Is it OK that Everybody's Toolbox is Different?

Somebody that I know has been thriving in a setting that is fairly new to them. It is a very controlled environment with minimal disruption to routines or unexpected occurrences, and a limited number of people, nearly all of whom are known and only a few of whom are regularly in the room. There is little change in the sensory environment beyond daily variations caused by weather etc. This person notices any other changes very quickly on arrival into the room and discusses them to help them process the difference. When the person is tired they are easily overwhelmed by sensory stimuli or mishaps, but generally they manage well and thrive in the setting, developing skills rapidly and displaying positive signs of good wellbeing. 

Masking serves a protective
purpose but is harmful

Life at home has improved too. More dysregulation is seen than in the setting (Home is a safe place and it is completely normal for more distress to be expressed in the home. Where the distress is displayed is often not the same place as the place that causes the build-up of stress.), but markedly less than before spending time in the new setting. This means the improvements seen in the new setting are likely to be genuinely benefitting the person rather than them masking until they get home and then experiencing even worse distress.

The situation that is causing most difficulty for this person at the moment is going out and about in the world. In the new setting and at home independence skills such as walking and managing their own levels of sensory tolerance (eg. asking to wash hands before sensations become completely overwhelming and lead to meltdown) are really coming into their own and meaning this person can access many more of the opportunities they want to in the way that they want to, but it's frustrating for them and upsetting for those spending time with them that this isn't working in the community yet.

The noise of the street has been raised as one issue that may be contributing to their overwhelm and dysregulation when out and about and my first go-to was to wonder aloud whether they would benefit from trying ear defenders. The initial response from another person in the conversation was hesitant. "Hm... but we wouldn't want them to get overly dependent on them and not learn to cope. They might just wear them all the time because of the novelty factor."

Now, ear defenders or noise cancelling headphones are not a simple fix. Some people find the physical sensations of having them on their heads worse than dealing with the sounds. They are more effective for dulling certain sounds than others so their usefulness depends somewhat on which sounds are bothersome. So they may not be useful for this person anyway and I'm certainly not going to enforce something that doesn't benefit a person. But at this point I was simply thinking allowed about offering an opportunity to try them out in case they did help, and the initial response surprised me from someone who is enormously caring and only ever wants to bring benefits to people's lives. 

To begin with it bothered me and I felt cross that they could be so cruel and potentially deny someone something that might help (the person described wouldn't be likely to have this idea themselves or the possibility to source the resource) because in their view using ear defenders would be a negative thing. Then I had a word with myself and realised that this was not the intent. I know this person and they have no malicious intent. They want to help, but they are uninformed and I might be able to help them to see a different perspective. 

The beauty of a good working relationship and reflective people who genuinely want the best is that we can have these conversations and we are willing to change our opinion when we are shown new aspects of a situation that we weren't aware of. 

New skills and resources are so much fun!

I pointed out that our friend does definitely overdo things on the novelty factor but that it only tends to last a couple of weeks. When they learnt to drink out of an open cup with a straw they drank excessively for two or three weeks, but this soon regulated itself to a normal intake with little to no input from those around. 

And what I hope I remembered to convey is that tools and aids are called tools and aids because they do just that. They help. They mean you can do more than you could otherwise. Just because someone can walk short distances sometimes doesn't mean that they should never use a wheelchair if it means they can access places where they can't walk the distance, or where they can stay for longer because they haven't used up the energy walking. Using a wheelchair to get around a shopping centre might mean they can get out in the shops to look at the items, and that they can visit more shops than if they were walking. And anyway, if someone needs to wear ear defenders 24/7, why shouldn't they?

"Learning to cope" is a dangerous phrase. It usually translates to "learning not to outwardly show distress." And if that "learning" has ever happened to you, you will know how dangerous it is. Sensory issues can change over time but far more often the distress is simply transferred. It may well be internalised, meaning immediate distress is not seen but building higher levels of background stress and lower tolerance to triggers: more meltdowns later. Sometimes there is shutdown instead of the forbidden meltdowns (these are just as distressing for the person, but don't tend to bother others), or people learn to dissociate, or self-harm in a hidden way to cope with the overload. The damage to a person's identity from learning that who they are is not acceptable leads to mental health problems that may or may not display in typical ways. The exclusion from activities and settings that they could enjoy and benefit from with a few simple accommodations is not only a shame and a sad thing that people are missing out. It is a disgrace if there is something we knew we could do or offer (or allow others to do) and we don't. 

