"You're Just Dozy"

How many times have my genuine problems been laughed off as "just..." something? Dozy. Daft. Clumsy. Forgetful. Being stupid. Not paying attention. Or worse, when those speaking become irate or frustrated; Attention seeking. Naughty. Horrible. Retard. Don't deserve my children. Psychotic. Liar. Manipulator. Annoying. The list is endless, really. 

These words stay in my head and replay every time self hatred rears it's ugly head, reminds me I'm at fault, if I could just stop being whatever the word of the day is, perhaps I'll stop pissing people off, breaking things, banging into walls and tripping over nothing. No matter how much my rational mind tells me I'm not responsible for these things therefore I'm not to be blamed, my emotional mind is torn apart by these insinuations.

I'm not sure if the person means well - sometimes it seems as though they're trying to make light of my issues so as not to draw attention to the "A" word, sometimes it just seems senseless and cruel.

Over and over, my head berates me in words and phrases slung at me in times passed - "you're being f**king pathetic" "selfish child" "other people have it worse, why can't you just be grateful, why can't you be normal?!"

The last words a certain ex partner said to me after telling me to never contact him again were "if he asks why he doesn't see his Dad, tell him it's because his mother is a psychotic b**ch who can't just be normal!"

Well, I think we all know why I can't "be normal". I can act it for short periods but that leads to such a dip in energy that the repercussions are hardly worth it. I've had years of people taking their frustration (admittedly, caused by my behaviour, silence or inability to communicate at the time) out on me. Do they think because I'm autistic that I don't take those in? Remember every word, I remember every word. In fact, I'd say my memory (long term, not working/short term) is better than average, so I'm MORE likely to remember and ingest those poisonous words.

Even when light hearted, apparently meant to make me feel "better", the words just serve as ammunition in my already overloaded arsenal of self abuse. Please, before you take your frustrations out in verbal form, take a moment to remember my pain and think before you speak. I may look completely unfazed, even blank. Inside I'm breaking and every new word, every "why can't you just..." "stop being..." and "I can't take this, you..." becomes a tool in which to destroy what little self esteem and emotional balance I have left. I know I'm not alone, and I, at least, have a voice to speak out. Other's don't, and are trapped in their own personal hell with no way to stop the verbal onslaught. Even if you don't think they hear or understand you, there's a damn good chance they might - please don't take that risk. It might seem better than taking frustrations out other ways, but can be just as harmful if not more.

Please, if you have any experience with this topic, whether it be on a professional or personal basis, feel free to share your thoughts, stories or links in the comments below. Thanks for reading, Pix and co x

Sports Day, Stimming and Sensory Overload

As you may have already guessed from the title, I attended the Soulful One's Sports Day on Friday - definitely a step in the right direction after my non-attendance last year. Please, don't get me wrong; I'd love nothing more than to be cheering alongside every other parent for all his events, but some things are, or seem, insurmountable some days - and sometimes the little victories are the ones that mean the most. 

So, after a hectic morning spent bouncing around the house like a loose firework, the Space Cowboy and I dropped off the small ones at their respective classes and joined the other parents on the school field.

At first, I began to panic as I thought I may not recognise him among the hundreds of children on the field and that we'd miss his first race, but, as usual, SC came to the rescue and spotted him almost straight away - with the Soulful One spotting us a few moments later, breaking away from his team and running over to give me a hug. I'm so, so glad I didn't miss this. 

The first race was a difficult one for him - it involved skipping (rope) back and forth from point A to B, then (making things even more difficult) he was to pass the rope to the child behind him, then take it again when their run was over. Both his gross motor skills and fine motor skills are fairly weak, so he struggled along for most of his turns - almost getting it on his last run. The important thing here is: He kept trying, despite the child he was swapping rope with telling him repeatedly to "just run instead", he tried his bloody hardest and I'm not ashamed to say I was the most vocal parent there in that moment :) I'm so incredibly proud of him!

He continued to try his very best in the next race, and the next, but by that point he was tiring out fast and started to lose concentration, wandering outside the team and spinning in circles, aimlessly walking and, once it was time to change activity again, the chewing started up too. I can't say I blamed him - the noise, bright sun light, oodles of people both miniature and full size stood in groups everywhere you looked and constant change of activity was wearing on me too, and watching my little guy start to lose himself kicked off emotional reactions too. 

