I have a problem…with my phone!

With the crash at Facebook, WhatsApp and Instagram last week showed me was how much I spend on my phone…and yet I can’t seem to put it down. With the world that we live in, our phone is probably the most helpful thing that any

I bought a new phone three months ago to which I absolutely adore. Got it online rather then going to the shop, made me realise by going into a shop, they only offer a little choice in terms of contracts when online you have many options. That can be intimidating for some people but if you take the time to look at them, there’s always gonna be a few that will suit you. I also bought insurance for it, which I’ve never done before but given this was initially a updated version of a iPhone, for me personally it was needed. I am usually good at looking after phones, but I wasn’t going to take any chances. See, I can make adult choices! Anywho, I love my phone, but I’ve realised that I spend too much time on it. Particularly just scrolling, constantly scrolling. I’ve learnt recently that scrolling for a certain amount of time is considered to be an anxiety thing. Social media being the trigger for me. Most of the time, I’m not really missing anything. But it’s also where I get the news and to keep in contact with people. Not that I actually do that much. The people in my life all use different messenger platforms and I can’t stand that. It would be easier if they all used one so I don’t have to bother with other ones, but of course that would make me look like a right D. It’s no wonder people still yearn for the Nokia 3210!

I got my first mobile phone when I was fourteen. I know, fourteen! Nowadays, kids get iPhones when they eight! My school was really strict when it came to phones. Originally, they had to be put in the class cupboard. If I recall, I think that got dropped because it didn’t allow for us to be trusted and also because someone could easily go into the cupboard and take it. So that the changed for our phones to be left in our school bags. That way, the school couldn’t be responsible if the phone gets lost, and as far as I can again recall, no one would dare go into someone else’s bag. Which is weird to me because I’m sure many would have been tempted. Come to think of it, that’s certainly a way to learn about boundaries. The old days of the internet was a weird but in a way, a simple time. The dial up…oh memories. MySpace, oh my emo identity crisis is screaming with happiness. Then Facebook became massive where we would constantly posting our life stories as if it were diaries. Now that we have those memory pages, I cringe every time I come across an old post of me trying to be funny. I guess I was looking for validation in my life, many people would have done. They still do. That’s certainly the biggest love/hate relationship that social media has. It’s wonderful when it’s generally reciprocated, or you will be absolutely alienated. We will certainly have those experiences. The world has changed since the days of MySpace and technology has expanded so much, to the point where the internet has become exciting, but also pretty scary. Just the other day I was conversing with a friend about game currency, how easy it is for kids to sign bank account to and because of that there are children that have gambling addictions. You never think that could happen but it does. There’s no proper control because people generally don’t know how it all thoroughly works, and social media has the same problem. It does make the whole thing rather off putting and often makes me feel frustrated sometimes.

I don’t like that I look at social media so much yet I can’t seem to stop. I have proven that I can live without it before a few times. The longest I lasted was I think was about three weeks. Mainly to avoid Avengers spoilers. I hardly post on Facebook nowadays but I came to the realization that no one actually cares about crazy shit I have to say. That’s what this blog is for(!) I still have a FB page for this blog but again I hardly use it. I would delete it if I could but for some it’s an access for to get to the blog. I like going on Instagram and Twitter, I actually learn alot more from those platforms. But again I hardly post now, it feels more anxiety prone. You go through this battle of should I post this and how people are going to react. I don’t bother mainly because I can’t be bothered. I would like to take a break from social media which I think will do at some point. When the main what I’m going to call Zuckerberg platforms crashed last Monday, I weirdly felt a bliss of relief. I’ve never had that before, which kinda proves that I can live without it. I’ll make it a goal at some point.

Just be you, Sarah x

Stressed with Busy Days!

My diary is getting fuller by the minute lately and I am already stressed out from it, to the point where I have become lost with my routine. Doesn’t seem so long ago where we couldn’t do anything to then do anything as much as possible.

Every year, the final three months of the year are the most busiest for me. Halloween, buying birthday and Christmas presents and Christmas itself are the usual highlights. My bank balance does tend to take a dive as my mum’s and sister’s birthdays are the same week as Christmas, so lucky for them they get double presents. This year aswell as all those things to look forward to, I have three holiday trips, two weekends and one whole week away in London, I finally get to see my birthday present to watch Everyone’s Talking About Jamie on stage, aswell a couple of gatherings with some friends. Including a night away watching some good old wrestling. I’ve been having a real mixture of excitement and nervousness. I don’t know what it is, it seems the older I get, the more anxious I am. it never used to be an issue for me, if anything I would sometimes wished to do alot more stuff when I was a teenager. As any teenager would anyway. But that was limited considering I went to school outside of my home area and didn’t have any friends at home. Nowadays these things are usually a rarity for me, so when I do have a social event or some holiday coming up, I always want to have a good time as much as possible. But knowing that I have all these things planned, trying to work around my mental diary has proven to be abit of a struggle. Just this week alone, I forgot that I was going to watch a talk with Bimini Bon Boulash! Like that’s the thing I should be excited for, and I was. It’s the first time I had been to the theatre in a while so the nerves kinda crept in. I mean I rarely by train lately plus this was the first theatre related show that I had gone to since…well you know. But I actually had a great time in the end, and Bimini is so gorgeous!

