Release of words…

My thoughts have been more jumbled of late and I’ve overthought things so much that I haven’t written them down, I’ve been scared too and this doesn’t help. I need that release of words to get them out of my head to help in an odd way. I can’t pick up that phone and chat things through to someone who really understands, whose known me my entire life because I don’t have that, no sister (I don’t talk to her anymore) or mother (she died over 11 years ago) that gets me for who I truly am. I have friends but I don’t want to burden them because it seems silly, I don’t want to burden people with my quirks because I don’t truly understand them myself so how can I expect others to understand them or help me through, and to be honest why should they? People have too much going on in their own lives, to be occupied with mine. I like writing down my thoughts and sharing them because it’s like picking up a phone and speaking to my sister or my mum about random stuff and that it sort of helps me. I also wrote because of other people with autism that may feel the same way and if I was reading this I would be saying to myself, thank goodness I’m not the only one, someone else is like that too. It’s also easier for me to verbalise this way so that when I do have a bad day or withdraw myself, in my head I think people will get it because I have written about it and then in my mind I feel like I’ve explained it so it’s ok, it’s like a pass to express myself, and then I don’t feel too guilty about being down – in an odd sense! 

I stoped writing because someone complained about it and that made me feel very sad, not because of the complaint as such but the fact that they knew I was having a bad time and knew I needed support because they read through the lines but instead of asking me if I’m ok? They got someone else to check – they couldn’t check on me in a human contact way and I so would have preferred them to say, are you ok I’m here. Then that reach out, would have helped me explore whatever I needed rather than make things more complicated and make me lose my voice for a while.

I share these posts with online groups so I can reach out to others like me and, I read other people’s ramblings and it helps me it really does, so I’m not going to stop writing I’m going to carry on and if your reading this thinking oh my goodness here she goes again Kirilynn and her autism, well don’t read on…

I share these thoughts hoping it may be of use to others but the most important thing is it helps me rationalise them. I re read I edit and then I can process it making me to self regulate things, then I can switch off and sleep. It’s a bit like a to do list once you have written it you feel better that you know what you need to do. 
 I still have low days and bad days but I hide them or I hide away. I get physically and mentally exhausted with just the simple things of listening for a long time, focusing for long periods my mind wanders off as I connect things from one thing to another in a random order that it takes me off on a tangent then I have to do things in order to then get back on track, like hoovering the house or tidying a cupboard when really I should be doing something else. I need those rest breaks those movements to re focus me to get me back on track. 
What keeps me going my job, my children and my husband. I would be lost without the structure of these but I also need time for me to lock myself away and shut it the world so I can re focus and get back on track. So if I rush off or don’t spend time with you it’s not because I’m being awkward or rude it’s simply because I’ve in overload and I need to switch off, or need to process things quietly with no one else around. I don’t mean to be antisocial I just find it hard to socialise I have anxiety that makes it difficult unless it’s pre planned and pre organised, and I know what is happening and I’ve planned the route, the time how I’m getting there why I’m going and what I’m doing, how long I’m staying for, how do I say I’m leaving, etc..

I just need to write it down, and get the release of words out, then I can see it,process it, and understand it more clearly. 

I can shine…but not on a Monday morning!

I can shine…(I have to remind myself of that!) I have been reminded over the last 48 hours what makes me shine. What makes me be me and gives me that drive to do the things I do. I know I am difficult at times socially, emotionally and just awkward. Some of that is just me and my personality but some of it is my autism. Honestly if I could take it away I would, I envy people that can walk into a room make eye contact have their head held high and just work the room. But that’s not me and will honestly it will never be me. The days that I truly shine is when I am surrounded by people, friends and family who understand me and let me be me. I have found my home and I don’t mean physical bricks and mortar ( we don’t own our house and never will) but it’s more than that it’s the family I have around me and nothing is more important than my two children and my husband they understand me more than I care to realise they sacrifice things for me to do what I need to do, to work the 12 plus hours then the late nights of paperwork the odd shopping trips to buy randomness and the melt downs, anxiety and pure stress of trying to get things right. But they give me the time and space and help to do this. I could not be more blessed. And this other place can be so frustrating at times but then that is life and that is just people. But during the Fayre that I organise I am in my element I am shining, I am a trooper, and I keep going! I truly love seeing people enjoy themselves and watching people working together and helping the young people is truly inspiring. The young people also help me shine they take me for who I am they help me get things ready, tidy up etc.. but it’s more than that it’s humble, it’s genuine it’s not complicated there is no hidden agenda or selfishness. I really couldn’t do my job if it wasn’t for the young people I look after and each year it changes and keeps me on my toes, it’s refreshing. It isn’t sad when one year group leaves it is like watching birds fly the nest knowing that they can fly and reach the dizzy heights of the big wide world, knowing that our job here is done and we did our best. I really couldn’t be more thankful to have found a place where I can shine (well on some days!) maybe not a Monday morning…!!! 