By the next race, he was struggling to follow direction and had started chewing and fidgeting near his mouth - something he does when he's tired or stressed. After a bit of confusion, he got back in line for the next activity and took a shot throwing a bean at hoops a foot or so ahead of him - he missed on his first go, but on his second managed to get it in and bagged his team two points! He was so made up, he came for another hug!

Quick photo-op with two of my favourite boys.


Unfortunately we had to leave during his next race as his younger brother had speech therapy half way through the activities (I believe they call that "sod's law") and even more unfortunately, his concentration and behaviour disintegrated even further after we left, leading to refusals, panic and meltdowns. Other parents may have watched him, some sadly with understanding, some in shock and some, quite likely, muttering how "they'd straighten him out" and other such things. Some may have looked away. Those reactions aren't really important, but they're a regular occurrence when out in public with the Soulful One, so they're notable nonetheless. They're not important because I know without a doubt (and he does too) that he tried his best in both the activities themselves and in keeping himself composed for so long in such a new, stressful environment. He's my little champion. 

By the time I picked him up at hometime, he'd settled down into a calmer mood, was fairly bright and happy if a little worn out. We tried to keep the rest of the afternoon and evening as calm as possible - quite a difficult feat with five children aged 6 and under bouncing around the living room for three and a half hours. He had fun playing with the boys but by 6 o'clock he was covering his ears to block out the noise of the Space Cowboy's game.

I took him to one side and asked if he'd like to go into the spare room for some alone time with the tablet and he nodded quietly; so, after getting changed into his favourite PJs,  that's how he spent the rest of his Friday evening:

For about 3 hours, until we finally went in to ask him to get into bed for a night-time movie night with the Feral One (they recently began sharing their bedroom again after almost a year apart - needless to say they're overjoyed :)), he sat crouched in the same position playing his Moshi Monsters game in silence. It may seem odd to some, but this really is the best way we've found to help him de-stress after a taxing day. He needs solitude and the activities on his tablet keep his mind and hands occupied while he's so tense, which helps reduce the amount of anxious lip chewing/sleeve chewing that tend to occur when he sits and worries with nothing else to think about except the things that've gone wrong that day, or what could go wrong tomorrow. It helps him zone out of the world that causes him so much aggravation and sensory hell. Bottom line - it helps.

Here he is with his little brother before bed, mildly irritated with me because I'm insisting on taking a picture while he's trying to watch King of the Railway:

Change and the inevitable.

If there's one thing most people know about autism, it's that it and change do not mesh well. One thing people may not realise, however, is that even positive changes can throw our lives and minds into turbulence, often leading to strange or unwanted behaviours; big changes in an individual's life may even lead to depression. 

As an adult looking back throughout my childhood and adolescent years, it's easy to see the triggers behind certain periods of erratic behaviours - divorce/my father leaving lead to a disastrous change in behaviour back in early childhood (I believe I was 5 at the time), every time I changed teachers or classes, or a new person entered my life. When I changed schools at 13, I developed a phobia of the new school and my attendance went from 95%+ to 0% over the course of 3 months. I haven't been able to handle any education setting for more than a few months since - even then, it's hit and miss over whether I can overcome the anxiety that plagues me when I think about entering a classroom. 

When my therapist passed away, I fell into a pattern of substance abuse and extremely negative behaviour - I lost all sense of myself for months, until a friend pulled me out of it, and I slowly adjusted to life without my old friend.

When my partner moved in, I became a nervous wreck - in part because my "safe place" was no longer mine, but in part because of the sheer shock of how much change had to take place to take the next step in our relationship. 

And this week, because we've adopted two beautiful baby bearded dragons and have their vivarium set up in our room, I'm back in "that place" again. My brain is scattered and I'm regularly forgetting daily tasks I'd previously "nailed". I'm losing words, more anxious than usual and seem to be ready to snap at all times. I even feel physically worse - the pain in my joints seem even more acute, my body's aching like I spent the entirety of yesterday in the gym and my sensory "issues" are even more prominent - ears buzzing, headaches from simple daylight, completely intolerant to light touch and the feel of most fabrics setting my teeth on edge. 

