things and having to go places and deal with all the logistics is difficult for me. I would be fine if I was supporting someone else, or doing it in a work capacity because it’s a role and I can take that on, unfortunately doesn’t meet the same criteria in my brain when it is for myself and I am left battling the over excited part of my brain that wants to sort it and plan it all and the other aspect that shy’s away from all of this and wants to be able to sort it all online with a few clicks. I wish it was that simple!

A few random thoughts of the week…

This week I have struggled to find something to write about. There has been a lot going on in my life recently and I think rather than focusing on one specific  area of my autism I will share a range of the things I have been feeling and thinking about this week.

This week I have decided to share on of the things that I use to help support and focus myself. Writing has always been a tool of mine that I have used to help express myself. The written word is much easier for me than spoken at times, especially during difficult and tricky situations relating to my autism. From an early age I have used this love of writing to create stories, these often draw on areas of my own life and things I have struggled with.

I enjoy the process of writing, it helps me to process everything and begin to understand myself. Writing my blog has defiantly supported me in understanding myself and share my experiences and thoughts.

I am not saying I am by any means a great writer or anything of the sort but I know that I can put a story together. English was always my strong point at school and I enjoyed immersing myself into my own little worlds, this is something that has stuck and adapted to include others worlds, such as movie characters and television characters.

I have created a story which if people who know me look closely enough does incorporate much of my own life into, putting this into a character helps me to show the world through my eyes. Although the character I have written isn’t autistic and has very different life to me it is the subtle aspects which draw on myself, how the character is written and the inner thoughts.

I believe that learning these talents and sharing these is an important aspect of autism. I know this isn’t always an easy fete to see, and depending on where on the spectrum someone lays it isn’t always obvious. Use someone’s interest and focus just like you would do with anyone else. If an interest is in dinosaurs then use this to support and develop, make someone feel good about the fact that there is something they are good at and know inside out. Bring them positives.

Writing is the one thing I can use. My intense focus on Iron Man, the programme Castle etc are not really going to help me with anything in my future, other than to feel better and enjoy myself, but writing is a skill that I can try and use, try and make a difference with.

Secondly this week I have been assessing one of my greatest and worse aspects of my autism. Whatever I believe in is something which I will not let go off. This is great for aspects such as peer pressure as I like what I like whether it fits with the norms of the people around me or not. This was most prominent when I was younger and my interest and love was for the girl band Atomic Kitten. None of my friends were big fans of them or any of the people within my year at school, yet I was obsessed. I didn’t care that my friends preferred different music and change who I am to listen to it. This still rings true today, I like whatever music I like whether it fit with what is expected for my age group or with the people around me doesn’t mean anything to me.

This has meant I am less effected by things such as peer pressure and social norms, which means bullying me about these things has very little effect. I will not change who I am. As I have got older this has also helped with me having and sticking to my opinion and views on things. I don’t stand down on what I think is right. I will fight and fight for what I think, this is great as long as what I am thinking is on par with people around me and is actually the right thing. It can be really hard to change my way of thinking in order to see things from others points of view too though. Not that I won’t listen, I will always take in what everyone is saying but I need evidence or for what I think to be proved wrong in order to adapt. Ina  work sense this is great as I am able to follow rules, policies and procedures in an exact manner. This isn’t so good in my own personal life, for example the evidence suggested heavily to me that I was unable to find love. Mainly because I sucked at the physical aspect as I do not always like being touched and the evidence of my life suggested that no one would be able to put up with this. I am not very good at blind faith when it comes to myself and my life. It didn’t matter how often people would tell me things would get better I just couldn’t see it until it actually happened. Now, now I would advocate at how quick life can change around, how things can go from being at their absolute worse to the very best. I went from being suicidal and thinking I would never have the things I desired to finding the most amazing, understanding and loving man in the world and am now on the way to the future that I have always dreamed of. If someone had tried to tell me this a few years ago (in fact people did) I would have been absolutely adamant that this was not going to happen. I know having a conversation with me when I am being stubborn is very difficult and I would like to apologise for this but I know it won’t ever change. I am who I am in this sense. I will listen to your point of view, but I wont ever truly believe it without the evidence to back it up.