I think growing up because we were all so used to routine, by the time you become an adult you don’t really learn how to make your own. Like everything was organised for me. Then there’s the pressure in how to work out how to fill in your days. If you aren’t doing much then you were considered lazy, but doing too much and you will end up in burnout. I’ve never understood how there are so many people that can manage a manic schedule, I tried it and I would be wiped for days. Life is stressful as it is, to then try and mask your way round it is really exhausting. I think this was something that the decision with those closest to me and myself realised that this was not possible for me. But there is always that worry that I’m not spending too much time to myself. I do tend to try and have a set routine, going to the gym twice/thrice a week, my weekly shop, my key worker appointments a cleaning day, knowing what times I’m eating and so on. There will be other appointments that would be added in but they’re usually in advance so I can mentally work around them in my head diary. Sometimes there will be something unplanned last minute things that also plays around. I have gotten better at being lax about that, even when it does kinda mess with my head abit. If it’s something like meeting my mum for coffee then that doesn’t bother me as I love coffee, but if it’s something like going out of town somewhere I can get panicky. When I was at college or doing my theatre volunteering and courses in Liverpool I would say were my busiest. The experience that I got during my time was insightful, it was also exhausting and could be unpredictable. It’s why I never really carried on, I realised I couldn’t really coped with it in the long run and I don’t think many have the resources to help, even if they wanted to. It kinda proves how so much improvements needs to be done in terms of adapting for those that struggle with hectic schedules, but that won’t be possible for a long time now. What I do need to do to improve in sticking with a routine a little bit more as I have been slacking as of late. I think because the Autumn has come in I tend to struggle a little bit with the change, not to mention my seasonal affectctive disorder kicking in already kicking in, goodness I’ve been hating waking up in the mornings!

Looking at my diary for the rest of year is certainly something that I am definitely glad has spruced up, I can’t help but feel anxious. As long as I plan what I need beforehand then I know that I should be ok. Why does my life revolve around planning?!

Just be you, Sarah x

Struggles with Perfection

I would once call myself a perfectionist. I think most people would identify with this. But my ideal perfection hasn’t been the way that I wanted it to be. I’m certainly ok with how I am now, but the need of wanting to be perfect made me desperate, and I almost lost myself because of it.

It’s fair the way when people get diagnosed can feel one way or the other, not that made much difference for me as I got that pretty early on in life. But because I am different, I was often treated like I was different. I know my mum did lose friends and family members felt that my mum was too soft on me. This is always the one thing I even now still feel guilty about. That it was me that caused people to distance from my mum. I know my granddad was a very harsh critic, he was very traditional like that. He died when I was nine, and I don’t think we ever had that granddaughter/grandparent bond. Could I have made more of an effort, I’ll never know. But I would like to think that if he were still around maybe we could have had a better understanding of one another. With the relatives I have that I see now and again I do think they must have felt the same too. Thankfully with some of them I think with the knowledge that there is now about the spectrum, have actually approached me in a way that was a little more human and that I’m an adult. It always seems to be when you’re a kid, teen or going into early adulthood, you’re always being tested to see what you have is legit. Even in the places that are supposed to cater for your needs, doesn’t always turn out to be so understanding. One thing that seemed to be a theme at my a school was that everything we did had to have a high force of perfection, or in their way, a sense of coming across as normal. It kind of came across as if being normal was the only way to survive. For many, this was not the reality. Even anything, trying to eliminate that could destroy a person. But I didn’t know that for the longest time.