You wouldn't deny someone sunglasses at the beach because if they just went without then they'd learn to cope. You know that not wearing sunglasses wouldn't kill them, but you also know they will enjoy their day more if they are wearing them. 

Would you tell a short person they should really be able to manage without using a step to reach something on the top shelf? Would you refuse to let a dyslexic person use a colour filter to assist their reading and tell them they will manage in the end without it?

Aids used by people whose brains use more space to deal with input or tasks are exactly that. They make life easier, they make tasks quicker, more comfortable, more enjoyable and allow people to do more of what they want and need to do. They do not signify laziness, a desire for attention, or weakness. They are tools used by resourceful people who are actively trying to participate in their own lives in a world where that is more difficult for them than for other people.

Everyone uses tools, it's just that you're used to seeing sunglasses, dishwashers, cars and scissors. Next time you see a tool in action that you don't use, instead of writing it off as weirdness, laziness or weakness, have a look at the function it provides and see if you can imagine all the different benefits it brings its user. 

Some tools seem to bring judgment on their users, and it isn't right.

Edited to add: Variable Conditions

This happens all the time to people who use different tools from "the norm" and to people whose conditions vary (think of the wheelchair example above). If someone doesn't need an aid all the time, it still doesn't mean they are being weak or lazy or demanding attention when they do use it. It simply means they have greater need of it at that time.

Even in a special school where we should be helping people find skills to regulate their own internal state in whatever way works for them, I see judgment of using tools and aids worryingly frequently. Talking is somehow "better" than using AAC (alternative or augmentative communication, eg. text to speech apps, writing, Picture Exchange Communication System). If you can talk suddenly it may be frowned upon to use a different method of communication even though they've been teaching you to use it for years... And you can say more with your AAC... And you can say it with less stress with your AAC... Surely communication (and thereby increased wellbeing) is the goal, not speech?

I'm here to say, as a generally verbal autistic person with relatively low support needs and a largely independent life, these things matter. I am non-verbal at times. Just because I can talk most of the time doesn't mean I always can. And even when I can, it doesn't mean I can say what I need to say or that it's my most effective communication method. In therapy I have used writing at least as much as I have talked. In some situations eg. shutdown I use a bit of signing, or flashcards or write a note. It gets my problem solved, which I wouldn't be able to do verbally. The more tools we give people to put in their toolbox (and support them to be able to use them), the better equipped they are to fix problems and to build things they enjoy. Why wouldn't we?

Change and the difficulties with acknowledging it

Change is ouchy and yucky. It means moving away from the familiar and predictable where I know what to do and what to expect. It means I don't know what will happen or how things will be. It means different, and for me, different and unknown is unavoidably tagged with unsafe. 

So if a change is happening I am automatically vulnerable, and my brain is telling me I am in danger. This is part of my autistic neurology not just a psychological conditioning that I can teach myself to think differently about.

A change in myself is extra problematic, because not only is the world unpredictable and unreliable, but I myself become so. For a while I am not who I am used to being, and I don't know what I think of the new version. Initially, different is almost always wrong (again neurological, not a conscious choice), so I must learn to accept the new version and whilst doing so any reminder that it is a new version increases the awareness of change and feeling of discomfort.

An unwelcome or unchosen change, or one I have no control over, feels even more unsafe, for obvious reasons.

So I like to keep my information safe, to be in control of people's perception of me, to have any changes I do decide to make firmly fixed in my head and adjusted to before they are presented to others.

When I tell someone a piece of information I am no longer in control of it. It is like a little bit of me has been stolen and I don't know for certain what will happen to it. It might get shared with more people, so I might get a shock if someone talks to me about something I haven't personally told them about (it may or may not be that I don't want the other person to know, but I certainly want to know who knows!). Or something else may happen with the information. If I tell someone I like stripy socks, they may go and buy me three pairs of stripy socks thinking it will make me happy. I might like the new stripy socks, but I did not expect them or ask for them and so they cause disarray in my mind. They might even be the wrong kind of stripes, or the wrong kind of fabric, or I might not have space in my drawer for any more socks, or I might have been looking forward to choosing myself some new socks when I had worn through some of my older pairs, but now I can't justify that because I have too many socks already. I must remember to communicate my gratitude for the gift in a neurotypically-understood way, and figure out whether I am to reciprocate in kind, or in some other way at some unspecified point in the future by doing a favour or giving a different kind of gift (which I must then remember to do!), or whether it would be considered strange or ungrateful to give a gift in return. This is a hypothetical situation but one that could happen to me, just to give you an idea of how even a simple piece of information can run away from me and cause difficulty, even though everyone's intentions are kindness and I might well like the socks!