Social anxieties and blocking out the world…can’t see the wood for the trees!

It’s that time of year when you have to go out of the house! I can’t blame the weather and hibernate….I have to adapt to the world outside my four walls! 

For me leaving the house can be an ordeal it’s a sensory overload and just so many people, smells, sounds and goings on I can literally hear everything the conversation of the two people across the road, the closing of shop doors, the scrapping of chair legs on the pavement outside the pub as I walk past. The smells of the market and the sellers shouting about strawberries, the traffic light crossing, the hum of the traffic in the distance, the crying child and the parents laughing, the girls chattering and the door banging and the scrapping of chairs and the market sounds…..it’s on loop it’s filling my head over and over again. 

To block it out I focus on things I try and look at the floor the lines or the shapes and make up a pattern or I think of something that I need, so I can focus on that instead like a list of shops to go in before going home to buy something specific so that way I have a focus on that instead but then I get too focused on that I forget what’s going on around me. It does works sometimes. I also get worried about meeting people today I had to meet friends and I had the family with me so that was better, Dan drove so that’s one less thing to worry about. I worry about parking, about remembering the route or the specific journey what if an ambulance needs to get by and I’m in the way or I startled by the sirens or someone steps out in front of me. I’m constantly over thinking. I haven’t been out properly in over a week in terms of lots of public so that’s when I’m at my worst really I’m also on holiday from work so haven’t had lots of people around either. I can’t sleep at the moment as I’m worried about going back to work it’s daft really because I love work! But it’s the unknown the changes that might have happened the getting back into a routine as I’m now in a slightly different one so it’s going to take me a while to adapt to people again! Today I was physically shaking which is crazy but I kept talking and blocking it out – I’ve learnt coping strategies over the years sometimes I’m better at it depends on the day! I have to learn to block out the world so I can be in it! I’m learning more about myself each day depending on the day some are good and some are not but that’s who I am now and have always been, just now with a diagnosis I have an idea why and it sort of helps. But I do feel alone sometimes, alone surrounded by people which I know sounds daft but it’s difficult to explain really. 

I’ve got to remember that to help my social anxieties I have to block out the world but not block out every thing around me, I have to open my eyes sometimes and see the world to help my social anxieties….! 😂😖😂 what’s that expression “you cant see the wood for the trees”?

Living with neurotypical people…

Living with someone not on the spectrum is as difficult as living with someone on the spectrum. In our household we are split in two: my son and I are autistic and my daughter and husband are neurotypical. I find it difficult to parent and be a wife some days and especially to a neurotypical daughter and husband – I can’t emotionally empathise with them and I get just as frustrated as they do with me for sure. I have a mind blindness and if I don’t feel it or see it then I don’t get it, but then on the flip side if I feel it and see it why don’t they?! I get so emotional I cry and release all my emotions at once and get caught up in moments that my husband and daughter don’t quite get and to be honest sometimes I don’t get it either. I wear my heart on my sleeve and can’t hide behind my emotions.

I need routines and structure I like to plan and organise things and it’s difficult to have an element of surprise and I know this can drive Tilly and Dan mad to say the least. Finn is also so much like me so it is like in full stereo for Dan and Tilly. 

I get frustrated with myself sometimes I can see what’s happening and unravelling right in front of my eyes but I can’t seem to change it or stop it, I feel like it’s out of my control and that upsets me!! I also feel I sabotage myself and miss out on things because I find it hard, I really don’t mean too but it is so difficult for me to fit in and absorb the world. I plan so much that the enjoyment is taken away from it as the only thing I can’t control is other people and that to me is like trying to train a wild horse in the snow! 
In a month I will be going to Ireland to watch Guns N Roses a band I love (next to Metallica) I walked down the aisle on my wedding day to sweet child of mine and going to watch them live is amazing I am so excited and nervous at the same time. It’s all planned I know where we are staying, where we are going and how we are getting there, but what I can’t predict is my mood and other people. I have golden circle tickets which for any fan is the ultimate but for me it fills me with dread (I booked them by mistake!) but it fills my husband with dread just as much as me but for a very different reason – he knows that I will hate it, have a moment and end up right on the edge of the whole concert miles away from the stage and not really enjoying it, but I want to enjoy it I want to be right up there listening to the band and absorbing it all but I know it’s also my worst nightmare as I will be surrounded by unpredictable people that I don’t know that I don’t know what they are going to do , just being surrounded by people scares me. It’s crazy really – as I know I can’t control it but all I want is to be in my own world listening to Guns n Roses focusing on the greatness of it all – but I feel nervous beyond words wanting to just enjoy it but it scares me. This is when I want to be neurotypical to fit in and not worry to be able to just go to an event and enjoy every minute of it not to worry about leaving before the crowds or where to hide so I don’t have a panic attack, not to make it awkward for my husband who I know all he wants is to enjoy it too without having to worry about me. I  get worried that I might not find my way around the concert it’s an outside event and I don’t know the place , what happens if Dan needs the loo and leaves me to then not get back to me. But for me the biggest regret / fear is that I feel sometimes he misses out on life just as much as I do, and that he lets me do things but knows deep down that actually neither of us enjoy it because we worry about the autistic moment.

