April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

The Shoes of Despair!

And here's another one - thank you executive dysfunction! I've waffled about executive function before so I won't explain it now, just a little reminder of some of the applications or implications.

The hole is so big you
can see my sock

I need to buy a new pair of shoes. This has been the state of affairs for several weeks, and that's a conservative estimate based on when I obtained the refund for the faulty pair. It's actually more like several months, depending on which precise stage of decay you choose to name "out of circulation," which is a little embarrassing. (The shoes are still in circulation because I have not replaced them...)

The thing is, I buy the same shoes for everyday wear. They usually last two to three years. It was hard enough this time round when I bought them in October, the previous pair having finally worn through to having holes in the soles. They don't sell the precise same ones any more so I ordered the three closest approximations to choose from. None were quite right, obviously, so I ended up with the two I couldn't decide between (why hello again executive dysfunction, lovely to see you!). Each had benefits and drawbacks and was better in a different context. I radically accepted this 😉

BUT THEN! Within a few short months one of the pairs was already dead, even by my standards. Noooo! I ignored the fact for a while, eventually I became conscious of appearing disreputable and it takes a while before I care about that!

Finally I caved and faced the truth. So I emailed the company asking for a refund so I could buy a new pair. Excellent speedy response, no quibbles, thank you Mountain Warehouse.

Less comfy but
more presentable

But, um, that was weeks ago and I'm still wearing the old ones, with a cold toe trying not to tread in puddles on wet days. I had a rough couple of weeks in March so once I surfaced from those I told myself it was only a week until the holidays and I would do it then. It is the last night of the holidays. I haven't done it. I have begun an online search several times and become overwhelmed and suddenly I am going to be faced with work again and have only the shoes I want to keep presentable or the shoes that will probably get me sacked (either for presentation or for health and safety - no open-toed shoes 🤣). Oh dear.

But buying shoes is too much brain. I cannot buy the same for they may die just as quickly. I cannot repeat the pair I have, for I need a pair with the complementary features that are better in different environments. I can't see any other similar affordable ones. Maybe I should branch out and try a completely different type of shoe, but WHERE TO START??? And so I don't. I write blog posts about it instead...

If you see me barefoot you know why 😉

Anxiety

Most autistic people live with frequent to constant anxiety at some level. For some it is relatively mild and/or manageable; for others, incapacitating.

I'm not sure whether any part of it is intrinsic to being autistic, but certainly the lion's share (not sure why the lion gets a share of autistic anxiety 🤔) is caused by living in a world where your brain type is a minority and most environments, systems and social networks are designed for a type of brain that's different from yours.

My anxiety varies wildly depending on all kinds of factors. Some I've figured out, like tiredness, sensory overload and social overload and others I haven't so it appears random. Sometimes I can go days without experiencing more than mild, ignorable anxiety. I can do and enjoy the activities I have chosen and the jobs I need to do - sometimes even things that aren't imminently urgent. At other times I know that the anxiety is more. I have to work at managing it, using different skills to keep calm and either acting the opposite and not allowing it to shrink or interrupt my life, or listening to what it is telling me and scaling things back as needed. And then sometimes it seems unmanageable. I can't do the things I want or need to do, I have meltdowns, shutdowns or panic attacks, and it is hard to recover.

Today I haven't had any of the big moments (yet!), but anxiety meant I did not speak to the person I've been trying to meet for several weeks who was finally in the same place as me. It meant I spent my half hour car journey doing breathing exercises and mindfulness to try and stay calm and avoid spiralling. It meant I didn't look for the person who's selling a balance bike I'd like for Little Peggy. It meant I struggled to concentrate on the talk because I kept having to retrieve my thoughts from anxiety-land. It meant I didn't chat to the person I wanted to catch up with about their recent visits to families with disabled children in Malawi, and whether there's any way I could help or links we could build with my work. It meant I nearly forgot to use my Tangle instead of harmful stims. It meant I had to talk myself into eating my meals. It meant noise was more noisy and stress was more stressy. It meant I didn't tell Mr Peggy how anxious I was until about the fourth invitation, at which point I still said very little about it. In fact talking at all is much more effort than normal - so I've been masking by talking anyway, which eats further into my spoon supplies (amusing metaphorical image...).