Other people having my information brings all kinds of unpredictability. In addition to the issues above, simply the fact that they now know the thing in my head means that they may choose to talk to me about it at a time when I was not thinking about it, and that is unexpected and out of my control, which makes me feel cross, which is actually because I don't feel safe because things are out of my control and unpredictable. I find it easiest to talk about things or make changes or decisions when I am in control of them and they can't run away from me and take on a life of their own.

Changes and decisions take me a very long time to process. When I need a new phone, I start thinking about six months before my contract runs out "Soon I will have to think about what phone I am going to buy." I then need to look several times at what is available, over a period of several weeks (usually a month or two), ideally both in shops and online, before I am ready to make my decision, buy the new phone and change over to it. I thought about dying my hair for probably about ten years before deciding to actually try it, then for a few more months as I decided whether to really do it, when, and which shade to buy. It then took me about three weeks to get used to without being put out at my own appearance in the mirror. And the shade wasn't that different from my natural colour.

I tend not to consult other people until right at the end of this process, when I feel I have got my head round a change that is going to happen. I would rarely share that I am thinking of getting a new x, y or z, because somebody might get one before I'm ready and I hadn't decided which one I wanted. They might not get the one I want, or, because it takes me so long to think about it, I wouldn't know whether it was the right one or not - I am rushed into making a decision or someone making one, before my opinion is formed. And then I never like the thing because I never had the opportunity to decide whether I liked it. Once I am mentally adjusted I am a little more able to cope with other people's responses. I didn't tell anyone I was hopeful of a relationship with Mr Peggy until we actually got together. I probably won't discuss the names we are thinking of for baby until baby is born and we have decided on a name. It helps me keep ownership of the decision and feel as though I belong to the new version of things.

But because any change has been such a big mental shift, it can still make me feel unsettled when people comment on a change, because it highlights in my head that it has occurred and even when the change is a positive one it still carries a quantity of discomfort in its newness. To have people comment on a change in me makes me feel vulnerable. Perhaps because it points out the me-ness in the change - I have made a change based on a personal decision or preference, other people will see part of my personality and then be able to judge me on that. 

So sometimes I don't make changes. Often I have no desire to make changes - sameness is very happy to many autistic people. If I do make a change sometimes I don't tell anyone about it, or I hide it. The final line of defence is to head off or disarm the worst of the discomfort by getting in there before anyone can comment on it. Tell everyone about it, make a joke about it, out it before someone else can, before it's out of your control. You still have to deal with all the problems I explained before about people knowing the thing, but at least their finding out was under your control.

Changes happen when you are pregnant. For quite a while you can hide them. I told people before it became unavoidable so that it was in my control. But you can't control when people start seeing or commenting on your bump. In pregnancy it is suddenly not only acceptable but lovely and wonderful to talk about your body size and shape and CHANGES that are happening. But I am still adjusting to those changes and I don't have the luxury like when I'm going to dye my hair, of not telling anyone until I am ready to. They can say what they want when they want, and they aren't being horrible, they are excited just like I am (OK, the only person who can be as excited as me is Mr Peggy, because it is after all our baby! But they are still excited.) and most people like to talk about that kind of thing. But change for me is always uncomfortable, even when it is the best kind of change in the world, like having a baby that we have waited so long for (and I know for sure I'm not the only one who isn't always happy as Larry about everything that happens during pregnancy).

