Failure or Progress? The mental health analysis

Welcome to Week 5! All I can say of Week 5 is that it has offered a veritable plethora of opportunities to practise self-compassion.

Joking aside, it has been rather an odd week which has at times baffled my attempts to disentangle my thoughts and responses to events and actions.

I'm glad I have engaged in the disentangling process though: it has been rather enlightening. When I originally wrote the sentence above, it read "has at times baffled my attempts to disentangle the positives and negatives." My rewriting reflects way my perspective is changing, which is actually a pleasant surprise, because as well as logically being able to produce the arguments I am beginning to almost believe them. Credit I believe to my psychologist and some really lovely people who keep talking sense at me. It's easy to forget where I've come from, or to feel discouraged when I see the long road in front of me, but little bits of change really are happening - something I never properly believed possible. I hoped, but I could not see how it could actually come about. I suppose that's why we go to therapy...

I did a Thing!

So yes, this week included a Thing. I did a Thing! I took a day off work sick. I mean, admittedly I did have to arrange it the day before, and I had to battle the Brian, but I did the Thing! And do you know what, I have such wonderful people around me that I spent the rest of the week being congratulated by various people (from Mrs School-Peggy to Mr Peggy, Welsh Peggy to Mummy Peggy and other lovely Peggies) for my rather unorthodox "achievement".

I fought with self-criticism and feeling useless, with bitter disappointment that I had spoiled my chance of a full half-term with no time off, and many other emotions, but those around me gave me another voice to hear. One that saw the progress in being able to recognise the danger signs before crisis. The bravery in deciding to communicate that to someone else and following up that decision. The seeds of self-care in listening to and acknowledging my needs when they aren't what I want them to be. A voice that may one day exist within me, as I realised that a term with a day off but without meltdown at school may genuinely be better than a term with full attendance leading to decline in my mental health and functioning level at work and a holiday barely recovering from the term.

Square Peggy 1 - 0 Brian

But then of course came FRIDAY. Just to test the battlefield. FRIDAY did not treat me well. I was fine in the morning, but was battered with two double-attacks of immediate and unexpected changes that re-wrote the whole day. I managed to weather the first attack with a good old tried-and-tested bathroom sob session and told myself that I could get to lunch time and then the afternoon would be OK (a low-stress activity for me that was as yet according to timetable). The second wave finished me off and as soon as everything was safe I excused myself for another bathroom session. Decided in a very grown-up manner to let Teacher Peggy know I was struggling, but we ran into each other on my way back to class and she bundled me off to Safe Peggy and I ended up trundling home.

Cue Brian trying for another point. I hadn't even managed the term without meltdown at school now. Why can't I deal with the things like other people can? Why should I be special? Not pulling my weight, useless, causing trouble: mean comments ad nauseum. And yes, I am still struggling with those thoughts, and with the worry that it will happen again or that I will end up back where I was, be unable to work full time etc etc.

BUT even there I know it is not all bad. I got through the first wave of death. I didn't go into complete crisis at the second ("I'm not counting this as a crisis because x, y, and z" was actually said to me!). I was able to tell somebody what the problem was. I looked after myself during the day - went for a tramp on my moor, really stuck two fingers up at Brian by stopping for a hot chocolate on the way home, and put no demands on myself for the rest of the day.

So for the minute, I'm practising seeing that "failure" and "progress" may be closer than I think. Treating myself with acceptance and aiming towards compassion. Not labelling things as "good" or "bad" but letting them just be what they are, with the rainbow of emotional responses that brings. (See this fabulous article by Joanna Grace on rainbow emotional regulation.)

And I am loudly expressing my gratitude for so many people who tell me things so convincingly that I almost believe they mean them, who let me experience a voice other than the one in my head, and who back me up when I nearly hear it myself, celebrating when I follow it. You have had a big part in any progress I am making. Thank you from the bottom of my heart for being with Team Peggy.

I have autism. This means some things are more difficult for me than they are for other people. It can sometimes be hard to be me, but it is not wrong to be me.

Failure or Progress? When the autism monkey invades

This term has been going pretty well. Admittedly I've flagged a bit since week two, but we're on the home straight: 4 of 7 weeks completed and this is the last week of my evening commitments so I know the next two weeks will have more space. I've got much better at dealing with things, understanding and communicating my needs and so on and so forth, so have been quietly looking forward to completing a whole half term clean: last term (an 8-weeker) only held one drama and that was solved by the new and groundbreaking technique of going home and recovering (shocking I know!).

