My autism and covid-19

I know that everyone probably cannot stand to hear the word coronavirus or covid-19 anymore and I am right there with you, but unfortunately it is such a part of the world right now that not addressing and for me personally writing about it helps me to assess how it effecting me and allows me to figure out my own mind.

If I am honest I am not worried about coronavirus for myself, the illness itself. Of course I would absolutely hate to pass it on to anybody and I completely understand the worry everyone has but the aspects that are effecting me are not the idea of me contracting the virus personally. Its the unknown. The uncertainty that rises from all of this. If there was a set time scale then I could adjust around that, the problem is everything changes day by day, hour by hour and I cannot be logical or practical when right now quite frankly the world isn’t being either of those things.

Obviously working with children there was been much anxiety from parents, team and questions that I feel unable to answer. Thankfully being at work keeps me grounded. It gives me the routine that I need to carry on and keep myself from over analysing too much. Work is my role, it is my stage and I am there to be able to support my team and parents, that is my job description. Therefore during the day I am fine. I am worried about my team of course, I do not want them worrying or being uncertain but I cannot give them all the answers that I know they need. Everyday I am spending the majority of my time ensuring that they know I am here for them and that I honestly am so proud of all of them for coming in every single day and ensuring the children we look after are well cared for and that they continue as normally as possible.

Being in the education field this past week along has been mind blowing, everyday new information emerging about what we should be doing, how we should be doing it but none of it particularly clear. No set guidelines just suggestions. This has been the hardest aspect. It is so scary to watch the children that we care for slowly dwindle down in numbers as parents make the decision to abide to social distancing in order to help prevent the spread, and now to figure out who qualifies as key workers and see our numbers drop even more. It feels completely unrealistic and more like something that I would watch in a movie. Monday morning is going to present the strangest moment to me, for all of us. I am grateful that we are staying open and I know that this isn’t what everybody has wanted but the stability of still having work is so important to me, and of course health comes first but unfortunately the world cannot completely shut down as these key workers (education included) are still required to help keep everything functioning. I have already had so much disruption in my life and plans fall through that being able to attend work for now, in as safe a manner as possible is a blessing to me.

So during the day I wouldn’t say that the whole ordeal is effecting me too much currently in regards to my autism, getting home in an evening and dealing with everything else that is being effected however is. When I get home at the moment everything seems to hit me, the stress and burden of the day and everything I have had to compete with. I feel the need to retreat, give myself a moment and just be for a while. Immerse myself into a book or fanfiction or watching something just for me, being on my own and trying to block out the over sensory aspect of the world. I feel terrible for Justin as he needs to be able to vent and talk about it all too but right now when I get home I just need an hour or so to myself to be autistic. To be able to cocoon myself, block myself of from the world for a while. He has, as always, been amazing with it but I still feel bad about it. He is working hard to help keep my routine as familiar and regular as possible and I appreciate it so much! I wouldn’t be getting through all of this without him.

Shopping has taken on a whole new level of anxiety and the last time I went I was battling of sitting on the floor in the supermarket and having a melt down. We always go shopping at a very similar time and when it is quieter, as this makes it easier for both of us really. We also do a weekly menu for what we are going to have for dinner and then a shopping list. We buy what is on the list and very rarely deviate from it. Obviously at the moment that isn’t possible. I can not predict what will be on the shelf or work out a dinner plan and I do not like the disruption of it all. Again, Justin has been overly amazing with this even going as far as to ban me from going to the shops with him so that it doesn’t add any additional pressure on myself, last week he also kept the list himself and didn’t tell me he was changing what we were getting, or adapting the menu until we got home so I didn’t know things were any different to normal.

On top of all of this and as a last point to make I am devastated that my sisters can no longer come over for the Easter holidays. I absolutely understand why it is best to not fly and the reasons why but I cannot get the other part of my brain to stop being so upset by it all and think rationally. I hope to see them soon, and am so glad to have the portal in order to facetime them as often as we like.

To everybody, keep safe, do what you can to ensure your mental health is supported throughout this unsure time, be strong and know that we can get through this! (plus if the avengers can sort out the snap and Thanos then we have totally got this!)

New jobs, getting married and wedding dress shopping!

Since my last update lots of things have been happening in the life! Firstly I left the job I had been in for the past 12 years and started working at a different nursery in the role I have always wanted! This wasn’t an easy thing for me to do as I don’t like change and quite frankly I like knowing what I am doing, the rules, policies and procedures etc but I knew this was something that I really needed to try for myself, challenge myself to do.