The best thing you can do? Ask me factual questions, ask me how I'm coping with pregnancy or what the best and worst things are for me at the moment, tell me lovely stories (not horror stories!) about moments you treasure from pregnancy or your children's early lives. And with general changes, a comment that acknowledges the change but doesn't focus on it can be better for me than an outright, "Oooh, you've had a haircut!" (This is one reason that I haven't had a haircut for five years. I never have to have that conversation. What am I meant to say to that? "Um, yes, that is true, clearly."). Or maybe what I'm thinking is to be specific rather than general. I prefer a conversation that is about something... where the response to what you have said is logical not something I have to dream up. Maybe pick an aspect rather than commenting generally. "I like the colour," with no preamble, rather than "Have you had your hair done, ooh it really suits you." This is similar to how I don't like greetings and would rather just enter straight into a conversation. Or say it indirectly to someone else in my hearing: "I love Square Peggy's new hair!" When it comes to acknowledging change I think for me it links a lot with Exposure Anxiety, and the types of approaches that work well with this and PDA can be helpful - indirect communication. See this post and this one for a little on this, or Google. But perhaps these are points for a discussion on neurodiverse communication tendencies!

Basically, a long old ramble to say change is hard, acknowledging change is even harder, both of these make me feel unsafe and like the world is falling apart or bits of me are being stolen. You can help by asking questions that I know how to answer instead of making comments which can leave me feeling almost violated, and by being specific, or by talking indirectly about things.

Inclusion Makes ALL Lives Better.

Inclusion and accessibility are variably seen as either unnecessary expenditure, feel-good or philanthropic add-ons or important ways of levelling the playing field so that everybody can have meaningful participation in the things they want to do and the places they want to go. Depending on how much value you place on a life that is different from yours...

What is sadly overlooked in all of these views is the benefit that these adjustments also bring to the lives of people who don't have barriers in the way of accessing the opportunities they enjoy and/or need. I have seen occasional articles pointing this out: for a starting point you could try Joanna Grace's TEDx talk here (less than 15 minutes) or follow her on social media as she frequently explains much better than I can the myriad reasons why and how inclusion benefits everyone and not just those it is "aimed at." Or have a chat with me and I'll ramble at you about it!

I just felt like highlighting this again today after a soul-warming conversation I had earlier. I consider myself incredibly fortunate to have both a mental health team and midwife who are thoughtful and responsive and keen to work in an inclusive way, making adjustments to support me so that I receive care that is as beneficial to me as possible. I truly believe that this makes a daily difference to my wellbeing and ability to cope with and enjoy life. A current part of this work is creating a plan to reduce my anxiety and distress around accessing the hospital where I will likely be giving birth and may need to visit for antenatal care. I was discussing with a member of my mental health team some proposed steps in this antenatal plan including pre-recorded and live videos as preparation for brief non-appointment visits. 

And then came the conversation: "Well, wouldn't that [pre-recorded tour] be useful to a lot of other people as well?" "Couldn't they make it available to everybody?" and even better, "Is that something that would be useful for our service to do as well?" 

Yes, yes, and yes! Especially during these restricted times where visiting places is not routinely allowed and people are encouraged to stay at home unless there is very good reason not to, I can't think of many people who wouldn't find the availability of a photos or a video tour or street-view style navigation useful and anxiety-reducing. Birth can be a stressful and anxious time for many people with or without additional difficulties. And likewise pretty much everybody attending an unfamiliar mental health service is going to experience high levels of anxiety which may be slightly reduced by knowing what to expect visually when they arrive. Many venues began to create videos when they reopened after the first lockdown, to explain their covid-secure measures, and I have heard countless reports from friends who have found this really helpful. How fantastic to have professionals around who think one step beyond what you have said and constantly reflect on potential wider implications - the people who truly listen and seek proper understanding are the ones who make strides in care not just and not least for specific patients but also for wider best practice.

Adjustments and accommodations made to make care and environments more accessible and inclusive to me as an autistic person don't just benefit me. Because my needs are perhaps more overt in some areas than other people's and I am fairly aware of them, I can actually help make things better for the general population. With the help of the people around me who have great ideas and are willing to put in the extra work to support me, we can speed up improvements of systems that will help everyone and might otherwise have taken much longer to come to light.

Let's Get you Sitting on a Chair

or, Please Stop Inconveniencing People

Why on earth does it matter whether or not I sit on a chair?

The only conclusion I can come to is that it makes everybody else feel more comfortable (well, everybody who's boring and boxed up in the norms of society...). 

Is it an Autism?