I look around at friends I have lost as the my think I’m rude, stubborn or I just don’t fit in with them anymore and I feel that I have lost people and haven’t meant to do so. I will always just be on the edge of people and not quite fitting in my best friend is my husband and unfortunately I lean on him so much – he is my carer too and that makes me feel a little sad deep down and what makes me feel sadder is that my daughter is starting to be just like him – she knows what to say and be around me to look after me I’m 35 and she is 10! That makes me feel awful. But at the same time she has her dad and together they understand deep down and we can joke about it as you have too really otherwise we will all go mad! 

But living with neurotypicals for an autistic person is confusing, frustrating, annoying and trying but it helps us learn and realise that we sometimes have to fit in to the neurotypical world whether we like it or not!! And for the neurotypicals living in our autistic world is just as confusing, frustrating, annoying and trying but sometimes they have to fit into our autistic world to create this balance. 

It just means we all have to work that little bit harder than most families but we get there eventually!…. 

It’s been a tough couple of weeks I’ve struggled more than I care to realise. It’s been a sensory overload and I feel emotionally exhausted so much so that I feel like I could cry and I won’t stop. I have felt the most overwhelmed and over sensitive and feel everything, I feel that roll of the eyes, that odd look, that hurtful email, that comment when all I am doing is my job. I try so much to fit in and be typically so called normal that it’s just too much I feel like I could shatter, and to top it off it’s autism awareness week like I’m supposed to celebrate. Some days I do and I get it but other days I quite simply hate autism, if I could cut it out of me like an annoying growth I think I would on some days. I’ve had meltdowns at work and felt like I can’t cope that I’m on the edge but then I get the support of some understanding friends that say the right thing to make me put it all in order, and to top it of my lovely little boy puts it all into perspective this week too. 

It was the first birthday party for 8 years I was so nervous about it and full of anxiety. I organise events as part of my job for hundreds of children but doing this one event for my little boy had me in a emotional mess. He’s turning 13 has struggled with friendships not fitting in, bullied and tormented, high anxiety stricken by people and going out to the point of physical sickness. He’s had no friends and has always worried about his birthday. It’s been a rollercoaster of a little life bless him but he wanted a Lego themed pizza party for his 13th. I agreed bought a mini pizza oven, borrowed a milkshake maker and made a Lego cake and agreed for friends to come over. It was the most animated I have ever seen my little boy he was smiling ear to ear he had three friends over who played card games and were amazing with him. They were joking and laughing and just enjoying life it was the first time I saw my little boy as a happy little boy. After they left he broke down when he hugged me and it made me melt. I love him so much and to see acceptance from his friends is all the autism awareness I will ever need to share! 

Autism awareness, be just me!…

It’s coming to the time of year where it is Autism Awareness and it’s an odd one for me really. It’s been almost a year since my own diagnosis and I still feel overwhelmed by it at times.

It just all makes sense to me like a huge weight off my shoulders but then at the same time I am so frustrated by it, it weighs me down. 

It’s like being trapped in my own mind where I can see the words and acts travelling in front of me and I can’t seem to get it right. 

Life at times Is far too bright, too loud, too cramped, too detailed,  too crowded, too vivid, too intense and just sometimes just far too much. 

I feel that one day or one week shouldn’t be acceptance of autism it shouldn’t take that to make people understand and realise how I feel I can feel it see it everyday why can’t they?

Because they don’t live my life and the over sensitivity of what life is.

It is hard to try and make people understand as it is a difficult task when some days I don’t understand myself, let alone trying to make the world understand autism!

I feel too much, I see too much I am too much. 