I'm desperately trying to keep a hold on myself and just. stay. calm. 

But it's not quite that simple when your whole being has been affected. I'm sure many of you will relate to the fear of change - it's not an unusual trait in people. Even if you don't quite experience the full range of reaction's I've mentioned (though I'm certain quite a few of you will), it's easy to understand the new and often bizarre behaviour that can crop up when a change is made or just happens in a person's life when it's explained by those who experience it. I'd like to invite anyone who does to share their thoughts too; sharing your experiences may help others in the same situation, at the very least it brings solidarity and comfort to others who'd otherwise feel alone.

Hopefully I'll adjust to life with our new friends soon - I'm otherwise extremely positive about their arrival, very excited to be caring for them and literally bouncing with the want to hold them, feed them and watch them 24/7. I think the children may be feeling a tad shut out, as they're also acting out more than usual. Or maybe I'm just more sensitive to it. Who knows? Perhaps our new additions to the family have inadvertently caused a reaction in them too. Despite the upheaval their arrival's caused, you can't deny they're definitely sweet enough to be worth it. 

I think I'm breaking.

Tonight, I was a shitty parent. I was distracted and snapped at the boys more than once. To be fair, they were being naughty. Not terrible, just generally being little monsters. I was right to tell them off, but my voice just went from normal to extremely angry in seconds, and I caused them to be upset and fearful (although the authenticity of these feelings is unknown - both have a habit of using facial expressions/noises to manipulate situations to suit them, which we're trying to address - and failing it seems).

I believe this was the exact plan they came up with, bar the Americanised "Mom". It's Mum here, people :)



By the time evening rolled around, I was basically a walking ball of stress, waiting to explode. Before bedtime, the Soulful One made one small infraction (left the tap running, again) and sternly told him to go to his room and get into bed, there'd be no reading tonight (meaning no star on his homework diary) as he'd made me feel very angry and upset tonight. 

Within moments, his face crumpled and he ran into his room. As I got the Feral One changed and ready for bed, I heard him sobbing and saying things, but couldn't make them out. Once I'd FO in with his Thomas books and Kittycat, I made my way in to see my other son, who was still crying hysterically in his room. I began to make out what he was saying; "I don't deserve my things, I'm going to leave this family".

When I tried to console him, he told me to take his Lego figures because he doesn't deserve them (his current favourite things). I don't know why, but something inside me just broke, and I picked them up and told him I wouldn't be trying any more unless he started trying too - and if he told me he wanted me to do something despite not really wanting it to happen again, I'd do what he asked regardless. Of course, this made him worse and being a coward, I left. I couldn't watch him cry any more. It makes me sick to listen to it through the wall, to witness it again tonight when I'm in this strange mindset is not a good idea, so I've kept myself out of the situation. My partner's dealing with him, and I'm sat here, feeling like a failure yet again.

I still have those Lego figures on my desk. 

The price we pay.

Before I begin, I'd like to say that, for the most part, I'm happy with who I am; happy with my life, my family and friends - I do truly appreciate how lucky I am to be where I'm at now. My partner is incredible - his inner strength has always amazed me - and I'd be absolutely lost without him. Life can be beautiful.

This past week, though, has been tough. Tough is actually an understatement - it's been one of the hardest weeks I've experienced in a very long time. Expectations have been raised to almost insurmountable levels, and our home has seen a lot of negativity over the last 10 days - and not all of it came from me. 

Around this time last week, I was reaching the later stages of a suicide plan. My partner surprised me by turning up an hour earlier than expected - in fact, at that point, I wasn't entirely sure he'd be returning at all, bar to collect his things. My rock, the cog that keeps this family running, very nearly crumbled. Discovering my intent pushed him over the edge, and I (we) came seriously close to losing him completely. I absolutely regret acting on my suicidal thoughts.

I hadn't yet taken anything above my prescribed dose when I was discovered, but had spent a good three hours getting everything in order before I took the final steps. I'd collected my presciption for Tramadol after I'd said goodbye to my beautiful boys - by far the most painful admission in this post. They had absolutely no clue anything was wrong, they were picked up by a friend to spend time with her children; nothing was out of the ordinary except my inability to stop crying. I got my youngest dressed with the utmost care and consciousness, taking in every single detail of them both before they walked out of my garden gate. I'd prepared messages for my parents and my partner, and was trying to work out whether I should take the pills and walk somewhere to avoid getting caught, whether I should do it at all, when my partner pulled up outside. I'm thankful he did, although at the time it felt like my insides had fallen out; not only would he likely discover the evidence and be upset, but my chance to escape the hell I was in had just slipped away. 

