Christmas and New Years celebrations…

So it has been a little while since I have had a chance to do an update so lets begin with Happy New Year! This Christmas and new years has been both amazing and the most difficult I think I have ever had. I have loved spending time in my very own home, having my auntie round for the day and just spending time with Justin and my friend Brogan but it has not come without its difficulties. I have missed being with my sisters, in fact held out on sending their presents because I couldn’t handle the fact that I wasn’t seeing them. I have also struggled with potentially loosing people whom I love dearly, I am still holding out hope that things get sorted however I am not sure how.

Christmas and New Years also comes with challenges that effect my autism more too, the change in routine is always tricky. I love having the time off and it helps that the nursery closes over this time so I cannot worry about it but it is still an adjustment, however the hardest part by far is all the additional social aspects are involved. For example, Christmas or ‘non’ Christmas (long story and totally not worth explaining) as it was this year, with Justin’s side of the family. They try remarkably hard with me and I appreciate it greatly so I don’t wish for any of this to come across as ungrateful because I honestly appreciate everything they try and accommodate with me such as my eating and fussy ness with foods etc. This is purely to explain how difficult this change and added pressure socially can effect autism.

I always put a lot of pressure on myself during events like these, I want to come across ‘right’ I do not want them to think I am rude, I want to try and fit in with them as much as I possibly can, even deciding what to wear is a huge challenge even though it really shouldn’t matter. I always worry about what judgements are being made of me, especially as quite frankly before me they had very little idea or understanding of autism and I still don’t really know how much they understand or if they just think I am being awkward. Its hard to just say lets sit down and talk about it, explain my autism. They do the best they can and that’s all I would ever ask of them. His aunt, whose house we went to offered me the use of the spare bedroom to escape if things got too much for example, which is so thoughtful. I hate feeling so different sometimes and needing things like that but I know that I need it, just hate feeling secluded.

The hardest thing is always the multiple conversations going on and I find it so hard to join in and stay focused on just one. When this happens I just want to sit and read or play a game on my phone to escape and focus on something but I know that this is frowned upon and looks like I am avoiding joining in and making myself less social but it honestly just a coping mechanism, a way of targeting the anxiety and potential melt down. The noise level is intense and I always end up sitting there feeling anti social, plus the games that we play always end up resulting in some sort of disagreement which raises the noise level further and they are forever changing the rules and adding things in as we go which literally makes me want to scream. Games have rules. These should be followed. I know they are doing it to keep everyone happy and they just love making up games and quizzes, its part of who they are as a family and what they do. Honestly how Justin ended up being more like me is beyond me.

It hadn’t helped my case that I had been up since 4 in the morning, most likely because of the anxiety I had built up over going, and once I wake up my brain starts churning and it can be really be hard for me to fall asleep again. I ended up coming away from the day absolutely exhausted both mentally, physically and autisticlly.

The next day then resulted in me feeling physically ill, huge headache, dizziness and sickness. This quite often happens after such an intense day. Dreams end up super intense and I don’t sleep well, do not end up rested. It doesn’t help that on top of this I am weaning off my anti-depressants and if I go too many days between taking them I start going through withdrawal, which also makes me feel ill.

New Years Eve was better. Justin’s mum has got so much better with understanding my autism and trying to accommodate me so she worked hard on making her game as controlled as possible. I took my ear defenders just in case too and having these with me made me feel more comfortable. I just wish that events like this didn’t make me feel the way I do. Its not like I do not like being social, sometimes I can be really social but I never know how it is going to go, or how I am going to feel or if something is going to trigger a meltdown. Its seems to get worse as I get older and retreating into my bubble is easier and feels safer. The people who I have in my life like me for me and I don’t have the same intense desire to be like them, so therefore doing the things I am comfortable with just seem even more appealing now.

I endeavour to get back into the flow or writing these blogs interests and have some very exciting and interesting news in my upcoming entry.

What I would like to do next…

I continue to love writing my blog and sharing my thoughts and experiences, I hope it is helping to educate others further on what autism can look like and how it can feel to be on the spectrum. I want to do more. I know the system will never be perfect and there will always, unfortunately, be people whom are missed either because of how high functioning they are or because the signs and symptoms in girls can present so differently than what people expect but I want to help bridge the gap.

I try hard to share my knowledge and my experiences within my career to try and support this but do not feel like I am in the best position to do this. I want to be utilised more, be able to train and support fellow childcare workers, parents and children.

Ideally what I would love to be able to do is to go into different settings such as nurseries and schools and train team and parents on what these traits may look like. How to not let females with autism slip through the cracks like I did. Allow people to have more confidence on what ASD looks like, and not just in the most severe cases. I know as a practitioner it is not my position to ‘diagnosis’ but my position is to support, and no matter whether a child ends up being on the spectrum or not if there are difficulties identified then it is still my job to support and educate, and many things can help a child. Having a diagnosis makes no difference to me but being able to talk openly about things such as therapies, strategies, and actually still educate on what ASD can look like is still vital.