I get tired over tired that I can’t sleep, I can’t switch off, I do too much because I don’t know when to stop, I have to keep going so I don’t stop. It’s just madness it doesn’t make sense. People often say to me I don’t know how you do it all but to be honest if I didn’t I would break. I feel that if I don’t plan things I don’t get things done and if I’m not planning and doing I crack. But I also need to stop and hibernate I struggle with too much interaction I need my own company and my own time to think and readdress life, but sometimes I need help with that I need people to stay to me just stop take time and just be. Just be you, your ok.

I’m worried I will crack if I keep going like this but worried I will crack if I don’t! I need some one to say stop sometimes. I feel on the edge or at the brink of just cracking completely. 
It like I need the world to stop so I can take a step off, breathe and then get back on. I need that breathing space to function.

But I also feel if I stop I might never start again and that worries me. I feel fragile that someday a I might shatter. 

But my autism makes me determined and that drive to get things done and I try harder than I should to fit in, to be accepted, to be liked to be just me,  but sometimes it is at a cost to myself.

But would I take it away? No as it is me and I am it whether I like it or not. 

I just have to embrace it, learn my strategies and coping blocks to get through each day and you know what, some days my autism makes me awesome! 

I need to remind myself of that so that I can be, be just me and embrace it and all that comes with it!!! 

Would the outcome have been different?

It’s that time of year again when I am reminded of a loss, a great loss of a mother that I once had. 11 years this year and it doesn’t get any easier with each year passing people lie they say it does but it doesn’t, you get reminders everyday. The days where my children miss out of having a grandma that could have been close by that could have asked them how their day was, would have popped over or picked them up from school and she could have taken Tilly shopping and played games with Finn, baby sat and for me and Dan and taken the children on days out and spoilt them. I feel that they miss out of a family member and I feel that I could have had afternoon tea with my mum and just chat about the silly things, that daughters and mums should, she could have bought me a top that I didn’t like but wore it because my mum bought it for me. I miss that thought of my mum. But reality probably would have been very different, who knows maybe we would have bonded more and she would have understood me because it wasn’t my fault I had a disability all along and that’s why we fell apart, that and her illness maybe my disability was too difficult for her? But it goes so much deeper than that it’s the thought of a mother I wanted and it’s that I miss that the most. I miss my mum.

Since my diagnosis I have gone through different stages a sort of loss that’s sparked because I can’t talk it through with my mum or anyone really no one has asked me how I feel about it all.

I went through an awful stage of memories and a reminder of who I am because of what I have been through and if people knew back when I was a child, would the outcome have been different? 

Then I went through anger, anger that they should have known back then and helped me, would the outcome have been different?

The next stage was guilt I felt guilty for my behaviours as a child and growing up and that my diagnosis wasn’t picked up and it was my fault, would the outcome have been different? 

Then I went through relief, that huge relief I wasn’t mad, there were times I didn’t want to live and looking back it was just because I couldn’t cope with being me, would the outcome have been different?

I am different I know I am and yes, no, maybe the outcome would have been different but it doesn’t matter because I am me because of everything that has happened and I have to live with that. 

And through the tears, the meltdowns the wobbles the shut myself away days it’s ok to be me and I’m now going through the last stage of acceptance and embracing me for me. (But only on a good day!)…

I can’t sleep…

It’s 12.47am and I am wide awake I can’t sleep. My brain won’t switch off my thoughts are spinning around my head it’s processing the whole day of sound, thoughts, conversations, to do lists, it’s a sensory explosion and it just won’t stop. It drives me crazy to the point the noise is unbearable. I can’t switch it off!!! It’s a constant humming noise that gets louder the more I try to block it out…..

Different…

Someone asked me how I’m different, and to be honest I don’t know anymore. I have always felt different slightly out of the loop. On the edge looking in – I hate the way I feel I don’t fit in I try but I always feel on the outside even when I know I’m not. I don’t really think anyone really understands me and to be really honest I don’t think I really understand myself and I don’t think I ever will. I don’t use my autism as an excuse but it really does override my emotions and I hate it for that. 

I feel an outsider in my own body and that’s really different. It’s all the social ques the social etiquettes and the social norms I just don’t get them, I know them but when I’m in them I don’t get it. I struggle and want to hide I always feel I am cutting my nose of to spite my face I can even hear and see me do this but can’t seem to stop it at the time. It’s only later I think of for goodness sake why!?! It’s like my ASD takes over at that point I can be really unpredictable in a routined way?! and those living with me struggle the most. I can see it on their faces and that hurts, all I really want is someone to say it’s ok and to give me a hug when I go off on one and to help me through it. I feel I have been battling and fighting my whole life and sometimes I want someone else to do that for me to take charge and just help me. But I’m my own worst enemy and I can’t let people in to help so people just leave me be.