It has been two weeks since I started and I am absolutely loving it. I thought I was going to struggle a lot more with everything than what I have but so far things have been pretty smooth for me. The team have all been very welcoming and friendly and I have been able to take quite a bit of leadership in how I do my role which has been amazing and I am looking forward to working with the team and supporting them. Don’t get me wrong it hasn’t all been easy, getting to know a totally different way of doing things, creating new relationships, trying to remember everyone’s names and just getting used to things being different has taken its toll on me. By the end of my first week I was exhausted, not because the job has been physically taxing but because mentally I have been trying to take in so much, adapt my ways of thinking (which is never easy for me!) and throw myself into the role. By Sunday I had a headache and honestly just wanted to curl up and be in my own bubble for a while, however this weekend although I still feel more tired than normal I feel nothing like the effects following last weeks.

The team have been absolutely brilliant when I have mentioned that I am autistic too and really don’t see it as a negative which has been amazing. In fact most people I discuss it with are really good with it, but there will always be some people who don’t understand. The team have been interested in what that means for me, being autistic and have opened up about themselves too which has been nice.

The next big thing in my life right now is the fact that I have booked my wedding!! For this July! Yes, I know this means it is only 6 months to get everything ready and sorted but amazingly I am not feeling overwhelmed with it all or anything. We are only having a very small wedding with less than 30 people at the main ceremony and then less than 100 for the evening. This makes it much easier. I wouldn’t feel comfortable or be able to cope with a large wedding. It would be utterly overwhelming and I would not enjoy a single moment of it. We have had some teething problems to begin with (future mother in laws hey!) which triggered some autism melt downs and me to wonder whether I can actually cope with a wedding or not but these have all been sorted (and weren’t as major as they felt at the time). Now the venue is booked the rest has fallen into place quite well, I probably shouldn’t say that for risk of jinxing the whole thing but I am feeling happy with the process so far. To be honest I have left Justin in charge of the logistical bits (organising the registrar etc) and I have been focussing on the fun bits that are going to make the wedding personal to us. Etsy has become my new best friend and I have found loads of things that I want for the wedding. Probably as no surprise to everyone I am having a marvel (lets face it mainly Iron Man) theme but in our own way. For the colour scheme rather than going obvious with the red and gold theme we are going with my favourite colour, and Iron Mans arc reactor colour blue! I am so excited!

One of the things I have been most dreading with this whole thing is wedding dress shopping, its just not a bit of me. I have found a dress I like (online of course) but my friend Brogan (who might I add has been outstanding through the wedding planning so far!) said that I had to at least go and try some dresses on to get an idea of what I wanted, what suited me etc so last Saturday this is what we did. We went to a place in Chelmsford where you don’t need to have an appointment, its a little more relaxed and you can walk around and choose dresses yourself. Well anyways that part was fine. Brogan knew what sort of thing I wanted and it didn’t feel too challenging. Then I realised I needed to try them on, which in theory isn’t too bad, however then I realised that as its wedding dresses and there is all the silly under petticoat rubbish that comes with wedding dresses that someone, someone I do not know, have never met is going to want to help me put these dresses on, see me in little clothing and potentially touch me. I could feel myself panicking a little at the thought of this and decided that the best thing to do was be open and honest with the lady and although I wouldn’t say I enjoyed the experience of trying them all on it was immensely better than I anticipated and I was able to gain an idea of what I liked, what looked good on me etc. I don’t want to go to any other places (even though I know I probably should) but at least I can say I have done the experience and hope the dress I order online works out!

I am looking forward to marrying such an amazing man, a person who genuinely sees me for everything that I am and looks after me, loves me in a way I didn’t think anyone ever could. I never believed that anyone would want to or be able to put up with me long term, there are still times when I worry that it is all too good to be true and eventually he will realise that I am not worth all the hassle but I trust that what we feel is real and I know we are meant to be together. I couldn’t imagine being with anyone else, spending any level of extended time with anyone else! As an added bonus I also wont now have a surname that puts me at the end of the alphabet! (not that it matters because I am not at school being sat alphabetically but still feels good to know I wont be a w anymore!)

I am sure that I will be writing much more as the wedding planning progresses and I am hoping to get back into regular updates now things are more settled from changing jobs.

Dealing with loss…

This is particularly hard hitting to me right now and something I will never truly be able to explain the complete magnitude of.

If I’m honest I find dealing with people leaving me terribly difficult. When I love, I love wholly. I struggle to let go. I love my brain, and my memory for so many reasons but I really hate the way it makes me with the people I let into my life. I cannot forget them, I cannot move on from them. My best friend from primary school still bounces round in my head, I still have the same love for her that I always did have. This means it is incredibly difficult for me to move on. On top of this I struggle so much with change. It is one area that I really wish I could change about myself. I am not by any means saying that others do not struggle but honestly I know the way I hold onto people is beyond what is considered typical, normal or healthy. I guess its a blessing and a curse. It takes so much to make me walk away from a person or to not keep forgiving them over and over again even when sometimes people tell me I shouldn’t, but it also means that I cannot move on, not fully anyways.