Today the lovely people at the dentists' surgery got treated to a visit from my Oortizum (see Harry Thompson's page recently for this to make more sense - there's been a theme about identity-first language and everyone is joking about trying to find an Autism that is lurking somewhere, somehow existing outside of a person. Anyway, I digress.).

I was trying to process a change to my expectation by flapping gently with my Tangle and rocking back and forth before I left the surgery so I could let my brain accommodate the new information and work out what to do next. The receptionist asked if I was OK to come back next week. I replied "yes" and continued regulating. A few minutes later this loop repeated itself (in retrospect, she probably meant "please leave now" and also you are being strange and making me and the other patients uncomfortable, but this is not what she said). A few minutes later she repeated yet again and my brain went bang. "I keep telling you yes! It's fine, it's fine, it's all OK" as bits of my Tangle went flying all over the waiting room.

I managed to find a corner to crouch in to gather myself and let my brain and body do their thing. The poor bewildered lady went for backup. I had forgotten to wear my lanyard - a lesson I could probably learn from, although I'm not sure how much it would have helped in this situation!

I do not want your chair!

Thenceforth the main thing the noisy, fast-talking, incessant-questioning (but also very well-meaning) dentist seemed concerned about during my meltdown was that I sit on a chair. What?!

He didn't get the point that this wouldn't help from a) my ignoring the suggestion b) my getting more distressed as his insistence became stronger c) my shouting "no" at him and getting even more distressed (if you know me you will know I am NOT a shouty person!). 

Only once I had later had time to calm down (They got me a drink and left me alone and made a plan and told me what would happen. And brought me my bits of Tangle. So really they were very lovely!) and was able to talk again and he once more asked me to sit on a chair, gesturing to one across the room, did I ask permission to stay where I was (on the floor in the corner by a chair). He said I could stay in the corner but could I sit on the chair. I finally managed to express "it doesn't help to sit on a chair" and he gave it up as a bad job and agreed I could stay where I was.

Neither member of staff was unfriendly, they just didn't know what was happening and didn't know what to do. They were feeling a little desperate as I wasn't responding (again, to people who know me this would be a positive sign that I am working on recovery). I could tell this because the dentist urged me that I would have to answer his questions about how to proceed or he would have to send me away into the cold which he didn't want to do. He was at a loss as to what to do with this perplexing and unpredictable individual.

Ah look, the people are behaving

So perhaps my sitting on a chair would have made them feel better. I would look normal to them and anyone else coming in and they would feel they had helped me because normality was restored in their waiting room.

But the thing is, I wouldn't have been OK, or not as quickly. Crouching and being in a small space help me to feel safe, and this makes my recovery quicker and my stress levels after the incident lower, reducing the risk of further overwhelm a little.

For these people the sign that I was OK was sitting on a chair, and the sooner it happened the better. But for me that would not have been better. It would not have meant that I was feeling better. It would have meant that I was sitting on a chair. Less regulated than I could have been. But behaving normally. Putting on "normal" behaviour doesn't magically make the normal behaviour helpful to me, and it doesn't change the way my brain works. 

So next time you feel tempted to ask someone to change their behaviour, just check whom you are trying to benefit - do I want them to feel better or do I want them to make me feel better? If they're harming themselves or someone else then absolutely they may need to change. But maybe what they're doing is just what they need to be doing and maybe I could be OK with that. Maybe if I'm OK with it it will help others feel more comfortable around "unusual" behaviour, which will mean more people can be more themselves in more places more of the time. And when people know they can be accepted rather than making people scared or uncomfortable, they might just have a better life.

I searched for unusual behaviour on Google images and this was the result 😂

Also a note:

Double empathy problem. He didn't know that I knew they were trying to help. He kept reassuring me of this later on so it was obviously bothering him (and even rang the GP to get them to check on me - a whole other hilarious story!). I had no animosity towards them but they did not know this: my behaviour, distress and shouting were due to my brain not being able to deal with everything that it was being asked to, and nothing to do with my thoughts or feelings towards the people involved. I think perhaps people look at a meltdown or shutdown and interpret it as an emotion, and an emotion that is felt towards them because they are there or they were involved in the escalation of distress.

I rarely feel an actual emotion in these states: what I am feeling is overwhelm. Brain exploding because more is being asked of it than it can provide in that moment. It doesn't even have space for an emotion or an opinion on things - all that is in there is "too much" or "help" or "I can't cope" if I had to try and translate it into something.