We had a great time!

Then came this week. I misjudged the weekend, having a wonderful day dancing on Saturday with friends, but instead of taking Sunday as a nothing day I took the utterly wild decision of doing an hour's shopping on my way home. This sacrificed my alone time and I had jobs to do in the evening once Mr Peggy was in. I should know better, but sometimes I get complacent and think it can't cost too much to do one extra Thing at the weekend (I generally limit to one Thing per weekend, and try to keep alternate weekends empty, having learnt that this allows me to function during the week). Turns out it does if you're me.

Monday nearly finished me off and I knew I wasn't on top form for supporting some of our little people, so I did a Thing (bold just to differentiate from the Things above!!). I found Mrs School and told her I thought I needed to call in sick for tomorrow. Mrs School has been on this whole parade with me and understood what a Thing it was and was very proud of me for my great achievement. I spent the rest of the week being congratulated by various people for this step in my development: rather humorous but very powerful. How grateful I am to be surrounded by supportive Peggies who are invested in wanting the best for me.

So, having done the Thing I returned on Wednesday, back to functioning level and feeling rather pleased that my bravery had paid off. Yes, I did mourn the loss of my clean half term and deal with some rude Brian behaviour but I came out on top and realised that I am still the winner because actually, I recognised the need and acted on it before ending up in disaster-land. I was able to reflect that a half-term with a day off and without crisis at work is a better achievement than a full half term having dragged myself along at 25%, lost progress on my mental health and needing the full holiday just to begin recovering from the term. Yay! Well done Peggy!

Enter FRIDAY MORNING.

SQUARE PEGGY is much as she has been every morning. She struggles to get out of bed and reflects that actually, she does pretty well day to day. When you consider that by the time she gets to work she has overcome several difficult transitions and sources of anxiety (Getting out of bed, getting out of the shower, leaving the pets, getting out of the car. Dealing with the anxiety of possibly being late, what might happen during the day, whether she's been an acceptable human being etc.), it's reasonable that she sometimes feels a bit wobbly. 

FRIDAY MORNING presents SQUARE PEGGY with an email announcing that the weekly Friday morning meeting (that she panicked for the whole journey she would be late for) is cancelled. She doesn't cope well without this meeting and if she misses it her Friday always feels uncomfortable. FRIDAY MORNING then informs SQUARE PEGGY that assembly is semi-cancelled and to take place in classrooms instead.

SQUARE PEGGY cries in a bathroom for 20 minutes to process this information, then gets herself to class. She plans to try and tell someone it isn't a good day but this is difficult to communicate. She tells herself that if she can get to lunch time she is doing hydrotherapy in the afternoon and that will be OK. She can do this.

As she goes to collect the children FRIDAY MORNING informs her that the pool is closed due to illness. Five minutes later a visitor she had forgotten was coming for the morning enters the room. She holds it together until the children are safe and settled in class and excuses herself to visit the bathroom, where she cries for another five minutes. 

Long story short; Friday is not spent at school either. I've not had the week I was expecting, and today hit me right out of the blue when I thought I was fine.

A tramp on my moor solves a lot!

I have come a long way though: I am now able to reflect with less self-criticism and take on others' comments about the difference between this week's wobbles and those in the past.

On Tuesday I called it before it got to the stage of turning into a crisis. Full on win.
Today I had no idea it was coming, but actually I overcame the first wave of Bad Stuff and didn't completely melt down even at the second. I was able to verbalise what the problem had been, I didn't have to wrap myself in my blanket and calm down for half an hour, I could accept that maybe it was sensible to go home. I went home even though Mr Peggy was there, and I told him I was coming. I looked after myself on the way home, because I'm learning that I am not an exception to the rest of the world: I make progress when I am safe and cared for, not when I am told off and criticised.

I still have an ideal of perfect functioning that I feel substandard for not meeting, and the outcome isn't what I was looking for, but neither is the outcome entirely negative. I am learning, I am progressing, and as that happens I may well move more towards my ideal of functioning. But if I don't, I will accept that. I have autism. This means some things are more difficult for me than they are for other people. It is sometimes hard to be me, but it is not wrong to be me.