And probably a thousand other things that I didn't notice or can't be bothered to list.

Some of today's anxiety was inevitable with things that are coming up in my week. Some could have been avoided or reduced by better communication. It is compounded by memories popping up as usual and bringing difficult emotions.

So yeah. Anxiety. If you know any kind of ND (neurodivergent person - autistic, ADHD, dyslexic, dyspraxic etc) they probably live with anxiety. It might not look the same every day or in every situation: that doesn't mean they're making it up or that they're "acting out," being dramatic or manipulative. Their resources just aren't stretching so far right now. Please be kind. If you want to help, get to know the person and what helps to reduce their anxiety. Just asking is likely to automatically reduce anxiety around you even if there's nothing else we ask - many of my lovely Peggies have done this and it makes me feel more relaxed when they're around. Thanks people!

Communication failure strikes again

My PIP review form came this week. That's not what this post is about, but it does mean that at least this little incident served some purpose in reminding me that I am not a Round Peg. I often find tasks like this difficult because I think that I get on pretty well in the grand scheme of things and shouldn't be asking for or receiving special treatment like adjustments at work or benefits from the government.

But last week it turned out that not only am I incapable of sitting on a chair,* but I am not the world's finest communicator. 

I shall wait for you all to retrieve your lower jaws from the floor where they have fallen in shock...

I tried to go home sick from work on Wednesday. This is already notable, in all fairness. I am terrible at knowing when I should or shouldn't be at work: I do not understand the Line (except the one where you've been sick) and how or when to draw it. It is too vague; it is a fuzz, not a line. I had got as far as consider that maybe I should probably draw it. I could not bring myself to call in sick on teacher strike day. I would go in and give it my best shot, get through the day and arrange after school if I still felt bad that I wouldn't come in on Thursday (that is easier because it is planned and the decision is spaced away from the action and I know what to expect on the day).

After I got to work we were informed that our class would be closed and told where we each would be covering. Once the informer had left the room I realised I had only found out about the morning (processing time...). Located Person With Information. Asked what I would be doing in the afternoon. They said it hadn't been settled yet and I would find out later. Thought very quickly. Replied "OK, maybe if I'm not desperately needed I could go home: I'm really not very well but I didn't feel I could call in sick on teacher strike day."

The Person With Information saw me a little later and expressed sympathy, saying it was a strange day for us all and I could wait in my class until the pupils arrived if that helped. I agreed and mentioned that my symptoms (fever, intense headache and incredibly sore throat) were not helping either.

When I eventually went to ask what was happening in the afternoon, having already taken my lunch break because I was unable to find People With Information, I was told I was going to cover someone who was ill and needed to go home. I mentioned for a final time that I was also ill and went off as instructed.

They didn't need me for five minutes and I needed to fetch my coat and as soon as I left the room I found myself in tears. I had a little cry, washed my face and continued the day. I would like to say with grace and professionalism but I definitely whinged!!! At least I have enough self confidence to whinge about it - in the past I would have been so upset, and ashamed that I'd asked for something I shouldn't have, that I wouldn't have uttered another word about it to anyone.

The next day I went to school. And the next.

Now I bluffed it out and joked about how I was clearly well enough to be there because they hadn't sent me home, but genuinely, even though I knew maybe I should be at home, I also believed that. Remember I'm not good at making that call, and not confident in those decisions once made, so if someone says or acts in a ways that suggests I have got it wrong, then I assume they must be right.

By Friday evening I was taking antibiotics for Strep A throat and ear infection. That I have probably now spread to half my class.

The two problems were a: I wasn't confident in how ill I was or whether that was too ill to be at work, and after many years I still don't have a reliable way to make that decision and b: the communication regarding my tentative decision failed. Although I have managed once or twice in the past, I still did not have a reliable way of communicating that decision.