I hate that I am admitting this, but I hated myself because I was autistic. I honestly thought that if I started to have the mindset and act like a neurotypical person, then maybe I would be just fine. There was always talk among friends about how happy we were to be autistic, but I lied about it. I don’t now because that statement that I like being autistic is true to me, but I didn’t want to say it in front of people and didn’t want to make them feel bad. Because I had this need to be perfect, everything became a competition. I wanted to be the best that I could possibly be, but I went about it the wrong way. Although I was considered popular, I didn’t set my own boundaries, or could even tell people my boundaries. Then puberty kicks in body image was playing with my mind so much, further hating myself more then I already did. Glamour modals were massive back then and I became obsessed with criticizing myself because I didn’t look like them. It’s kinda like how social media and the Instagram world has absolutely destroy kids confidence now, such an endless cycle. The pressure really kick in when I left school and left home. I had the mindset that I wanted to leave school and then live life as a big success story. But slowly, everything was going wrong. All because I didn’t really believe in myself. I let myself go, physically and mentally, and therefore once again hating myself over. I often think about much I hurt people along the way when I was so low. If I did hurt you, I am sorry. I did alienate alot of people because I didn’t ask for help because for a while it was seen as a weakness. Just recently I visited Sheffield and walked by the flat I used to live in the city. I sent a picture of it to my mum and she said she got shivers looking at it. I know I hurt my mum, because I know she gets scared when I have my low moments, she thinks I’m going back to where I was. I honestly did not know what was going to happen to me, but I had the goals to focus on in order to get back to myself. Since moving back home and trying various things, knowing that I have done all those things is a miracle.

It’s all been a process and I believe I am in a better place then I was back then. Perfection doesn’t exist. I had to really learn to like what I do have and that I am proud of. To come out of a world where people examined your imperfections too much, I can now accept that and move on. I am not a perfect person, but it’s those imperfections that makes me…me. Including my disability. I am still learning more what it means to be autistic, but it’s worth the journey of living with it has helped me so much.

Just be you, Sarah x

First Day Jitters?!

So many of you will have started the new school, college, university, job, whatever it is that you’re starting, which can be daunting as it is. Whilst it has been a while for me to have a first day of anything, it does bring a few things back for me growing up.

To go from one routine to a whole new one for the new academic year can be a difficult change. I think it was always about preparation. I know my mum would usually spend the last two weeks of the summer school holidays sorting everything out beforehand. Uniforms, new school bag, scheduling, the whole gig. I don’t really recall at any point having any kind of a meltdown like many would understandably have. Probably nerves here and there but I suppose I pretty much went to same place from the ages of six to nineteen, I got used to it. What helped was because we had to go to school by taxi, we didn’t have to have the worry of planning a route to school. Plus, the journey was always the same route so you kinda knew what to expect. Unless there was a traffic then we end up on another route which I also got used to. It wasn’t so long ago we were driving by my old route and it all comes back to me. It’s funny how I can reconisge where I’m going by remembering certain buildings, signs or dare I say even trees, yet I don’t drive. To be honest, I would be a nightmare being anxious and all. So yeah it was standard and hardly any changes. Except one year, the council decided to change my escort and add another person to the car. What was hard at the time was I had the same escort taking me to school since I was little, so to learn I was going to have someone different did upset me. The lady that we did have was really nice, probably too nice for our own good. Eventually we got our original escort back and I had her until I finished my time at that particular school. We would find out who was going to be in our class a little bit before we go on out school holidays so that also gives us time to read up the sheets that we’re given of our teacher, assistants and our classmates. Using pictures is certainly handy for those that prefer that way in introduction. Sometimes you don’t meet a new teacher until the very first day, I don’t always find that helpful because you might not like your teacher or your new assistants. My experience with teachers has been a mix so it wasn’t all bad I guess.

I remember when I moved into a ‘student’ house in Sheffield, I was so scared. I did a three day assessment a year before starting, then a two day like I’d say about two/three months before I officially started. I stayed in a house where a couple and two students already living there. I didn’t quite the idea of living with a family/couple which was a massive concern to me. It was the first time I had lived away ever. I thought I would be used to living away from home as I had my whole life going back and fourth from mum’s to dad’s houses. I did actually end up in a team house where it was ran by staff rather then a family/couple. I was so happy about this. Whilst I did feel awkward when meeting new staff anyway, but the people that I met that day were very welcoming. I don’t like to talk much when I meet new people, but as per usual mum would talk for me and will talk for me, to go as far as doing the very mum thing by embarrassing me. This does make me cringe, I’m not going to lie. Now this time you only get posted a schedule of what you’re doing during the week with only names of your tutor. That first term was a struggle as I didn’t get to meet everyone that I had met on the first two assessments. By the time I got started officially, I was able to reconisge at least some people from the get go. I mainly had sessions that I didn’t have from my assessments so it was all completely new. But the staff had so many personalities so it certainly helped me keep up in a way. There were certainly weren’t that many people that I didn’t like which says alot really.