A sensory processing meditation

Imagine it’s Monday morning.

You are getting ready for work. You’re not a hundred per cent sure whether you can face the thought of another week. You’ve got some tricky meetings coming up and a load of data that needs to be done accurately, but you work with a supportive colleague and you know there’s some fun planned in the afternoon. Anyway, you don’t have a choice, because you have to pay the bills and your partner would hardly be impressed if you refused to go just because you didn’t feel like it. Not to mention your manager.

You get out of bed and prepare for the day. You’ve got an outfit in mind that will help you take on the day. What have you chosen? What is it made of? What colour is it? How does it make you feel? Relaxed? Powerful? Cheerful? 

Go and open the wardrobe and look inside. You see that your clothes have been replaced by a very impressive yet rather cumbersome suit of armour.

It’s the only thing there, and you can’t go to work wearing nothing. Your partner who drives you to work is hurrying you along. It’s time to go. You need to be at work. You have a meeting at 9. You can’t miss it.

It’s difficult to put the armour on. Your partner has to help with the gauntlets. You have no idea how you can even begin to do the day wearing this. You have to wear the sabatons on your feet as well. Your partner fixes them on and practically drags you out of the door. It’s hard to co-ordinate your movements.

You arrive just in time for the meeting, but every movement reminds you of this suit of armour. It gets in the way. It makes some very unwelcome noise in the serious meeting. It’s very uncomfortable. The corners dig into your muscles. You must present the information you have brought to the meeting, but you can’t see out properly. The helmet is too tight, squashing your head. All eyes are on you, wondering why you’re not explaining the data. Your elbows and knees rub on the hard metal every time you bend them.

Perhaps you can take your attention off your predicament for long enough to notice that everyone else is wearing armour too. But they all seem perfectly comfortable and are moving on with the meeting smoothly. 

The meeting ends and you never did manage to make a valuable contribution. How do you feel? Angry that you didn’t perform well and it wasn’t even your fault? Ashamed because the manager you wanted to impress was there? Upset? Exhausted? Not to mention in pain and way too hot by this point. But you can’t take the armour off. Everyone else is wearing theirs without comment, and it’s not even lunch time.

"Don't worry, you're fine really!"

You manage to find a friend on your coffee break and ask what is going on and how on earth they were able to cope in the meeting. You friend reassures you that everything’s fine. Don’t worry; you’re OK. Just keep going and focus on the things you’re doing. You’ll get used to it - see - we’re all OK. 

After lunch you discover that parts of the suit are actually lined with sandpaper, and that is why you feel like the skin is rubbing off your toes every time you take a step, and why you get such pain when you stand up and the suit rests heavy again on your shoulders. But when you try leaving your hands and feet uncovered after lunch, you are told in no uncertain terms that it is unacceptable to present yourself like that. You must look the same as everybody else or you have no right to be one of them. You think perhaps you would rather not be one of them, even though you were so desperate to impress this morning. You remember that there were parts of the day you would have enjoyed if you’d have been in that outfit you had in mind this morning. The one you couldn’t find in the wardrobe. 

But by now it’s an effort just to endure what should have been a fun afternoon, and all you want is to be at home, in your pyjamas, safe. 

The constant pain reminds you every minute that you are wearing this suit in response to a requirement of yourself (you can’t go to work naked and you must go to work), your partner (you must leave the house now, and we need to pay the bills) and your manager (you must look presentable like everybody else). How does that make you feel? Angry? Hostile? Rebellious? Now imagine that you have a condition where you find it difficult to comply with your own and others’ expectations or demands even when you need to do something that you really enjoy. How much more difficult does it make it to keep this suit of armour on?

You reach the end of the day, get the suit off and crawl into bed. How do you feel now? Defeated, that everybody else just functioned as normal but you couldn’t? Worthless, because you couldn’t overcome the challenge? Cheated, that you couldn’t enjoy the fun? Frustrated, because you couldn’t prove in that meeting what you really can do?

~~~~~~~~~~~~~

And how do you feel when you find out that everybody else’s armour was fake? Fleece lined and flexible. They weren’t acting differently because it wasn’t different. They didn’t see the difference in your armour. They didn’t listen when you tried to ask, and they didn’t believe you when you tried to say you couldn’t do it. “You’re OK”, they said. “Just get on with it.”