My partner was, in a word, devastated. Angry... so very, very angry too. He couldn't even bare to look at me or touch me, his hate filled words inflicting pain I can't possibly describe. Of course, I deserved them. What he said was true; I'm a pathetic, selfish individual. What I tried to do highlights that. The people I would have left behind would be affected, in ways I probably don't understand. His anger spilled over, and all of the tension of living with me came screaming out; admitting he simply gets annoyed when I get upset these days - no matter whether I can control the situation/reaction or not. This is not something I can simply fix, the answers aren't simple. 

I'm not sure how, or why, but despite stating his intent to leave over and over, he stayed. The anger seems to have stayed too - to be honest, it's been lurking for a long time. After several frank, brutally honest conversations with him, I've discovered he's struggling immensely to deal with me. His feelings of love, although currently still there, are allegedly under threat by the stress of dealing with my more "difficult" behaviours - even the small annoyances, like my tendency to interrupt/talk over him, or dealing with anxieties when out shopping, are starting to get to him. I despise myself for this - a perfectly nice person who's become angry and resentful just living in the same house as me. The person I met would never have ripped my earplugs out and screamed in my face (note, this was 4 hours prior to the suicide confrontation - my own fault for trying to go walking at the wrong time, I was in a complete brain fog at that point and didn't check the time). He's a good person, the best - but living with me has taken it's toll on him. 

All this is not to say that I don't try - oh my, if you could know how much effort I put into being "better". Better at staying calm, at juggling tasks, at being a person. Just making a phone call leaves my mind exhausted - having to put on a façade in real life is even harder. I'm almost constantly on edge - learning about autism, although eye-opening and incredibly helpful in learning more about myself, has brought about a certain self awareness that is, at times, unbearable. Knowing I have an issue with, say, conversation, means I can work on developing those skills specifically - but it also leaves me with a kind of paranoia, which again, is both a help and a hindrance. This paranoia, or self awareness, leads me to put my full focus on the problem area - either leading to success as a result of good planning/attitude, or failure as a result of anxiety over the thought of failing, generally not being good at whatever it is to begin with, or losing concentration. This, in turn, often results in me beating myself up - both figuratively and literally. It's a vicious cycle I'm struggling to break. 

Putting the suicide plans aside, the past week has been a mass of tears, meltdowns, shutdowns and deep loneliness. More than ten severe upsets and what felt like a hundred smaller ones have left me, and the people around me, exhausted. In fact, the turbulence of that period was most likely the cause of my complete loss of hope to begin with, the catalyst to my choice to opt out. I'm not entirely sure what's caused the recent increase in emotional outbursts - I know the barbed comments from the Space Cowboy in the past few weeks haven't helped, but surely there's a cause beyond that? The only big changes have been the boy's return to school, the Soulful One joining Beavers and myself attempting to be at least 10% more social than usual. I've coped with such changes better than this in the past, though, being fair, usually one at a time. 

I'm also no longer allowed to bring up suicide in discussions, which is difficult as I tend to feel the urge to split my head open every time I have a meltdown, and is difficult to get used to. When I mutter or cry the words "I want to die, I need to die" during upsets, I'm not saying that to anyone in particular. I just feel the intense urge to remove the words from my head and blurt them out into the real world. I suppose it could also be seen as a plea for help - at that point, something needs to change in the environment - usually it's for whatever it is that's distressing to either stop, or be removed. Whether that's a person who wont stop talking, or a fire alarm going off, all my mind wants is a big red button that just ends it all. I don't think in terms or permeability at this point - my mind is stuck on automatic speech and response. I'll often shift into catatonic states, making very little sense of incoming information from the world around me; most of what is said to me in these periods is completely deflected and simply impossible to process. Some words/phrases sink in, though it's hit and miss. I often lose speech, or am reduced to just repeating the same phrases/words until things just. stop. being. so. awful. 