First days for me are usually whilst the most nerve wrecking end up being ok by the end. I think I get into the really bad habits of overthinking and then by the time I get the chance to chill it all feels pointless to even worry in the first place. I think preparation is so important so always take your notes and ask as much information as possible. It’s never easy starting something new, but once you are settled, that’s when the real journey starts.

Just be you, Sarah x

How school handled world events?!

It was twenty years ago yesterday when the 9/11 attack happened. We all know where we all were that day. I would have been ten years old, came back from school only to put the telly on when the first image I saw was the second crashing into the second of the Twin Towers. Even though I probably didn’t register it straight away, it left me with a gut crawling. Even now it gives me the chills. So thinking about this made me think about all the times when the school handled world events.

The issue I have with myself about all that time ago is I don’t ever recall that conversation ever being brought up in that environment at the time. I do remember the overall feeling of people being so scared. Of course the only thing that could be done was that we carried on with our school day as much as possible. It was only a year later when there was a school assembly where a teacher showed us a slide show about that day. What I do remember from that assembly was the overall haunting sense of feeling that I think many kids felt being in that room that morning. Not many knew what we were going to listen to, we just knew what happened was the worst of humanity, but there was never an understanding or a reason why this happened. I suppose the teacher couldn’t really tell us the true whys and wherefores, mainly to avoid division with the students. But one thing was clear, these were set to be scary times. I think the only thing that probably went abit too far was when there were images shown of people falling from the buildings. It made some kids cry. I’m pretty sure the teacher pretty much ended the assembly there because it was too much for the kids. Yes it is important to have an understanding of the grim parts of events, yet you can’t predict if every person is ready to see it. It would explain why there are set rules in such an environment like my school. There’s only so much that we’re ever going to be told. I don’t believe it was ever talked about every again, I’m not quite sure if that was on purpose or not. Now that I am an adult, that’s when I try to have a full understanding of how it really was. In education you only get a basic version of such events. When I went to New York four years ago, we went to the museum. It’s only being there you can really feel and learn everything.

My memory is abit iffy when it comes to remembering these times. I do recall times when they would put the telly on in one of their lounges when students were arriving at school to catch up on the top story in the news. The Queen Mothers funeral and the fallout from Saddam Hussein’s death were the moments I remember watching. It was only myself and another person that were the only ones that watched those. Still being a child at this point, I don’t think I ever questioned alot of these moments. You can’t really because you’re supposed to enjoy your childhood while you can. I certainly like many of my fellow millennials, we had mixed childhoods. I guess the other kids weren’t really interested in those news events at my school, which is probably a good thing. Another thing that I think many would rather remember was when the gym was full when they put the World Cup on. Personally, I only watched the World Cup to try and get out of lessons, which didn’t work. One thing that I remember really took my breath away I think was the credit crunch. Just seeing all things that were disappearing in front of my eyes just made me feel sad. It was the first time I felt so heartbroken that was struggling, losing jobs and so on. I mean, Woolworths…that was a massive part of my childhood. My classmates felt the same. I think the staff felt that we were overacting but honestly, we were hurt. Now, would it made a difference if there could have been moments of time to sit down and have full on conversations when such events were happening? I don’t really know, I do feel like our intelligence was probably misunderstood sometimes and was used as a way not to have those conversations. Like I’d imagine this would have happened more in mainstream environments, yet it didn’t feel like that in a specialist environment. I couldn’t see any reason why we couldn’t, if anything it could have helped explore our own mindsets about things. Many kids did have the confidence to express views so you’d think it would make sense. But I also reconisge that’s not as simple because that’s not always the focus for everyone there. Politics certainly wasn’t a focus when I was there, not really.

Since 9/11, from my eyes it feels never-ending with what the world faces on a daily basis. One thing after another. The difference I think is access of what we now learn in right on our finger tips, certainly something I didn’t have when I was growing up. Good and bad. I believe that by having many conversations is so important no matter what age. It does feel like I lived too much in a bubble so that my own intelligence couldn’t be tested. That was something I wished my school did. I hope yours did or does and that it continues.

Just be you, Sarah x

What a burnout feels like?!

So I posted a video last week on my blog’s FB page about what I look like when I’m in burnout. I think I caused some slight panic with some people, don’t worry I am actually ok. I thought it would be a great opportunity to let people in a little bit to see some source of reality that I live. I didn’t really describe what it actually feels like, so I’d write about it.

