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:

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. 

It's a, nice day for a, white wedding.

So, we missed my sister's wedding. Half sister, and not what you'd call "close" but still, douche move. Couldn't be helped though - one spectacular meltdown right before we were due to leave made it so. There was no way of arriving on time by that point, in fact we were over an hour late by the time I was calm enough to try and leave the house. 

But, we made it to the reception! Which is almost as good, right?

We had some minor hiccups, an anxiety attack from me in the beginning (room packed full of people I don't know) and an eventual deterioration of Jack's behaviour (same reasons as above plus over excitement/over stimulation). But he pulled it back, and we managed to stay well into the night. By the time we got home it was a race to get to bed first - kids won, mainly because the youngest dozed off in the car. :p

They met their Uncle Robbie for the *first time ever!* and I met my beautiful niece Lexie. Over all a good day was had :)

Routine Parenting

I've always been a pensive person. Most of my free time is taken up on thinking. It's my favourite pastime. During these "thinking sprees" I often recall *other* thinking sprees from times past. Today was much the same - post meltdown and at my rawest, my need to think overrides all other usual necessities; communicating, moving, seeing/hearing, or rather, paying any mind to those inputs. Everything else shuts down, as there is no room amongst all these thoughts. 

Today, I recalled a thought process I had in my late teens - a time long before I really understood Autism Spectrum Disorders. I'd been reflecting on how, as a younger teen, I had lived with each of my parents for varying lengths of time, and found that despite my father being far more strict (enforced bedtimes were, for example, still a "thing" even at the age of 15) I wound up being far less prone to meltdowns and, dare I say it, happier with him. This was not because I hated my mother, or loved my father more - though no doubt I've said or thought as much at some point. This, I believe, was a result of living with a man who also depended on routine; a man who enforced said routine without even realising it, because to him, it was just life. As a younger teen, I was unable to process this idea, to even consider it really. I just *felt* better. 

I am in many ways my father's daughter; this is apparent on paper as well as by spending time with us together - we're both introverted book lovers with emotional and social difficulties. He, like me, feels both half and double his age at the same time. We're peas in the proverbial pod. Our need for routine is just one of many traits we share. 

Most if not all of us need some routine in our lives to feel "normal" or safe. The need for predictability is, by and large, a human trait; it allows us to function within our own little set perimeters, to feel secure, to know what's coming (at least, partially). But what separates my father and I from the majority is that without routine we simply can't function. The intensity in which a change in routine effects us is likely beyond belief - who would think a 23 year old woman could behave in such ways as a result of such minor changes? I'm an otherwise "highly functioning" adult and yet have reactions not unlike that of a 2 year old's in response to change (and of course emotional and sensory overload) - often over things that most others would simply shrug off. Back then, I had absolutely no explanation as to why I thought, acted and felt the way I did - as did other people (bipolar, depression, and post traumatic stress disorder to name a few ideas) but nothing ever "fit" or explained all of my behaviours. 

These days I'm more than aware of the Autism Spectrum and understand far more about myself and how my brain works. The need for routine is, of course, one of the most well known associations with autistic people. Unfortunately, my very limited understanding of "high functioning" autism was "Rainman" style, and indeed I'd never met/heard of a female with autism back then - I just hadn't ever felt the need to research autism until I met my partner, and even then I just read about male children/adults on the spectrum. I definitely noticed the similarities even then, and very luckily mentioned this in passing to my mental health nurse - who agreed, discussed the similarities with me and did some initial assessing, later referring me for diagnosis. This prompted me to delve even deeper into the world of autism - including the still largely unknown female population. What I discovered, and what I'm still discovering to this day, has changed my entire perception of self. My relationships. My life on a whole has changed dramatically, and yet I'm still almost exactly the same. I've always been autistic - it just took longer than it should have to find out. 

My life isn't as rigid as some are, and for the most part, my routines don't interfere too much with living - luckily I'm in the very fortunate position of living independently (to an extent). But they have interfered with relationships (both personal and with friends and family) and often cause extreme distress if the things I've come to expect don't come to be. 

I began writing this post because I needed to get my thoughts out of my head and into the world - at the time I of writing I'd become mute and had no way to let them escape. I'm going to end it here, as I have no conclusion.