I kept thanking them and apologising. I didn't know whether they knew I wasn't upset with them but just couldn't compute the change quickly enough. I didn't know if they knew that I knew they wanted to help.

So my communication was not understood by the people with me, and at times I did not understand theirs. An interaction between people of the same neurotype would likely have resulted in less confusion, a quicker de-escalation and less concern afterwards. 

Not a New Year post...

I feel compelled to rebel against the annual tide of introspection and personal reinvention.

Actually, as ever, I have been reflecting for quite a few weeks and after much ignoring of the prompt of the blog itch I am finally sitting down to scratch it. Nice image for you there. And also, this post won't go live for a couple of weeks so really, the precise day it happens to be today is pretty irrelevant as the sentiments are weeks old and the post weeks early!

This time last year. 

I took three photos on 31st December 2019. The first one reminds me that it was a Tuesday. It was taken at 7.11am. It tells me I was distressed. It tells me I was trying hard to use positive coping strategies. I don't remember on that occasion whether I won or not, but I'm glad I was trying. It tells me I had friends who cared - my projection light was a Christmas present from someone with a very big heart. The other two photos tell me that I went outside later that morning and I was present enough in the moment to stop, appreciate it, and take two photos of a view that I grew so closely connected to as I befriended it daily through the changing seasons. It brought me peace and solace in times of turmoil.

This time last year Tuesdays were the worst day of the week, baked potatoes were described by estimating the age of the baby's head they equalled, the word chain had a meaning incomprehensible to 99% of the population and you might find a yoghurt just about anywhere. One day you're helping someone who's so scared they don't know how to live, the next they're under your desk with you helping you through your own distress at the wrongness of the world. And then you're all in hysterics because someone burst a sensory ball in group therapy. On Christmas Day I visited my family for a few hours and then returned to my new 24/7 job.

2020 was a funny old year. Funny for everyone, but I like to think it was especially funny for me. The first four and a half months of it I spent in a funny old place. A place I hated and loved. A place where I felt safe and terrified. A place where I learnt to be me and learnt how to live. I formed deep friendships with people I love dearly and found understanding and acceptance (largely). I faced my biggest fears and did things I thought impossible. There were days of horror and days of hope. Many were a pretty strong mixture of the two.

Along came our friend covid and my learning to re-enter the real world had to be put on hold as we locked our doors and were confined to the company of our fellow patients and staff. Weeks on end without so much as setting eyes on my husband. Yet more people to hug than anyone else in the country, so we remembered to be grateful where we could. 

In May I landed back in the world, disorientated, overwhelmed, sad and scared. Surrounded by fabulous Peggy husbands (OK, just the one), Peggy friends, Peggy family and Professional Peggies, I survived those first few months. I grew plants, I said goodbye to my Grandad, I celebrated a birthday and an anniversary. I found joy and balance in returning part-time to work, moving my body, being outside (the fields and river of our village took the place of the tended gardens in bring me peace) and reconnecting with the bits of my old life that I wanted back. I practised helping people to help me. I fought daily with the things my brain told me, losing a little, winning a little, sometimes more scared of recovery, sometimes more scared of not recovering. I scared myself again then determined to work harder.

And then, out walking on Sunday 15th November, six months to the day since my discharge, I began to wonder. The next morning my thoughts were confirmed. So now...

This year.

This year there is a little person, just four centimetres long, growing inside me. Not everything has changed - thoughts, emotions and urges require dealing with throughout every day, just like last year. And my friends, family and support team are still rallying round me, if in different proportions and at different distances.

But now I am living in my own house with my own Mr Peggy, going to my job that I love. I can get up at whatever time I want (or need!), I can go where I want to when I want to, I have skills and tools that I can use to help me navigate life in a world designed for people with brains different from mine. I still have to manage distress, memories, meltdowns and shutdowns, but I live my life in a generally more manageable way.

I have no need to reinvent myself because it's a new year. I fully intend on trying my best to continue what I have been doing. Living in a way that I can sustain (mask less, only take on a manageable amount, ask for help when I need it etc), using my support networks and getting back on the bandwagon more quickly and staying on it for longer every time. Trying to be kind to myself when I am not coping and make the most of it when I am.