I get so low and so down and sometimes I struggle to get back up. It’s a hard thing to say and a hard thing to write really but if I don’t I get consumed by it more. So it helps seeing it in black and white. 

Even when I fit in I don’t feel like it and I should. I feel like people get fed up of me and I don’t know what to do. I feel lonely surrounded by people and it hurts. I have friends and good ones at that but I miss a best friend someone to confide everything to and to share the highs and lows I just don’t want to burden people with my silly worries! 

Maybe in the new year I should learn to be me the real different me and just let people in?!

Social justification

I really hate going out I get so nervous on the run up to going out. I enjoy it once I have time to adjust to my surroundings and a couple of drinks help before that I real do struggle and I don’t think people realise it’s hard to really as sometimes it looks like I’m enjoying it, it’s my social filter it’s way off! 

I don’t want to go out and then I will change my mind about a hundred times and it can be frustrating for family and friends I know but I can’t help it I really do worry to the point it makes me feel ill.

I feel guilty about going out and then I feel guilty about staying in, it’s that people pleasing thing I try to please everyone and it’s myself that gets all stressed and nervous about it!! 
It’s where I have to be me, be the real Kirilynn, and sometimes I really struggle with who I am, I’m worried people will judge me and think that I am odd, or won’t like me and I think it goes back to childhood where I was bullied and had a difficult relationship with my mum. I never felt in control or that it was good being me I was always told I was different and it made me want to stand out in a good way, it made me more determined to work hard. I think I never became happy with me due to my mums illness and I work hard because I feel that I have to work hard to forget all the things in the past and not be like that vicious cycle and brake away from it, it’s almost working hard makes me feel of use and that I am justifying myself as a person. I’ve always had to work hard and feel bad I missed opportunities in the past because of circumstances. So that’s why I focus so hard on working hard now sometimes to the detriment of myself. It’s an odd situation really.

I feel like in social situations I struggle and cut my nose if to spite my face and that I ruin things because I find it difficult so it’s better not to do it, or for people not to bother. But when they do it means the world to me as I feel like I am worthy. 
I don’t like being penned in, eating in front of people or being around people, it sounds horrible but I’m normally very tired and fatigued with trying so hard to fit in that I feel panicky and awkward. It’s a sensory thing I hate hearing people eat too and general noise can be an issue for me, I’m over sensitive with noise, light and sensory overload or the way people speak or the way people are.

Recently I went to a concert I never buy carer or disabled tickets because I feel bad at taking that space away from someone who needs it, but the matter of fact is I do need it but can’t accept this. I managed to get my seats moved to the edge of an aisle and that made me feel a lot better but it was people around me that made me feel uncomfortable.

I have panic attacks and feel claustrophobic and struggle with people as I can’t predict how they are going to react. It sounds daft when you say it out loud but I really do struggle with this. I’m worried I might say something wrong or do something wrong or get caught up in a situation, that social chit chat is hard too I have to try and listen and take note of what people say I get confused with names even though I know people I self doubt my memory!! 

I just feel awkward and in the verge of meltdown which again sounds daft but my meltdowns are like when I get agitated and panic so I have to leave it’s hard to explain I sort of loose my patience and react in a way that is rude at times and I can see myself doing and saying these things but I can’t seem to do anything about it. I know this frustrates my husband and family a great deal!! 

I’m better when I have my son with me as I know he has difficulties like me so it is easier to put all my focus on him and help him that I forget about myself, but I can’t always take my son with me!! 
I much prefer to stay in play games and snuggle on the sofa but I know that you have to go out and do things so I try really hard but I don’t like it deep down but know I will if I went out and my husband says if I stop going out I won’t get asked again and then this hurts as sometimes I don’t want to go out but I hate not being asked because I like to feel included. I work so many hours that I am always verging on burn out so that’s why when I am off I want to hibernate.

I feel bad about family gatherings and especially Christmas because I’m not in control I don’t know when things are going to happen there is no structure no routine and I think that is the main problem really and that I never did that as a child so those building blocks are not there.

I’m ok if I’m organising it because I am then in control, but if I’m just a guest I’m not in control and I don’t know what to do, I think it’s because I don’t know how to be me or how to relax and unwind. I feel like I have to busy to keep going to feel useful. 

Writing it down makes me realise that, is my main issue, I need to feel that I am helping in some way that I have to justify myself being there or being invited I find it hard that people like me or want me there and I feel like I have to constantly justify myself to others.