I believe to my core that early intervention is crucial for supporting children, especially those with ASD or whom have shown any traits. Any support that can be put in place such as teaching social skills, communication skills, understanding a child’s own ways of reacting and dealing with situations such as sensory processing etc are vital even if a child doesn’t have ASD.

I think people often think because I am autistic I see autism everywhere. This isn’t true. Yes I can often notice when a child or adult seems to struggle with things I know I do, and yes I can often see past the initial behaviours and see why something may happen and yes I often create close relationships with children who have any form of additional needs but maybe that’s because I understand what it is like to be misunderstood. At the end of the day a child’s diagnosis or non diagnosis does not bother me one bit, supporting them does. No matter what. And yes, the chances are that I can pick up on the more subtle signs of autism, but I do live with them everyday! I should be able to use my skills, my knowledge, my experience to help support. I have a unique and insight that others cannot physically have, no matter how much they have studied something I live with it! I want to be able to use this skill. I want my autism to the positive it should be. I am lucky enough that I can communicate and talk about my side of things, that I want to share my side of things, I want to be able to use this and not feel like my autism is a negative. Not be made to feel ashamed of having autism, and most of all I don’t want anyone growing up to feel this way either. I want them to be able to feel proud of the positives that do come with being on the spectrum. I want them to at least have the option to share without judgement and accusation.

Living with AUTISM!

It can be hard for people to see the difficulties I have every day seeing as so many of them I mask or are internal battles which I face. On the outside, the majority of the time I come across confident, knowledgeable, functional…just like everyone else.

Noone sees the constant battles that go on within me all the time. I overanalyse every situation because I am so afraid of getting it wrong, not being like others and messing things up. I know that people battle their own demons all the time, and I by no means thing having autism is the only way and the reason that this happens but think of everything that runs through your mind during the day and then magnify this, include the inability to read a situation easily, the social anxiety that comes alongside, knowing that at any moment the sensory overload or buzzing within your brain could result in a physical and distressing melt down causing you to hurt yourself, feel overwhelmed, loose ability to speak and a magnitude of other feelings.

Whenever someone makes a comment to me I worry about the response I am going to give. Will it be the one that they are wanting? expecting? Will I end up making a joking comment that isn’t actually understood or funny. More than likely I will over talk, or end up talking about one of the things I immerse in. The only time this isn’t the case is when I am dealing with facts. Facts are true. I cannot mess them up. This is why my confidence, until recently, has always been at work. I know what I am expected to do, what I am supposed to do, what the right answer is. Therefore I can answer questions about what to do, or how to do it. This is safe for me. Every other conversation I have comes with a level of anxiety, of hope that the person doesn’t think I am weird.

People with autism are often thought of by having a lack of empathy. This couldn’t be further from the truth. I recently came across a meme that said “We do not lack empathy as people know it. We lack COGNITIVE EMPATHY. That is the ability to predict other’s thoughts and intentions including the ability to read between the lines during communications. We have plenty of AFECTIVE EMPATHY which is the ability to share another person’s feelings with them. We have plenty of COMPASSIONATE EMPATHY which is the desire to help others (though we may not always know how). In fact many of us have TOO MUCH affective empathy and compassionate empathy which can be overwhelming for us.” This is one of the truest and realist comments that I have come across in regards to how it feels to be me. There have been so many times where I have had the best intentions and all I have wanted is to do what’s best for someone or to help them that have resulted in me falling flat on my face and in fact often make the situation worse. There have also been many a times in my past where I have been used, abused and walked all over by people whom were supposed to be my friends because I care too much and will do more than I should for people, and I would do it all again in a heartbeat. There are positives to this too though, I believe it is this that makes me as good with children and at my job as I am. It means I will walk to the end of the world for the people in my life I care about and who I love. It means I wont give up easily on the people I care about most, in fact I physically can’t.

Living with autism feels like I am always trying to curb myself and hold back from the person that I really am in order to fit with the norms of everyone around me. It means keeping thoughts to myself because I do not know how people will respond and its just easier trying to please everyone rather than having to handle and deal with confrontation. I have tried as I have grown to do this less. Let myself be me, speak my mind more. Sometimes this feels rewarding but sometimes it feels like I should have just played the game and not argued my point. I know I can be overly stubborn at times and it can be hard to read what is actually something I should be standing up for and what is something I am overreacting over because of what it means to me personally even though it may not be that important to others. For example, if you tell me you are going to do something, come and see me, pick me up at a certain time, even make a certain thing for dinner etc and then can’t I will not be able to handle this unless you have an amazingly good and rational reason, and even then I will find it difficult to deal with.