~~~~~~~~~~~~~

NEVER assume you know something about somebody or their experience unless THEY have told you. You can’t assume that because you, or the majority of people, find something comfortable or acceptable, that the individual in front of you also does.

You can’t assume that because you get a sense of belonging by looking the same as everybody else, that all people do. Some people find their sense of belonging in being understood and accepted. In feeling that their needs are reasonable and that they are supported to contribute to the best of their ability. Without that feeling, they will never have a sense of belonging, no matter how much they look like the others in a group.

If we want to call ourselves an inclusive community, let’s not miss an opportunity to create the feeling of value that is so easily stolen from so many vulnerable people.

Under the Tree

This week has been a fabulous week of lunch times on my bench under my tree. I have been very consciously enjoying making the most of the beautiful crisp autumn days, never knowing whether each will be the last.

The knowledge that these days will not last forever brings an urgent appreciation of each moment; drinking in the wonder and stunning beauty of every detail which floods my senses.

But my main train of thought this week paused on the ever-changing nature of my spot under the tree. Each day I come to my trusted spot: the same time, the same place (providing some outrageous member of the public hasn't chosen to ignore the big invisible label booking my daily slot...), the same routine of eating the same lunch. 

Many would find it boring, but although I must agree it is predictable (I find this brings me peace) I am never bored. The experience is never the same twice. Because everything else is safely constant, I can process and find pleasure in the change around me as the seasons progress and the weather varies. I feel connected to the real things in life, and the rhythm of the surrounding world.

Hot sun, cold air, gentle breeze, blue sky, angry clouds, dancing leaves, muffling blankets of snow, powerful wind moving my body, cotton wool clouds - the elements are my trusted companions.

Surprisingly often they mirror or complement my internal state, for as I sat this week, I realised how ever-changing I am too. On no two days do I arrive on that bench as exactly the same person. A thousand things conspire to present the me that exists at any time. Some days I am cloudy, some days the sun is bright and the sky deep blue. Sometimes I am silent and muted like the snow blanket, or I need a forceful wind to counter the turmoil inside. Even on the worst days there will almost always be a snippet of birdsong or a tumbling leaf to bring a passing moment of joy.

And the conclusion that I came to is that it is absolutely fine that a different me stops under the tree each day. It is as natural as the constant change of the sky and air around me. If every day were perfect blue skies and sunshine it would lose its magic, and I would miss out on so many of the other wonders to experience. I will not always be perfect blue skies and sunshine, but neither will I always be cascades of raindrop tears. Each moment will pass to make way for another, which in its turn will pass. 

Some may linger longer, but none is permanent, and this is the natural way. I may not be OK, or I may not have been able to make the best choices, but that is a part of the story, and that is OK. Wait and see what the next moment brings. It may be similar; it may be different, but I'm trying not to write the story before it happens, and to accept the way it unfolds with interest and compassion.

Busy Being OK

I can't really be sitting here by a field, the wind in my hair, birds in the air, while the day is carrying on without me. And I am not there. I am supposed to be there. I have a duty to be there, and The Plan was to be there. I can't not be there. Yet the wind in my hair and the pain in my stomach tell me I am here, and so do the tears as they start to fall. It's a cruel twist that the wind helping to calm me is carrying the voices of the local school children playing outside.

There are difficult conversations to be had, and difficult, heavy decisions to be made. The magnitude of the moment is at once a crushing heaviness and a weightlessness of incomprehension. For now, all I can really understand are the wind, the flight of the birds, the movement of the clouds, the water droplets on the leaves next to me. The tractor in the field behind me turns the soil. I remember how to breathe again.

Now, with the sun on my face and the wind moving my body, I know that for the minute it is fine to be busy being OK. I will sit here for as long as I need to.

I sat next to a field for two hours. Not quite true. I sat next to a field for an hour and a half, then I did some mindful stretching next to a field for half an hour. Then I went for a walk. I crunched leaves, I followed butterflies, I laid on the earth with the sun on my face. I stopped to watch the water sparkle and the dandelion clock fly away on the wind. I made a moment for the tiny blue wildflowers, I smelt the cowpats and I felt the textures under my feet. I let myself be captivated by the dancing and flickering of tiny white leaves bright among the darker trees of the woods. I remembered me. I am very grateful to be able to do these things, no matter what else I can or can not do.