I am thankful for.

In the funny old year there has been much darkness and difficulty and pain. But there has also been a tremendous amount that I am thankful for.

I have friends brought to their knees by this pandemic and friends who have had a wonderful year with much to be thankful for. I think especially of friends gained over the last year who fight so hard every day, some currently anticipating admission and the long slog ahead, some nearing discharge, and many at home, riding the waves and working for freedom and life. It's not a club you'd choose to sign up for, but I am immeasurably grateful to have met the people I have done over the last 14 months.

I am thankful that I am well enough to be at home and living my life, truly participating in it rather than enduring it as it flows away.

I am thankful that I am well enough to be growing a baby. We didn't know if or when this would be possible.

I am thankful for the way pregnancy makes me love Mr Peggy more every day, whom I can't wait to see being a Daddy. 

I am thankful for the way he looks after me when I'm not feeling well, knows my mind more and more every day and shows me in perfect ways how much he loves me.

I am thankful now to be able to accept and appreciate his help - a year ago I would have been very troubled by needing him to do things for me! 

I am thankful to be in a job that I love, with colleagues I love, and to have been able to work all the way through this pandemic - the routine is enormously helpful for me.

I am thankful for my family and friends near and far. You bring me so much joy and support and you are a big important part of my life.

I am thankful for the professional help I have received, inpatient and outpatient. I realise how rare it is to get all the help you need for as long as you need it. I don't think I know anyone else who has this. I truly believe it makes the difference between sustained healing and just about managing or ending up back in cycles of illness. Just observing how so many of my friends have been failed in different ways brings a lot of pain, and I want to make it clear that it is sadly uncommon to be able to get all the help you need from the NHS. I also know that I can be sad and angry about this AND grateful that I have had what I have needed. Previously I would have felt guilty and that I should not be getting what I do get, but now I know that this doesn't have to be how it works. I can be sad for others and thankful for myself.

I am thankful to live in a place where countryside walks are within five minutes from my house on foot, and where I drive through countryside wherever I am going.

I am thankful to be able to walk and drive and dance.

I am thankful to have a house we can afford (just about!), that we can heat, that has space for a baby.

I am thankful to have been given life and hope.

Care

The other day I read this fantastic article about nurturing nose and face wiping. Oooh, it really got me thinking. If you ever in the run of your day find yourself wiping someone else's nose, you should read this article. If you don't, you could read it anyway - it's never a bad thing to broaden our awareness of different life experiences, and you never know when you might find yourself in a situation where the insight and understanding you gain could be useful. An aging parent or friend, a grandchild, niece or nephew, or even your own child, spouse, brother or sister can find themselves in need of physical care at any time, long term or temporarily.

The article is full of quick, easy practical bullet points to consider, yet it relays the true essence of care with brief explanations of why each aspect is important.

It is all about increasing the wellbeing of the person being cared for by supporting their understanding and anticipation of what is happening, valuing their personal preferences (eg. amount of pressure, type of movement, smells or lack of them) and autonomy, promoting their dignity, privacy, comfort and physical wellbeing. 

I keep wanting to copy and paste bits but then it's all so good I wouldn't want to miss any out! So just go and read it!

But it also got me reflecting more widely on care. Everybody will at some point in their life find themselves in a position of caring, whether this be in employment or personal life. We generally find ourselves there because we do care for that person. Because we want to make a difference and support somebody's wellbeing in whatever ways we can. 

We are also almost certain to require care at some point. We all required it as babies and children and to lesser or greater extents will be cared for throughout our lives by those closest to us or by professionals.

Can you think of any moments when someone's care has really made a difference? It's easy to pay attention to times when we have been failed or let down, but what was it in the times when you felt cared for that made the difference?

One moment I will forever remember is when I opened my eyes a slit as a particularly bad panic attack was beginning to ease, to see the support worker catching my streaming snot and saliva with a big wad of tissue. That image sticks with me. No disgust, no revulsion, no big deal, no expecting to be thanked or that I was even aware of that particular action. Just two people being with me, facilitating me to recover in the best way for me: waiting until I was ready, using minimal language, taking care of my physical needs when I couldn't and wasn't aware of them, maintaining my dignity as far as possible.

I'd love to hear of any moments of care that have stuck with you, big or tiny.

How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!