The thing is, at the time I only knew about one of those problems and so I believed I was wrong and should be at work because it had been judged to be so. The second problem only came out on the Friday when I asked to keep my phone on me while I waited for a doctor call-back. This was a different Person With Information and one who had only been present at my third attempt to convey that I was unwell (my attempts became clumsier each time, and I didn't reiterate the bit about going home because I had already said it so they already knew I wanted to and I didn't want to seem demanding as I have been told plenty of times in that setting and others that just because I ask for something doesn't mean someone is obliged to give it. A fact that I am only too well aware of).

Their understanding of the situation was very different from mine. They had not received that message that I had requested to go home, and assumed that I had not made it clearly enough to be understood. I got the impression that it was very much my fault that this had happened. I still don't know whether this was indeed entirely my fault or perhaps a little of the old double empathy. It is in the past and ultimately now doesn't matter.

When told that it is my responsibility to say I need to go home rather than work's to send me, I asked what I should do when I have made that decision and have asked and haven't been allowed. The Person seemed confused by this question and suggested the part about how I probably hadn't communicated clearly enough. But helpfully, they gave a script, so now at least I have a solution for problem b and I can't feel worried about it being too demanding because it is literally what I've been told to say. It's just very confusing when half the time you're told you shouldn't ask for things and then you're told you should!

So yes, the upshot is, I am not Round (for many other reasons than just this!!) and I will try not to feel guilty filling in my PIP review. It's not my decision whether they award it, anyway - I will just give them the information.

*that's a joke - one day recently I managed to fall off one in two different ways in the space of five minutes, causing much hilarity to myself and others

Echolalia

So my previous post has made me finally write this one! I've been mulling over another of those "autism comorbidities*" for a few weeks - one that I've not thought about much before: echolalia.

Now I found this great article that pretty much says everything I wanted to say about it, so I would suggest you read that instead.

But if you can't be bothered I will summarise:

Echolalia is basically repeating words or phrases, either immediately or later. It used to be described as "meaninglessly" or "pointlessly" but this is SO WRONG. People do it for many reasons: to help process what they've heard, to communicate a response, to perform socially (ie. they know a response is required but don't know what), because it's fun or stimmy, to communicate a new message, to practise speech sounds, to make links and categorise new information (ok, that's similar to the first one I said - processing).

Actually it's not just an "autism" thing - people quoting films in everyday conversations are technically doing it - but autistic people can tend to do it a lot more, or a higher percentage of their communication might consist of borrowed phrases. In fact it's amazing how much you can say with recycled dialogue and some communicators are ingenious at getting a message across either what they have. I always remember Joanna Grace telling of a lad who said everything he needed to through quotes from Thomas the Tank Engine: "But wait, we've left the refreshment lady behind!" was the way he reminded the teachers of a quiet member of the class who nearly got left behind one day!

I do it more than I had realised - like with the surprising item in the bagging area title to my previous post. I think I do it mostly for fun - it is a little like word play to me - and also because my brain makes links, connections and patterns. It likes to join things together looking for patterns, so often if I say something that is also in a book or song I will extend my sentence by finishing the quote, for example Little Peggy might be wandering off up the road as he does, and I will say "where are you going?" but then I finish with "to, little brown mouse" from the Gruffalo. Sometimes I carry on further through the story! If I say "here I am" I usually follow it up with "send me", a quote from Isaiah in the Bible that I've heard a few talks on.

Maybe it's partly completeness for me. If my brain has made the link to something else it wants to complete that thing or at least acknowledge the link in order to let go of it and move on. Other times it's playful. And perhaps if I am not in the mood to communicate directly it is easier to use someone else's words as they feel less personal or vulnerable. At any rate I think it's less effort and more fun to use preloved phrases - I don't have to put words together, I can be a bit artistic, and in a weird way I know it's "right" because it's already been said by someone else, so I can't get it wrong and be weird. Which of course is nonsense because it can make you sound a lot more weird! And writing that I realise I have a whole lot of words and phrases that I have pilfered from many many real life people over the years - some I just like, but I think the theory may be "they are accepted and respected; if I use their words I will be too - I will belong and won't get it wrong.