Review of William's Den

Not my usually blog post, but I just loved this outing. I had at least as much fun
as the person I took with me! https://www.williamsden.co.uk/

What an absolutely fantastic place! Having heard about William’s Den from colleagues in a special school, several of whose classes had visited for their summer trip, I decided to give it a try with one of the young people I work with. We were not disappointed! The site is great in that it provides and endless range of opportunities through carefully thought out resources.

There are many different types of resources, from traditional children’s climbing frame equipment with slides, ladders, monkey bars and more, to water play and sand play (with tethered accessories including funnels, pulleys, and all different methods of processing and exploring sand and water!), zip wires, sticks and planks for den building, balancing and whatever else comes to mind, tunnels and hills, wide open spaces (yet all safely contained), a wild grass meadow, mud kitchen, tyre swings of different shapes, a grass theatre and more.

It is a place where the imaginations of children of all ages can run wild. It is designed to encourage interaction (circles of swings instead of lines, and countless opportunities to collaborate on projects of all descriptions). It invites playful, exuberant whole body movement and children and adults of all ages can be seen running, climbing, balancing, tipping, hanging, stretching, falling, swinging, crawling and sliding as they play. If you want to know why I’m raving about that, visit www.jabadao.org. More and more research is highlighting the terrifying effects that our society’s lack of value in movement is creating. One study showed nearly 90% of children beginning school with physical development below expected levels, which impacts on learning in all areas. (And I’m so annoyed that I can’t remember where I learnt that! Here is an article that could have used the same source as whatever I watched or read.)

And if you’ve ever wanted to see an example of somewhere that facilitates learning through play, I couldn’t point you to a better site! Not only is it a natural environment for physical play and  collaboration and communication encouraging language and social development; the possibilities for exploring every area of the curriculum are tremendous. Real-life maths and science come into their own as children of every stage of development explore sand and water at their own level, filling, pouring, using pulleys, building simple or elaborate structures. Problem-solving skills are put to the test, and experimentation is invited as the resources are versatile enough that they do not just suggest one use, but can be employed however the imagination leads. Resilience, risk assessment and many other vital areas of psychological development are also promoted and supported through the environment. For sensory learners there are not just a lovely range of natural textures to touch with different parts of the body, but opportunities to create sound and experience vestibular and proprioceptive movement. As the young person I visited with is very mobile, I’m not the best to comment on the facilities in a physical accessibility context. Hopefully somebody else can! I would say most of the site is wheelchair accessible. There is a "disabled toilet" but I wasn't able to inspect and it is not advertised as a Changing Place. A person requiring a hoist would be unable to access the upper levels (and much of the equipment) as far as I know, but if a one or two person lift is safe this would enable use of many of the ground level areas.

The whole site is built responsibly with sustainability in mind. The play equipment is made from natural materials which are “pre loved” wherever possible (which also makes it aesthetically pleasing and a calm environment! On which note, I noticed as the day quietened down towards evening that there was relaxed but pleasant music playing: a welcome change from the tinny, jingly or slightly manic music often to be heard at play venues!), rainwater is harnessed to power the toilets, and even the floors and ceilings are made with waste and recycled materials. This is just a taste - for more see https://www.williamsden.co.uk/sustainability/. I can’t comment on most of the food, but if the ice cream is anything to go by, the cafe dishes out first rate grub (but there are also covered and open air picnic spaces), and as well as the usual knick knacks in the shop are some lovely toys which reflect the ethos of William’s Den (accordingly priced!).

And when you get tired there’s even a room upstairs accessed from the climbing frame with a beautiful view out over the surrounding landscape, with great big bean bags and some soft bricks for building if you or your child is in need of a more relaxed spell.

Staff are attentive, all areas maintained constantly to a good standard, there is a space to put your mobile number on your child's wristband if desired, there are food places with visibility to the play areas, and from outside one set of toilets you can also see through a large window to keep an eye on any remaining children or so your children can find you easily.

In a time when so much time is spent indoors looking at screens, interacting through technology rather than face to face, here is a place where the whole family can spend quality time interacting, exploring and developing. I can’t recommend it enough!