Another aspect that is currently on my mind is my return to majorettes. (baton twirling). This has been an aspect of my life since I was five, and something which I absolutely love and adore. I am not that good at it really, too clumsy and little sense of special awareness but I enjoy the challenge and the focus it gives my mind. I had some problems with being there and peoples understanding of my autism and how things effect me, I felt like I was being bullied etc. This is something that we have tried to develop and work on through a series of meetings, which although quite have the outcome or understanding come from that I wanted it was enough for me to begin thinking about returning and seeing how things go. This is where I am currently. I cannot get over the anxiety enough to go back. How will I know whether my troupe actually want me to come back or not? Are they just doing what they think is right because I am autistic and it would be discrimination to not? How will they treat me? I thought these people were my friends, will they still want to be? Will I be able to get over the anxiety enough to actually join in without my autism getting the best of me and me feeling the need to cover my ears or hide away and immerse? I want to go back, I really do miss it but I am too scared, especially right now with everything going on in my life and how this is all making me feel right now? Like I am already all over the place will returning help or make things worse? I don’t know how to make people understand or show them that I am still the person I was before. I hate feeling like this. Not knowing what to do for best.

Finally this week my difficulty in sleeping has really shone this week. I need things in my life to start settling down and I know that there is nothing that I can do to help with sleep until this happens. It is not a problem with falling asleep exactly, it more comes from staying asleep and stopping the intense dreams from preventing me from waking relaxed or rested. Luckily I am a person who can survive on little sleep without it having much effect on me overall. This doesn’t mean having a good nights sleep isn’t still beneficial for me but it doesn’t shut me down during the day. As long as I stay busy I don’t really think about the lack of sleep I have had until I slow down and stop again.

I have tried things such as sleeping tablets in the past but they do not really have much effect. As I said it is mainly the dreams that get me. They aren’t even necessarily about anything that is happening within my life but they are so intense and realistic, when I initially wake the dreams feel so real and I have to try and assess what is happening, even sometimes throughout the day parts of dreams rush back to me and I have to think about whether this really happened or not, almost like de ja vu.

What is most frustrating with the dreams is that when I first wake I can remember them all clearly and I try my best to hold onto them but of course they begin to fade. This wouldn’t be a problem but they sit just outside of my consciousness throughout the whole day, bleeding into my day with odd thoughts, nudging at my brain but never coming fully back to me. I hate this. I just want to remember them or totally forget about them. I cannot stop thinking about them and then part of my focus is always being pulled towards them, this can last for days if other dreams do not come and overtake. Yeah this isn’t anything major but just something that really bugs me.

My apologies for the randomness of todays blog. Hopefully when things settle I will able to be more cohesive in my posts again and get back to what I want this blog to be. Thank you to everyone who sticks with me and continues to read these, it truly means so much to me. It gives me the platform to be myself and know that I am not alone in the world, that people do care about how the world looks to me too.

Missing you…

The feeling of missing people is one feeling I particularly struggle with. I think that this comes down to how in some aspects, once I have moved on that’s it I’ve moved on. I do not know what to do with the feelings like this. I cannot put into words exactly how it feels and I do not know what to do to make things feel better. How can I take away the feelings I have when I am not in a position to see the person/people?

Right now, I miss my sisters. Until now I have done well with these feelings and not had them bother me too much. Obviously I have missed them and hate not seeing them all the time but I have coped with talking to them, messaging them and knowing that they are happy. This weekend I am feeling it. I think this has been enhanced by the feelings I had within last weeks blog with missing friends.

It has suddenly become real that this will be the first ever Christmas that I will spend away from them completely. I know in theory I could go over to them, but at the moment with me moving into my flat and everything I just don’t think I will be able to afford it this year.

I have spoke to Maddie and Morgan quite a bit and honestly this really helps, hearing what they have been up to and video calling feels like I am with them. I haven’t spoke to Tegan so much. I understand, but I miss her. I miss cuddling up with them all on the sofa, talking about superheroes or school, playing board games and the playstation with them. Even just sitting beside them basking in their presence.

It is not their fault in any way, it isn’t anyone’s fault. I am immensely happy and proud of them, I really really am and I would not want to take this opportunity away from them. I just wish it didn’t hurt so much to do so. I wish I knew what to do and how to process the feelings so that it wasn’t like this. I hate changes in routines and this has been one if the biggest I have had to endure. Just when I think I had accepted the fact that they had gone I am hit with the realisation that I will miss their birthdays, Christmas, I cannot go to school plays.

It makes me want to cry, retreat, curl up and immerse and stim so that I can forget about everything, but then night hits and my head is filled with trying to process it all. Its making sleeping difficult. I think this is also due to the fact that everything is changing right now and I need things to begin settling down. I need to build my routines and normality again so that it isn’t constantly in my mind. I love my sisters so so much, they turned my life around.