The weirdest thing for me is I can never really recall having a burnout when I was a kid. I probably did, but I do have this tendency of forgetting my burnouts and/or meltdowns after I have them. It is a frustrating part of this disability because you think ‘what was even the point of it’ when you forget it a day or two after. Everyone’s burnouts can be or feel different, so the way I have them it might not be similar to yours, so it is kind of hard to compare. I suppose you have that much more energy when you’re a child so that could be another reason why I didn’t notice it as much. I’d cry and maybe on the odd occasional screaming match. I’d probably have had the really rare fighting match with anyone that may be on site at the time, to which I apologize if I ever hurt you in that way. I often talk about the guilt I feel for those time when I did have meltdowns as I kid, my mum will always say ‘you were a kid, you didn’t know how to do it back then’. I think now that I am an adult and have strategies for when a potential what I like to call ‘moments’ come to play. It’s the same when I’m on a burnout. Having an eye on my diary helps because I can somewhat have plan for when and if they come to play. For instance, we came from a few days in London on the Tuesday and I had spent the rest of the week just recharging. With the odd job here and there, mainly catching up with housework, but most of the time was spent in my massive duvet feeling wiped. It’s weird because we didn’t really do that much during our time there. We went out one day to watch some stand-up which was a rather nice afternoon to do so. But there is still much unpredictability to work around with. Using the Overground I always find to be a stressful situation, but as long as I have people with me it’s a tiny bit better. The rest of the time we were there was me binging on Catfish.

Have you ever seen the TV drama Humans? For me, it’s abit like that. Every night the bots have to recharge before they have to get up and work the next morning to serve their humans. The only difference between myself and the show is that this could take me up to two or three days to fully recover. I can put all my energy in what I may be doing, and then it just be wiped by the evening. Socializing is often hard for me now, even though I like seeing people, I find myself tired then usual. I do get myself down about it sometimes as I do wish I could have more energy. In the society we have, it’s classed as lazy for not doing much with your life. But there is never an understanding that the reality for some it’s not as simple as doing the things that society tells us to do. Because I have burnouts, I am considered useless for any working environments. Having said that, there are more people these days that are feeling the burnouts from working in toxic environments and would rather quit their jobs. That to me totally makes to me. There’s so much pressure, especially now, they tell you to be at your best throughout your shifts, and show no sign of weakness. At my last voluntary job in 2019, the one thing I was always told was that I looked miserable. I have resting bitch face, and whilst that isn’t a good look, I can’t simple put on a more ‘positive’ looking face. It takes me back all the time when I had to do choir at school and being constantly being told to smile…I hate that. Believe or not, even smiling is a tiring task. It made me realise that I’m not cut out for long hours. Can’t imagine how working for long hours must feel for anybody. I feel frustrated with myself because it only seems noticeable now that I am an adult. Having said that, it’s actually helped me learn what my boundaries are. For a disability that is often teaches about boundaries, it’s not encouraged in the sense of within ourselves. Whether people can recognize it or not.

Whenever you have a burnout, be kind to yourself. Run a bath, put a face mask on, treat yourself to your favourite sweets and have good old binge on Netflix. Anything that helps you to ease. It can make you feel numb sometimes and sometimes the odd negative thought might come in. But this is how your mind and body works, and we need to take good care.

Just be you, Sarah x

Why I love/hate Love Island?!

With the latest season drawing to a close, it only seems fair that I express some things where as much I am a fan of the show, there are issues that goes along with it.

I have watched the show from the very beginning back in 2005, when it was celebs that participated. But you can’t deny when they rebooted it, it was far superior then the original showing. I think why I became fascinated by it is how they interact with each other, especially when in the dating world. I have had boyfriends, but I have no experience on going on first dates and having those experiences before making it official with someone. Probably the biggest mistake of my life if I was real with myself, but you live and learn. I’m certainly not in the mental and financial position to put myself out there. I know that doesn’t always matter to everyone, but it is something that is often the major attributes that a person should have before making commitments. The premise of the show is to last as long as possible in the villa, coupled up with someone and finding out to see if you are compatible with that person. You have to work together, get to know one another and even share the same bed as them. Sounds like a nightmare for me personally. But for many, it’s not so dissimilar to going on your group holidays. Bloody hell, this country is obsessed with holidays! It has become a massive success, yet it does have it’s problems. Controversial for it’s negative impact on mental health, treatment during and after the show by production team, diet culture, and beauty standards certainly have a massive role in this. It’s a massive risk to enter a show like that without people trolling or making comments based on what we only get to see. We don’t see everything that happens, but what we do, everyone’s got an opinion on it. Of course there are going to be moments and certain actions on the show that I felt would be out of line, and there was plenty on that this season, but I also reconigse that it’s also edited in a way that could make it look worse then it might be. The show is known for it’s drama, just like every other reality TV show. It’s only now that shows like these where I’d like to think where treatment of their contestants are taken better care of by their production.