Having a brain that overworks constantly results in times where being alone and immersing is all I want to do. Is all I can bring myself to do. I cant handle being touched, being social. I am physically and emotionally drained and my nerves are literally frayed making even the smallest touches feel painful, having to concentrate on any conversation a challenge, a nuisance even, for just a little while I need to not worry about anything or anyone else. Often I meet this need through reading, if I cannot watch something, like fanfiction on my phone. Just a short period where I can immerse in a story and then I can deal with the real world again. The only problem is when I am so emotionally torn I cannot shut my brain down enough to do this and this is when I will lash out, verbally, or start stimming or even have a meltdown. Its not that I need to shut myself away from people, especially those close to me. They can be right there with me, but I just need a moment to try and quiet my brain and give myself a chance to catch up with all the processing I have had to do, allow my senses to get back on an even kilter.

Living with autism is not at all easy, and I will always face greater challenges than others and I will forever to lacking in understanding of social skills but every day I get up and I try. I try to be the best early years teacher I can be, I try to be the best friend I can be, I try to be the best fiancée I can be, I try to be the best person and version of myself that I can possibly be. I will fail. I will struggle. I will not always meet your expectations but I will always continue to battle forward. To stay strong in my strengths and to strive to educate others. I will always live with autism, but everyday I will remind myself that AUTISM IS MY SUPERPOWER! Every superhero has struggles and powers come with as many issues as they do blessings. These are mine. Always.

Happy birthday to me…

Birthdays have always been a bit of a conundrum to me really. One huge aspect of me hates them. I dislike knowing there is a ‘surprise’ coming (does it count as a surprise if I know its happening yet do not know what it is?). I want to know what people have thought of when they think of me and therefore the presents in this aspect, its nice knowing that people know you and the thought that goes into it but the anticipation of presents is awfully frustrating. Opening them in front of people also isn’t very enjoyable. I hate having all the attention on me like that, plus I am not very good at masking my feelings so what if I genuinely don’t like the gift? I wouldn’t want the person to feel bad but I am afraid that my face and actions would give it away even if I tried my hardest not to. I utterly hate the attention from others that birthdays bring and yet am devastated if people do not wish me a happy birthday or acknowledge it. Yes this makes no sense. It gives me pleasure and joy and love knowing that people are thinking of me and care enough and shows how I am fitting into this world when people say happy birthday and care which is a huge achievement and sign of success to me, I am making friends. Yet the attention and the obligation on my birthday to be uber happy and want this is difficult. Things like facebook and messages help, people can show they care enough to wish me a happy birthday without the need for me to be in everyone’s physical presence. It tends to be why I take my birthday off work. Not because I don’t absolutely love the people I work with but this way I can spend it with people I am closest too and feel less obligated to pretend I enjoy the attention around.

There is a high expectation around birthdays to do something amazing, and who got you the most amazing present but honestly this isn’t me. I am happy to spend time with the people in my life, do something simple and spend the day basically doing the things I love such as watching the films I like or reading for a while, and as far as presents go I care about the thought that has gone into them. I like knowing what people think of when they think of me, what made them get a particular thing. I love buying presents and thinking of peoples interests, likes and sentimental things which they might find touching. Buying other people gifts and celebrating their birthdays is so much better than my own! Maybe this is why I prefer Christmas… because its more for everyone.

Birthdays aren’t exactly the happiest time for me in recent years either. Just before I turned 30 I took an overdose. I couldn’t handle everything any more and I have such high expectations and routine with how I wanted my life to be and I didn’t know how to adapt to that not happening. Now every year I am reminded of that. Yes I see each year as a step forward I have taken and it shows how far, and how quickly things can turn around and yet it also still reminds me of that time, every year older I am I still have to squash some of them thoughts and expectations for myself. Convince myself it is okay that and I have time for the things I am still working on even though I feel like time is ticking away. This will always be a challenge to me and something I reflect upon on my birthday, I don’t think that will ever change. It does get easier with the help of those closest to me and it doesn’t suck me in like before. I think its important to realise that although something we celebrate and should, birthdays for everyone are not always such a joyous affair. Sometimes it does hurt to get older for whatever reason, or to celebrate without someone you thought would be in your life forever. That’s okay. It doesn’t mean that every year is going to de as hard, but it doesn’t mean you can not take the time to reflect and feel this on the day too.

This year there have been other reasons why I have struggled a little too, which I have touched on within the comment above. Sometimes people who you thought would always celebrate with you don’t for whatever reason, for example this year has been the first year that all my sisters have been living away from me and I haven’t been able to see them. They called and sent me a card and this was absolutely amazing. Video calling them put a smile on my face and even just seeing them made such a difference but it is still difficult accepting the change and being okay with missing them like I am. It will always leave a little hole inside me but every time I see them, or talk to them its a little easier to manage.

There is one other person this relates too but I am not going to get into this too much as it is unfair on the other person but its been difficult not having them around. Yes, part of this is due to my love of routine and familiarity but its so much more than that and I wish I could make them understand that. I spent the whole of day hoping and wishing for a message, or them to come over. Even watching the film I wanted to see yesterday at the cinema reminded me of them and I had to fight back tears (btw Frozen two is very very good though!). I felt like the whole day was tainted with my inability to let go of this persons presence, so thank you to my partner who still worked his hardest to make it a day I could enjoy, and to my close friends for understanding.

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.