This is probably going to sound absolutely crazy but to me dealing with the loss of a person by death is actually easier than dealing with someone leaving me. Death is more logical. It doesn’t mean it doesn’t hurt like hell at all but I cannot change it. I can miss the person and actually that’s okay. Its allowed. I can miss all the moments we could have made but I cannot change the situation. I can process and come to turns with this. When someone leaves me I am forever missing out on the moments and the new memories that we could have been making. I have to live in a world where I know they are in, without me. I have to know that I am never going to see them again, or maybe I am but they will never look at me the same way again. Never want me as part of their life. I have to live with the fact that it has once again been the case that I am too much for people to deal with and they have walked away from me. I have to live with life knowing once again something I did was enough to drive someone away.

I live in a world where eventually everyone seems to walk away from me. I really do try. I think I am a good person. I give my all and try to be a good friend. I know I can be intense at times. I am obsessive. I don’t always see things the way that everyone else does, I know that. It makes me stubborn and means I don’t always know what to do or how to respond but I also would do anything for the people I care about. Sometimes I really think I have broken the curse and I think I have found someone that really seems to care about me, want me in their life for me, this can even last a few years, I let my guard down and truly start to believe that this person wont leave me but then I guess I become too much. Dealing with the way I can be is draining, mainly because I can be literal, I don’t always see the things or feelings that people think I should and I guess it gets too hard to handle. I do not mean to mess up. I never mean to make you mad. I never intend to misunderstand or be too much. This is why I hate being so naïve and open to people and as much as I try to not let people in I struggle even more to not see the good in everyone. I want more than anything in the world to be accepted and loved. Loosing people makes me doubt everything in my life.

I love Justin with all my heart, I really truly do but I am still petrified that he will eventually feel the same way that everyone else seems to. That I will be too much for him too. The only blessing I have is our mortgage. I know that sounds terrible but whilst we have that contract at least I know he cannot just leave me. It means I will always have a chance to fix things and make things right. It means that I always get a chance. I hope it means I can always make him love me. I don’t know how to keep anyone, something tethering us together has to be better than nothing right? Anything to keep someone whom I love close.

Big changes…changing jobs!

So this week I am writing about something particularly big for me…I am changing jobs, leaving the company I have worked for what seems like my whole life. For so many years now my life has revolved around my job. It has been the one stable(ish) part of my life. My main obsession, immersion and focus. The one thing that I have relied on as my means of being ‘normal’ ‘functioning’ and its the one thing I have always believed to have been good at, no amazing at. I know I am good at working with children, I am good at understanding children, supporting them and recognising their needs. Making the decision to leave has not been easy, and it has not been something I have come about lightly. I like the consistency, I don’t really like too much change either and I know this role, policies and procedures inside and out and I like that. I like knowing what I am doing. I like being the person people come to for answers because it means I am doing my job well. Leaving means starting somewhere knew, having to have new people get to know me, having to retrain myself and learn new ways of doing things, but I am ready. I never thought I would be what I am.

Things in my current job, well haven’t been ‘right’ for a while. I do not want to go too much into things as this isn’t professional but I am not being treated the way I should be anymore. I have done all I can do, tried my very best to prove myself but I have to accept that it isn’t enough. Now I am finally fulfilling one of my dreams. I have wanted the position I am now going to do for as long as I can remember. I wanted where I currently work, but it isn’t to be so I have finally taken the plunge and am moving. I never thought I would be able to do it, leave, I have loved the company I work for. I didn’t think I would ever walk away, I am also rather stubborn and part of me didn’t want to walk away without proving my point, without showing them that I could do it. I always thought I could manage it. Could go against the grain and come back from my past, overcome the assumption that because I am autistic I cannot do it but I have realised that I am still doing that. I am still achieving, I am doing what I wanted with the company knowing I’m autistic, praising my autism, seeing how passionate and knowledgeable in my field I am and it being exactly what they want without having to change a thing.

When I handed my notice in, I thought I would feel the regret and unsureness that has arisen any other time I have considered leaving but this time it didn’t happen. I felt happy, content and I knew that this was the right decision for me. I even went back to cover at the setting (within the same company) that I started at and worked at for 11 years and if anything was going to make me regret my decision it would be going back here, but I didn’t. It felt nice to go back, like a final goodbye, a way of letting go or everything. This was the building that I literally saw as my home for the majority of this time, the place I had the best and worst times but I always saw as my safe place. Being here was everything to me at one point. I met one of my best friends here. I am ready now. I am filled with excitement and joy and the realisation that I can do and be what I want to be. I can achieve the things I want to in life. My autism, my mental health and peoples perceptions can not and will not hold me back.

I have met some of the most amazing people within my time working for this company and I will be forever grateful for every person I have worked with, I have become a confident and capable practitioner through all of my experiences and I will be forever grateful for this.

I am sure over the next few weeks I will be writing more about work, how I am feeling about everything and assessing some of the things that have taken place, effected me and how I have coped with everything.

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.