I much prefer watching the group dynamics more then the dating aspects. Friendship is very vital on the show, I mean you’re living with these people for weeks on end so you do need your friends. How they prep one another up and celebrate their accomplishments. Yes it’s nice to see true love blossom in there, but that’s actually rare. This year’s series was quite an interesting one. It really exposes the typical downsides from male and female perspectives in terms how they treat one another, mainly in what not to do. It has to be pointed that people will make mistakes and it is important to reconigse not to make full judgments, considering how we only an hour’s worth out of twenty-four each night. I do usually find that is go on for far too long, there was one week where I did get bored and didn’t watch for like four episodes at least. In the previous season they did six weeks instead of it’s usual eight, and I think much prefer that. For the first few weeks I didn’t like anyone that entered. However, I do now have a soft spot for Toby. He grew up fast, only twenty two, new to the dating world and never had a serious relationship. Yeah he had a raw deal in the beginning by doing stupid things, but I totally think he learned his lesson, plus him and Chloe do make me laugh. I also have massive respect for Liberty recently with the fall out between Liberty and Jake. When she came in she was typecast as the ‘dumb blonde’ character that usually get on the show. She and Jake were also typecast to be the one couple that usually lasts throughout the show’s run. This however did not happen for these two as she broke the relationship off and they left the villa as singletons days before the final. I can’t speak for all women, but one thing I have a common element off her is how we think about the little things. It becomes one thing after another, bubbling up until it gets too much. Little gestures are just as vital as the big gestures no matter how big or small. To see her reconigse her worth was whilst emotional, it was such a great watch. I do believe Jake wasn’t the right person for her. He is not a bad person, but he did things that didn’t look great and his side of the relationship wasn’t convincing enough. I personally didn’t like his part when some of the boys questioned if they should crack on with the women they met at Casa Amour. Yes, the men in question did stray, but they only did that after he encouraged it. It certainly doesn’t give the idea of ‘lads holiday’ a good look.

I don’t always recommend it because there are many things about the show that are really stupid, but it is a perfect insight how the modern world of dating looks like. I got my mum into it and now she looks forward to it more then I do. With the issues they do have, they have alot more work to do. I do wish that they carry on improving for their sake just much as anyone that enters the show. Also, if they could improve on inclusion that would be super.

Just be you, Sarah x

Review of Hidden Disabilities: What’s The Truth

ITV News this week presented a half hour special about the complicated world of hidden disabilities. I decided that I’d watch it myself to not only have an understanding of those with other hidden disabilities, but also see if the views matched with mine.

I usually worry when news specials, documentaries or TV shows that go into the subject of hidden disabilities. Like I can’t bring myself to watch Atypical and I couldn’t finish The A Word because I just get angry watching it. The main reason I think is simply because you often find those making these programmes have no clue what it’s actually like to be someone that has a disability. It somewhat takes away the humanity of it all and only paints what the majority knows is the perceived versions of many disabilities, especially Autism. I’ve recently had a couple of conversations with some people when being asked about my situation. In my case, whilst having supported living is what I need, it also restricts me from doing anything outside of that isn’t voluntary. So to put myself in a paid working job means that I would potentially lose my home and my care. There are people who just don’t understand that it’s not as simple to being able to have all the things you need and being able to live a fulfilled life. You are made to make choices based around what care you need and what you can actually afford. It’s bad enough that you have to explain yourself on a occasional basis to the DWP appointment that have no idea what’s like to be in the positions that many are in. But for me, it feels worse when it’s people that you know that seems to be the harsher critic. I get their concerns, but they’re not me. I too am frustrated that I’ve had to live a life where I am constantly questioned for every move I make. However, I am happy with where I’m at. Anyway, I’m kinda going off topic. So to hear these stories in this special was going to be hard and heartbreaking to watch. However whilst so much more needs to be expanded, it validates our point. Especially as we’re now coming into the new norm, there is the question who’s going to get left behind.