Then, in anything from 5 minutes to 12 hours or more, I'm okay again. I'm still me - flawed, goofy and ridiculously easy to amuse/please, but without that ache in my chest, the pressure in my brain that makes me think nothing will ever be okay again, the itching all over my body that feels like tiny worms snaking their way under my skin, making me twitch, shake and flail, the intense feelings that flood me and then let go, leaving me shaken, exhausted and, depending on who saw what, deeply ashamed. 

As of right now, things between the Space Cowboy and I have settled, slightly. It's taken two days of relative calmness (only one moderate upset per day) to be able to come on here and write this down. As always, I believe I may have gone off on a slight tangent - my apologies.

I will, as ever, continue to try my best to make the people I love happy - whether it's by trying to avoid speaking of my suicidal thoughts, making their favourite food or even keeping the mask on, out there and at home, for them - no matter how much you wish you could just rip it off for good. 

As the saying goes...

... and after a weekend of what felt like a constant battle with the Soulful one - one that included launched DVD cases and some well placed digs from him and a counter defence of removing everything - bed included - from his room for half of Saturday, I had some pretty dire visions for his first day back in school on Monday. But he surprised everyone and managed to keep mostly calm and compliant, both in his nurture group, the mainstream class AND at home. Aside from the state of his lips, which he'd managed to stop chewing over the Easter holidays and which had healed wonderfully and are now a raw, sore mess again, there was very little evidence of the stress he'd experienced. As a reward for him behaving so beautifully, I spoke to our local scout group and arranged to have him come in for a trial session with the Beavers - which happened to be that night!

I was a little wary of taking him somewhere completely new (not to mention noisy!) when he'd already had a taxing day, but he seemed well in himself and was excited to hear he was going out - not sure he understood exactly what it was we were going out to do, but made up none the less :) he was in high spirits walking down to the Ecumenical Centre with his little brother, though asked to put my ear defenders on before we entered - we could hear the chaos from outside! I'd have much preferred to have left the Feral One back at the house, but unfortunately the group's times clash with my partner's time with his boys, and so all three of us walked into the truly deafening hall; me prepared for the worst and having a mild anxiety attack, the Soulful one munching on his lip wearing adult sized ear defenders and the Feral One with his hands clamped over his ears literally bouncing into the place. 

As usual the Soulful One stayed clamped to my side, holding my hand, while the Feral One threatened to detach himself completely and run head first into the circle of children in the middle of the room. We hovered near the table of adults and words were exchanged, though I could barely hear what they responded with, I gave his name and after a few minutes one of the leaders came around the table and lead SO (and by proxy, FO and myself) toward the circle of cubs and beavers (for some reason, that week they'd mixed the groups, though apparently the Beavers are usually in a quieter, smaller room upstairs) and stood him between the leaders and a boy of a similar age/height, as I extracted my hand and sat down on one of the chairs skirting the room - trying to wrangle the Feral One onto the one adjacent to mine, failing, running after him and then successfully sitting him on my knee/clamping him down in a bear hug. 

The leaders opened with the sad news the father to two of their beavers had passed away, and lead a moment of prayer for them - though I'm not entirely sure SO understood as I didn't see him bow his head along with the rest of the troop; I know FO certainly didn't, he was far too busy trying to see how well the hall echoed. They moved on, raising the flag, saying their promise and then breaking up to set up a game. The Soulful One seemed to be completely dazed by everything - he wandered over to me and stood by watching everything, giving mindless, nonsensical answers to one of the leaders who came over to say hello - quite amusing to behold. 

The next hour was a blur - mainly thanks to the Feral One, who kept me on my toes, and catching up with one of the leaders (who happens to be my old scout leader - apparently my son's his first second generation scout, which is pretty awesome). During this hour he managed to stand/sit with the other children, at one point he joined in the game they played and I noticed him chatting with the boy he was sat next to a few times - it was lovely to see. It was only during the last ten minutes that he shut down, and even then it only took ten minutes outside in the quiet to get him talking/responding again. He had a nice chat with my old leader about the things he'd be doing with them in the future if he decided to join them, even going through pictures of past events on his phone. We said our goodbyes and hurried home - it was almost bedtime by the time we got back, so no time for deep conversation or talk of buying uniforms. 

