Drama Club, the Worst Walk Home Ever and "why I don't get left to my own devices"

Last week, the Soulful One took part in a free trial for a local drama academy to see how he took to it (at £100 a term, I'm not taking chances or assuming he'll enjoy the class and/or listen to the teacher) and I'm happy to say we'll be back again this week.

We took both pairs of ear defenders as the Feral One was joining us (no childcare and the class happens to fall on one of the days the Space Cowboy is busy with his boys), of this I'm very glad as it was indeed quite a noisy class! FO brought his big motorised Thomas toy along which, unfortunately, was just as noisy; as the bathroom was located a few feet away from the main hall I set him up in there away from the chaos - don't worry, it was a very clean bathroom ;) this way I could watch them both.

SO joined the other children around the teacher; he listened very well for the first 20 minutes or so. Once everyone was up and out of the comfort of the circle on the floor, he began spinning around (as he tends to do when his mind wanders and it's a busy environment) and forgot to pay attention. I brought him out after a few minutes of this, gave him some juice and asked him to try again. He managed to follow what she was asking of them for a few more minutes before lapsing back into spinning.

Meanwhile another little boy had decided from the outset he was NOT taking part, and made his frustration at being made to stay very clear and very... verbal... :) sweet relief from the shrieks was found when he noticed the Feral One and Thomas in the bathroom. They somehow managed to share without having what I (and, I think, his parents) were expecting to be a WW3 style blow-out, so all was swell in the end. He actually gave it a bit of a go toward the end, once the pressure was taken off - nice to see him turn it around, whoever he was!

I kept watch over the Soulful One as he ran about the place - which was fine as the others were also running, though with purpose and doing actions, he wasn't causing a distraction to the others and the teacher seemed completely unfazed by his antics. I called him over once again when they were being asked to line up in groups as he was, in typical SO fashion, rolling up and down the gym equipment at the end of the hall, completely oblivious to the ongoings nearby. More words of encouragement, more juice and a bathroom break later I guided him back to the group - this time, he managed to follow what she was asking of them for around 10 minutes. Although a little erratic and highly comical, he copied actions and (sort of) stayed where he was told to when asked; he even said a phrase on cue! Proud is an understatement :) 

With less than 10 minutes left, I began getting the Feral One prepared for leaving and we stood together watching the last few minutes of class. SO lost interest again and went back to his gym equipment but I didn't push him any more. He did, however, managed to sit down for a minute at the end while everyone gave themselves a clap, received welcome packs and said goodbye. We were just leaving when I turned and walked head first into a table leg (one stacked upside down on another), smacking just under my eye and instantly howled out the word "F**K!" amidst a sea of small children and their parent(s).

This was the start of the Worst Walk Home Ever.

Holding my face in equal amounts of pain and shame, we left the centre and crossed the road to the shops. I sent the Space Cowboy a text to let him know we were beginning our walk home and to tell him my tale of woe, we stopped in the shop to get some treats and I bought a bag of chips from the nearby chipshop for the boys to share at home. Feeling like I'd successfully recovered from my earlier mess up, we headed home.

Ten minutes into our journey, the Feral One vocalised his need for the toilet. I swallowed panic and asked him to hold it as long as he could, we were nearly home (lie). SO was walking slightly ahead as he tends to do, so got to the subway first. He likes to climb up the sides and, as FO and I got closer I noticed a cyclist coming toward us on the path... right as SO started running from his spot on the side of the subway. They almost clashed but luckily the cyclist was able to weave and I reached him about the same moment. I chastised and apologised, we moved on and I sent another text to tell SC of the scare.

We were now just ten minutes from home, crossing by our local skate park, FO repeatedly letting us know he needed the toilet and SO sulking after being told off. I didn't hear them at first, I still had my ear plugs in from being in the centre, but then I turned to see a group of young lads asking me to throw their ball back over into the court they were in. I accepted, walked a few feet into the field and tossed it over. We started walking again when, a few minutes later, I went to check my phone for a response. It wasn't in any of my pockets, so I put the bags on the pavement and checked them again, then checked through the bags.

Panic rising, I started back at a light jog, shouting for the children to follow. I reached the spot I stopped to help the boys and searched all around; nothing. I began to cry - I don't like admitting this, even partly anonymously on here. I've tried many therapies and distractions, mindfulness and meditation but nothing has ever been able to stop my tears from falling during times of panic.

 Taking hold of the boys' hands I began to head back to the spot where I sent my last text but it was useless - the phone was gone. As we walked past the skate park again, I checked where I'd walked again but when I came back - this part was what broke me - my poor boy had given up and was stood in wet pants and a little puddle. I sobbed as quietly as possible, hugged him and told him how sorry I was for making him wait. We hurried home as fast as we could but the tears just wouldn't stop - only the Soulful One was dry eyed.

We threw ourselves through the back gate - I'm not sure I've ever felt more relieved to be back in our "safe space". I started running a bath for them and put a movie on in their room for them to sit while we waited for it to fill - I'm both ashamed about the the next part of this story and shocked at the ferocity in which it happened. As I've done in the past during extremely stressful situations, I harmed myself. Badly. Not badly enough to require hospital treatment - just steri-strips at the walk-in centre later on. My arm is still bruised from the bite marks and 3 of the 17 cuts on my arm and leg are still weeping. I'll remember this one for a long time - not least because of the scarring. I cleaned myself quickly and wrapped flannels around my arm and against my leg, hiding the evidence before bringing the boys in for their bath.