The programme introduces us to a young man with autism and has an interest of cars and racing struggling to find somewhere to find a daily opportunity where those interests could come in handy. It actually reminded me of someone that I know that actually has similar interests and has gone through that journey of finding a job. My friend has finally gotten themselves in a job that they like which in our world is a miracle. Anyway, in this special, it really showed limited the working world for those that have very specific interests. Thankfully the lad their interviewed has a job which of course is great news for him. The amount of stigma and ignorance just infuriates me so much, it does sometimes make you lose trust with the world. The programme then interviews a young lady who has spina bifida, tells her experiences where people have gone up to her and questioned when using a disabled toilets and seating. Why do people have to police other everyone when actually it’s none of their business. There is this big misconception of what the word ‘disabled’ means. It’s assumed that those that are disabled are just those that have physical conditions that requires them wheelchairs or mobility scooters constantly. Whilst there are that do, it’s definitely not as simple as that. The programme then goes down the root of the effect that losing vital benefits have without warning, to the point that it ended someone’s life. I feel so devastated for the family for the lady who sister told her story when her benefits were cut and felt she had no other option. I realize that there are people that have taken advantage of this and it’s meant that people that genuinely miss out and it’s those that have taken advantage that do need to be investigated. Yet I do find that people are getting cut off without looking at the full context of their own situation. There certainly needs to be a better way to assess people without the feeling of being judged. I was certainly disappointed by the DWP’s statement in regards to that particular situation, as I believe there are many stories like this. It did end on a lovely story of a woman who has a support dog that can sense and give warnings when she is going to have a seizure. It’s so clever how dogs can pick up these things up the way they do. Dogs have shown that they are useful for those that also have anxiety, which I am rather jealous of because I want one. I met my dad’s new dog this week, and it’s my favourite breed, a bulldog. I wanted to steal her! Jokes aside, dogs are amazing.

So whilst I felt so much more that needed to be said, it was very much straight to the point. If you have a spare half hour, I would say it’s worth a watch. I know there is so much more that needs to be done now that we’re on the slow road. As frustrating it was to watch, it was also important.

Just be you, Sarah x

Why I didn’t go to university?!

Now that everyone is on their school holidays, for many in the back of their minds, they will be thinking their next step in their lives, which would be university. This can be a very exciting time. However, even with that, it didn’t encourage me to do the same thing.

Sheffield was the first time I had properly been away from home and like so many. I didn’t really know what to think. It was something I wanted, all my other choices didn’t exactly offer the freedom that I really needed. Most post-19 specialist education are in the middle of nowhere and it doesn’t encourage experiencing ‘the outside world’. Kind of like what you would expect if you went into a campus setup. In some ways, I get that the safety of students has to be in place. But when you see these places like I have, there wasn’t alot to do on these campuses. One place I visited before choosing Sheffield, all the had was a library, an arts room and one cafe. As I say, not alot of choices. In the end, Sheffield was my best option. It’s the only place I felt where you felt like a student. Their main building was right bang in the city centre, so if you wanted a Greggs like I did, you can go and get one. Obviously it’s difficult to do that when you go off site. I’m not going to deny the bullshit that you get sometimes when I was there, because there was alot of that. Pretty much like specialist education as a whole. Yet, the confidence that I did gain from there made me believe that I could stay here long term. So going to B-tech was a good opportunity to do that, but no one tells you how rough this was going to potentially be. I often wonder if I have let down any of my tutors at the time in both specialist and mainstream colleges. I think there was high expectations for me and it does somehow seem disappointing that I have gone back home and have not being able to get into the performing arts world that I thought I wanted. It all proved too much for me. I was working so hard at the best that I possibly could, but it left me trying to benefit for others rather then myself. I didn’t have time for myself and you could tell. I was losing my hair and my skin was peeling. I was unhappy, and I made the decision to go back home once I’ve finished my final year at mainstream.

After everything that I had gone through, as much as I done it with flying colours, it was at the cost of my mental health. As much as I was in pain, without having those experiences, I wouldn’t have known what my limit was. I think that’s always the natural nightmare to have when something doesn’t go how you planned. I know that was definitely my biggest fear in life, that and being an absolute failure. I pretty much understand the pressure that kids nowadays, especially when universities are desperate to have students, but they don’t offer alot when it comes to mental health issues. When I was nearing finishing B-tech, my tutor pulled me aside and I was offered to go what was the equivalent of a degree. I immediately said no. I think she was shocked at first, but I explained why I didn’t want to carry on, I think she appreciated and respected my decision. I finished my year and went back home that summer to start the next step. I had friends that were going to university and hearing about their experiences. Long story short, the majority say they found they hated or found their experiences hard. Some carried on even by their own frustrations, some didn’t. Learning all these stories, this is why I am so happy that I didn’t go. Sure, there’s nothing that could stop me, but I don’t have the interest for it. I did manage to gain more experience by doing volunteer jobs and apprenticeships in Liverpool for a good few years and have good memories of it. I am limited in terms what I can actually do now that I am in supporting living and that I am no longer in my twenties. But I learnt so much within the theatre industry, even if it didn’t last long. The money that gets put into degrees seems really extreme to me. I have no doubt that there are reasons as to why that is, but I knew that I couldn’t bear to go to a university knowing that there’s money to pay off, whether or not I would finish a course or not. Weighing everything in mind, I am content with my life as it’s gone on. I hate to use this word, but it’s been a unique one.