So yes, read the article and get interested - the more I think about it the more fascinated I get!

*What a terrible term! Basically just a Thing, that quite often coincides with being autistic, but can happen without being autistic and not all autistic people do it.

Surprising item in the bagging area! And what to do about it

What a great opportunity to practise coping skills...

A surprise day. I'll refrain from my oft-used phrase of "it's all wrong" because it's not wrong that I'm at home looking after my poorly child. 

But it does raise a number of issues of emotion, thought, logistics and executive function. And the "wrong" feeling autistic people get when things aren't how they're supposed to be.

The day doesn't have a plan. Well it did, but I'll get to that later. How do we pass an unexpected day? Home days don't usually start this early - we got up and ready as though it were a work day, because it was supposed to be. What do I do with the time until the day starts? And what do we do after that - we have no activities planned. What is he well enough for? Can I take him out if the Calpol perks him up eventually or is it too risky in case he's carrying scarlet fever? I have the wrong food - do I eat work food at home or do I waste the work food? I'm wearing work clothes - do I stay in them because it's Wednesday or get changed because I'm at home?

What do we do tomorrow if he's still too ill to go to childcare? I've taken a dependent care leave day today but they are very limited and only granted at the discretion of my employer - not an entitlement. How can I judge by 3pm today how he is going to be tomorrow?! Will he be well enough to stay with Daddy and how bad would I feel about Mr Peggy having to rearrange his day?

And then the emotions: frustration because I know the staffing in our class has been terrible this week so I was looking forward to going in and being a real help. Instead I'm adding to the problem (bit of guilt too, although im trying not to guilt myself). And more frustration and disappointment because I was super pleased with the fact that I hadn't needed any time off this half term. I thought I had finally made it through a complete half term but now we've fallen at the last hurdle. I'm glad it wasn't a sick day for me because at least I still haven't needed time off sick, but the pleasing completeness and sense of achievement and things being "back to normal" and feeling reliable are gone.

And then the worry for the future - what if I'm just not reliable any more? What if I need too much time off - I'm already partying with HR. What if Little Peggy is more ill another time and I should have saved the time for then?

He's finally perked up enough to leave my knee for two minutes, twice (he is back on again now), so of course I am questioning whether I really needed to stay home with him (he was up most of the night screaming for significant portions of it, has a temperature and has been in contact with scarlet fever). But that's the decision Mr Peggy and I made so really it doesn't matter whether it was right or wrong - that's just how it is now.

So now I need to work out what the day is. How do I deal with the discombobulation, the emotions and the thoughts? 

Number one: I don't use any harmful coping strategies.

Number two: I take one step at a time. Right now what needs to happen?

Number three: I radically accept not having a plan. The day will depend on what the little one needs and that might change. Not having a plan is better than needing to unhave a plan! I didn't start the day with plans for home so there's nothing I need to achieve other than looking after him (and myself)

Number four: I take a compassionate approach. I listen to what I am thinking and feeling - it's ok that those thoughts and feelings are there. I go easy on myself and remind myself I don't need to "fix" all this right now. One step at a time is better. Time, space, moving away from black and whites, gently feel your way and remind yourself you will get through it and the world is not ending. Process what's happening eg by writing (this!) and think about what will genuinely be useful to you.

Number five: start thinking about options. Not a "plan" because I'll need to be flexible, but possibilities. Maybe we'll have an opportunity to do the Christmas cards together that I haven't found time for yet. Maybe I can finish parcelling up the parcels. Maybe we can still collect the marketplace presents I was going to get after school, as a "get out of the house without contaminating anyone or freezing the poorly child" option. Maybe we'll just be bundled up on the sofa with the TV on. None of these are binding but they might help me decide what to do with the time rather than getting stuck and stagnating and all feeling even worse.