Quickly bathing the boys, I reheated their chips and rang the Space Cowboy from the housephone. I'd somehow managed to stay calm(ish) around the boys, especially once we'd reached the house. Within moments of hearing his voice I broke down again - I couldn't calm down enough to articulate what had happened in any way, shape or form. He eventually said he couldn't understand and was going to have to hang up if I couldn't calm down. He had to hang up. When he got home 40 minutes later, I was rocking myself back and forth in the middle room and the children were in their beds - granted I'd forgotten teeth brushing, school reading book and, very likely, a few other things too.  

Now we're here. We're trying to find out about the possibility of having another carer stay with me during the hours SC has to be away - I'm simply not equipped to handle stressful situations. This is part of the reason SC stays with me every other time - the time he has with his boys is just not a time he should have to part with. He cares for me for 156 out of the 168 hours in a week. He deals with everything; medication, communication/translation, travel, emotional outbursts and everything in between. He's my hero but he's also human, he can't be here every single minute of the day. Unfortunately, autism and its co-morbids don't have a pause button and neither does life, nor it's stresses.

You make me sick...

Often when I'm watching the boys, I'm reminded of myself and my own childhood; particularly when they're having difficulties with certain aspects of life, such as food textures, making friends or crowded situations. I relate far better with them than I do most of my peers - whether that's because they're children on the spectrum or just them being children in general, I don't know. Perhaps my own immaturity lends a hand in this; though I do still struggle with talking to them (especially trying to explain, well, anything to them - I'm often a bit too "adult-like" or formal for them to understand much of what I mean, I forget I'm talking to a 6 year old and end up discussing politics or psychology experiments with him - much to his curious amusement) I find their company so much more enjoyable than I do people my own age. I have far more patience for children, and find their bluntness very refreshing indeed. 

Autistic children, I've found, bring about even more joy and comfortability; their autonomy meshes so very well with mine. My partner's middle child, a non-verbal almost 5 year old with quite severe sensory issues - I'll call him The Wanderer - him in particular I could spend hours with and not once feel the need to escape and be alone. The comfortable silence, broken only by the occasional verbal stim, makes for a beautiful companionship indeed. Not only is he a joy to be around, but I feel a deep understanding for some of the issues he faces - despite him currently being on the "severe" end of the spectrum, we have a lot in common; probably more so than I do with "neurotypical" people.

As a child, I ate very simple meals and drank only water. My mother tried in vain to get me to be more adventurous in my food, but even if she tried to pair two foods I would actually eat together to make a "new" meal, I'd just separate them. Plain, "orange cheese" (Red Leicester) sandwiches with margarine only (I hated the taste of butter) on the same bread every time, toast, salted crisps/chips, billy bear and occasionally some sweetcorn, and bizarrely enough, marmite and olives. I refused juice and only ever asked for water - despite many desperate friend's parent's attempts to get me to accept juice ("surely you don't want water, we have juice you know, are you sure you wont have some juice? There's plenty of it! Well, I'll make some for you anyway, it's very nice..." who would think such a thing would be so important to people?) although I'd have warm sweet milk if I was feeling reckless ;) 

Still to this day, I'll only usually drink water, and, when I'm sad or unwell, the only thing I'll feel up to eating is a plain orange cheese sandwich. As a child (and often as an adult) if pushed to eat something I wasn't up for, threatened with nothing else for example, I'd simply not eat. I'd starve myself for days, weeks even, rather than eat whatever's being forced. Luckily these days I'm far more adventurous, but there are still some textures/tastes I just can't eat without gagging. I won't even try any more; I'll have the occasional impulse to attempt to eat one of my "no list" foods once every few years, and each time I've regretted it. Usually it's down to texture - beans, nuts, rind, and anything cold and a little slimy, such as ham or fish (especially salmon) being the worse culprits. I can't chew any of these things without having a physical response to them, so to bypass this in otherwise edible meals, I often swallow whatever it is whole. Perhaps not the perfect solution, definitely not good for my digestive system, but it's made eating adventurously a real option. 

I mostly stick with what I know and love (which now includes more options, thankfully) but thanks to my parents backing the f**k off (to put it bluntly) when I reached school age and just letting me try foods in my own time and on my own grounds, I've managed to expand my taste buds independently and without anxiety making it that much harder. I can't stress enough how pressuring certain children into eating foods they're simply not able to eat without discomfort can do this - anxiety already rules our lives for the most part, adding more is just asking for explosives to go off.  

Obviously I'm not talking all children, and of course there'll be plenty of situations a little bit of pressure/bribery works. I'm talking when the child is becoming so distressed they're hurting themselves, or when they're showing that they'd rather go without eating altogether than try the thing you're offering - even if it's the only thing offered all day, or the day after that. I'm talking when they gag or clamp down so violently you'd think you were trying to force dettol down their throat, not a jam sandwich. I feel your pain, I know your worry - and of course there are many children that won't even eat ONE thing - that must be terrifying to experience and I don't wish to say you're doing them harm - in this situation, I believe an exception should be made. Better a living, anxious child than a calm, dead one. But if your kid can't handle more than a handful of different meals, just stick with what works and offer a new meal once a week - even if it's one you've offered before that's been turned down. I only tried mayonnaise (despite it being offered previously) for the first time at 15, then again a year later - I hated it. I tried it again aged 22 and love it now. These things just take commitment, trial and error and a lot of patience. A decent cook helps too ;)