A Summery Summary

The day is fast approaching when those of us lucky enough to have enjoyed a long summer break will be plagued with kindly-intended enquiries as to just what we did with that break, precisely how much we enjoyed it (it had better have been a lot!), and how we are feeling to be back.

Somewhere on my interwebs the other day this quotation popped up (and yes, I did have to Google Georgia O-Keeffe) and it struck me as a particularly apt summary of my activities for the last six weeks.

As a matter of fact, I have done some lovely things while I have been off, although how much others would value them is probably quite variable! The salient point for me, however, is not precisely what I have done, or precisely where I have been, but the effect all of these factors has orchestrated. *Spoiler alert* The effect has been wholesome, refreshing, and perspective-altering.

Now as the final term of the school year drew (or was seemingly imperceptibly dragged, clinging onto every last moment...) to a close and I battled my way through fairly crippling anxiety to prove that I could do this thing and make it through, I was of course aware that my view was maybe a little skewed and that I had lost sight, or at least reach, of some of the things that matter. I'm not completely naive or blind, and I knew I could do with some rest and recuperation. In my dear brain this is not a possibility in term-time, when I "should" be at work regardless of whether I am in a fit state, (I'm sure they'll take well to the suggestion that my personal development target for the year be to start taking days off sick...) so in the summer holidays I can finally really relax and let go without feeling that I'm letting anyone down or neglecting my duty. (A duty which I also enjoy. This was one of the worst things about last term/year: finding my enjoyment being stolen away by the difficulty of navigating each day, and knowing the effect that this must have on those in my care. How I clung onto the moments of joy and peace that were found together with children in those days.) In this long holiday I also have enough time to completely adjust to the change in routine and therefore enjoy the full benefits. In a week's holiday it takes about 4 days either side to adjust to the change, and so I get about one day in the middle of proper rest.

Is it worth it?

So, onto the matter in hand. As I left the car park on the last day of term I waited for the rush of achievement that I'd made it through: I'd done what I set out to do, and yes, I may have had to be picked up a few times along the way and had to take some measures to make it manageable, but I had done what needed to be done. The rush of achievement never came. Which I can now see with a slightly removed perspective, shows that I really had pushed it beyond the point of sense. I was so washed out that although I had physically completed the task I couldn't take any pleasure in it.

It's not all gloom and doom, though! Things started to look up from that point. I have learnt from each previous year's experience that it is vitally important how I sculpt my six weeks off. One year I did way too much and didn't have enough moments of down time. That's probably one of the reasons I got poorly in the first place. The following year I determined not to make the same mistake again, and left a nice big empty space after my engagements. Turns out that's not ideal either! This year, I think I finally hit the sweet spot. I alternated a few days to myself (usually about four or five) with more socially intense periods (also kept to a few days each mostly) of really positive interactions for me.

They are pretty cute after all...

This was absolutely just what I needed. After a few days I managed to adjust to not being at work and that stressor gradually left my body. I spent time with my family, time dancing (a perfect arrangement of four or five hours of dancing daily, small windows of socialising through the day and evenings completely alone), time visiting very dear friends and rare time away with just me and Mr Peggy. All in manageable chunks with suitable recovery (and ballet/movement classes/therapy/cuddling guinea pigs!) in between.

Time with the different important people in my life gave me not only stimulating conversation but the chance to reflect on how things have been and look at them from different viewpoints, and to re-appraise where I place the value in my life. Spending time with others whom you don't often see and living in their lives for a few days highlights the different possibilities for how things can be that you don't necessarily see when stuck in your own day to day routine. Space away from the daily close-up focus has really helped.

The sea is always a good place to
blow the cobwebs away

Not only have I had time to reflect, but I have had time to rest. Just to be, and not have to do, to follow my body when it tells me to be still, to move in play or to move in work. Often when stuck in the busy I worry that if I listen to my body when it tells me to stop doing, that I will never feel able to start doing again (clearly I am not entirely unaware that I am doing too much...), but this has not been the case. It really has shown me when to do what, and I have found that both liberating and reassuring. I feel much more at peace, much more alive, and much more me. I am no longer a ball of overwhelmed, but by waiting myself is beginning to be myself again.

Let's see what happens when the focused waiting time is over.