University isn’t for everyone. It’s not the end of the world if it’s not in your plans to go, nor is it when you don’t the credentials that you need to get there. In a way, I’d say I had used my time at Sheffield as a version of university. I did five years and I had learnt so much from gaining life experiences from specialist and mainstream environments. There are things that I wished I would have liked to have been different, I don’t have any regrets either.

Just be you, Sarah x

Why I like swimming & water activities?!

There’s always that one form of exercise or activity that some of us like to do, for me it’s almost anything to do with water. I love water so much it’s what I drink most of the time. I mean, I need to survive of course.

My mum always likes to embarrass me by telling the story of when I was a toddler, I was escaped from my buggie, took my clothes off and would run towards the sea. My sister had to chase me to catch up to me, it was almost like the sea was calling me! I wish I could go back to that moment in time and tell myself ‘whatever you’re doing, don’t’. Be that as may, I do quite like the significance of that story. From a sensory point of view, there’s something so pleasing about water. How it sounds, the way it can look sometimes and how it actually feels. I love swimming, not only because it’s a form of exercise I enjoy but how it rides with me as I’m swimming. Although sometimes my skin breaks out with eczema because of the chlorine, I would rather swim then do weight training or cross fit or whatever the trendy exercise is. The best childhood memories that I have was when school would take us to our swimming sessions at a local sports centre. Sensory wise it’s either best day or the worst day for an Autistic kid. Like for some, the day is ruined even if they’re forced to step into the water. It’s hard because it’s so vital for us to learn how to swim, but you only get so much time to properly learn. There’s the question of what kind of waters you could be in. It’s one thing to be in a public pool then it is to be in the sea. For me, I absolutely loved when swimming lessons were coming up. The simple tasks from going from one side to the other in different ways was the best task to have. At one point because I had progressed better then most I had my own lane. I would have been given simple instructions at longer lengths. Aquaman eat your heart out! One time they wanted to test how long we could actually swim for, I got up to half a mile which I don’t I could ever do again. Some of my other best memories was when I did the swimming galas against other local schools. It was a day out, and certainly a good opportunity to represent our school. It’s such a shame when puberty hit I lost confidence because I love swimming so much. I think deep down, maybe other people were as it was one of my biggest strengths. I still have my medals from those days that I still don’t know what to do with.

There’s just something about swimming or doing a water activity that makes you feel at peace. I am with my own thoughts as I’m going up and down or riding through. Although when paddle boarding as I have recently learnt, don’t get into your thoughts too much or you will fall in…a number of times. I could be thinking about anything, completely zoned. Even with a resting bitch face which my sister pointed out once when I’m swimming. I guess that’s really I like doing these things so much. You can’t really do it at home because there are so many distractions. If I had all the money in the world I would have my own pool. But I will have to make do with my gym membership. I do find it hard sometimes that I don’t have a circle that is interested in these particular activities as me. I’m not really good at introducing myself into new groups that are and I don’t like to push it on my own circle because that’s not me. My dad has included me with his new hobby in paddle boarding which is nice, although I’m not very good at it. I do prefer kayaking, as I discovered when I tackled the river at Matlock which was alot of fun. I really need to work on finding the confidence is exploring this more. Whenever I go on holiday somewhere, my mum researches activities that I could participate in as I do feel like it’s part of my relaxation. The few times that I have done such times I have enjoyed so much. There are a few activities that I personally wouldn’t do however. Swimming in the sea, as I gotten older I don’t like the feeling of swimming in salty water. It’s also not good for my skin either and I can easily scratch like mad. As much as I like kayaking in mini rapids, I don’t think I could take on the massive ones where you’re sharing a huge dingy with other people and crashing through the waters. I get sick just thinking about it, and I have to take anti-sickness tablets just to do standard kayaking. I almost hurled once when I did some in St. Ives, forgot to take the tablets, it started raining and I was going to be sick towards the end but managed to get to shore on time and walked it off.

Besides those things, I much rather enjoy such activities and will do more in the future. Goodness knows how I’m going to be when I’m going paddle boarding with my dad in two weeks, I probably need to stop drifting off in order to get the hang on it. I would love to do something in Snowdonia at some point as it seems to be rather famous for all such adventurous activities, yeah I’m no Bear Grylls but I can handle some sense of fun.

Just be you, Sarah x