The great attitude's continued through to today - aside from an anxiety attack this morning when he reached the playground slightly later than usual. Fingers crossed that wasn't a sign of what's to come, it's wonderful completing school pick up without being invited into the classroom to talk in private about whatever poor behaviour he's exhibited that day and I'd very much like it to continue. His initial CAMHS assessment was done yesterday, so things are looking up for him a little more this term I think :) I'm so very proud of the effort he's put in this week - if it continues, I believe a new DVD and an outing to the park is in order this Saturday! Beavers, as far as I can tell, got a big thumbs up and we'll hopefully be returning next week. 

Wake up and smell the coffee.

Upon first hearing this expression I misunderstood and, the first chance I got, I grabbed my mum's jar of Nescafé, took a good whiff and almost fell off the counter; the smell itself was incredible, but overpowering to the point I actually felt a little faint. 

My enjoyment and seeking out of odd/overpowering scents didn't end there - since as far back as I can remember I've found intense enjoyment sniffing my way around petrol stations, the contents of my Mum's cleaning cupboard, laundry rooms, my worn shoes/underwear and (if they're nice enough to comply) other people, the latter becoming even more tempting to my nose as I (and the Sniffees) matured in age - believe it or not I seem to enjoy the smell of certain people's sweat more than I do vanilla! These habits, as you'd expect, lead to a fair amount of teasing - mainly from other children, but a few adults too. Added to my other strange behaviours, dreadful social skills and emotional outbursts (meltdowns) I may as well have been walking into school with a great big target on my jumper every day. School was (as it often is for children with any kind of difference) a very difficult time in my life, and at some point I'm sure to write more on that subject, but bringing it back to the original point; I was very much lead by my sense of smell.

Not only do I derive intense pleasure from smell, I also experience a temporary calmness in my body when allowed to sniff indiscriminately - in a world where things make very little sense to me, this can feel like a necessity. It's the same feeling I get when I can pace, flap or rock with abandon and without concern for other's perceptions. 

As a child I was uninhibited, for the most part, by a lack of awareness - both of how other's perceived me and of social responsibility. As an adult (an anxious, overly self conscious one at that) I'm far more discreet with my stims when around unfamiliar people. It took years to get to this point, but over time I've become a little more self aware, learning from my earlier mistakes through other's negative reactions and attempting to mask or correct my behaviour. I've developed techniques in order to be able to continue my favourite things; my secret hobbies. My efforts to hide these "undesirable" behaviours aren't always successful - self awareness will probably never be my forte.

As it is, the Space Cowboy apparently adores me despite my eccentricities - he even lets me bury my head in his armpit/crotch area whenever I'm stressed and need a calm place. Now that's love ;)

No matter what the social backlash, I sincerely doubt I'll ever stop - I don't even know if I'm able to. I don't know if life would hold any more pleasure for me if I were to withhold my "stims" completely. It's difficult enough to remember to not speak of certain things around certain people, to stop myself fidgeting during conversation or make sure I'm not swaying/pacing too wildly - usually while I'm trying to cope with whatever's got me so worked up in the first place. I'd truly love to live in a world where I didn't have to use up so much mental energy just trying to fit in - all of it to keep other people happy. Not even people I like. Most if not all of the people I like have no problem with me being, well, me. It's for nameless, faceless people - so they're not uncomfortable, or scared, or concerned, or disgusted. In the past I've dealt with all manner of negative responses - from strangers, friends and family, even lovers. This alone has contributed a great deal to the self-esteem issues I now face.

I'm writing this post in the hopes that at some point, it'll reach someone who will read it and suddenly feel a little less weird, a little less alone, if not make other's a little more aware :) It's not every day I admit to the public (and any friends/family members that read this blog) that one of my stranger habits is sniffing my underwear, but if that's what needs to happen so there's something, some kind of information, out there for people like me (even if you've not resorted to pantie sniffing) then so be it. While I'm at it, I'll also admit I compulsively scratch my scalp (and often chew said scalp out from under my nails), rub my hands over my face repeatedly to enjoy the smell of warmed up skin, walk on my toes when I'm really anxious/happy, compulsively pick my nose (I'll let you wonder about what happens with the findings) and manipulate/hyper-extend my fingers when I'm nervous or upset. Be kind, internet.