Number six: what can I do for me and my body, brain and nervous system to make things better? Just because it's a difficult circumstance and I've made things more difficult for others doesnt mean it will help anybody if I feel terrible all day (in my head, it's not what's meant to happen so it's Bad, and if I try and feel less bad about it that makes me Badder, or something...). Easing the "suffering" doesn't negate the difficulty for myself or others. Right now I can't make it any better for the others but if I ease my own system I am in a better place to help when I am back, and to stop any negative spiral in myself. I will care for poorly one better if I am in a better place. So I can use my CFT resources of soothing rhythm breathing, safe place and compassionate companion. I can write to process. I can make sure we do get outside at some point, even if it's just for five minutes. I can parcel the parcels to feel I've done something. Maybe I might buy myself something - there's something I've been deliberating on for a few weeks. Or I might read a bit of a book or listen to some music. At any rate I'll look for a bit of joy. 

The boy is curled up sleeping on me (probably the only way he'll rest today - hence no nook or jigsaws!). He's definitely not OK, naps at 10am are unheard of, but the day will be. The world will keep on turning and tomorrow will be a new day; we'll deal with it when it comes!

Fine Mesh Part II: Sensory

Aside from language, I of course receive sensory information through a fine mesh. In fact perhaps this should have been Part I because the sensory world is more fundamental, but as a linguistic being my brain approached it through the linguistic lens first.

In the sensory plane my differentiations are again narrower and slight variation from normal or my expectation results in having to recategorise and my brain alerting me to "Error!". I think the narrowness of filter also means I can perceive sensory input as many, many pieces of data that I must process, rather than a whole or a few items. Or maybe the mesh is narrow because I perceive the input in that way?!

When perceiving through fine mesh, the simple data "I am hearing a sound and seeing a movement" may become "I am hearing another sound as well as the multitude of background noises, and the new sound is made up of differing pitches/timbres/volumes etc. I am also seeing a thousand new pictures a minute as something in my field of vision moves." My brain is trying to work out what all those pictures and sounds add up to and how that aligns with previous experiences to see whether I need to respond in any way.

It's no wonder I end up overwhelmed sometimes - even though I may not be consciously processing each item my brain is working overtime for me. A messy room becomes not just one messy room but 3264 (see "wild exaggeration" below!) items that need tidying.

It is said that autistic people tend to focus on the finer details rather than seeing the whole picture and it's hardly surprising if what we are perceiving is a whole lot of input that makes up the picture, rather than simply the picture! This goes for the metaphorical picture as well - any scenario in life such as a social situation or an event unfolding as well as a literal piece of art.

Perhaps prosopagnosia (face-blindness) is also related here. I am only very mildly affected by this, but maybe if I am perceiving many pieces of information it is harder to put them together to recognise one face. If there is a minor difference or lack of context the data don't all match so the connection is not made. And yet in compensating to over-recognise... maybe there is one feature that is similar and so in knowing that I need to make connections I assimilate the new face to one I know.

I've just realised that this chimes with something Temple Grandin speaks about in her book Thinking in Pictures that I was given for my birthday, and also Donna Williams in Somebody Somewhere. They both speak about fragmented perception and I have only just twigged that they are speaking of a similar (though in Donna Williams' case, much more extreme) idea. To literally see/hear/sense the fragments must be a very different way of being.

Another aspect of sensory input being finely sifted for me is similar to what I described in the previous post about linguistic accuracy. I may see things (or hear, smell, taste, feel etc) in a more precise or attuned way, so I might register a display at school not being straight or symmetrical more quickly than others and be more bothered by it. A speck of dirt on a dish I've washed is detected by my fine mesh and recategorised as "not clean". Perhaps that's why I love asymmetrical designs: errors don't glare in the same way, and an intentional "error" is fun because you meant it (cf. puns, wild exaggeration of numbers, language play like spoonerisms or swapping vowels, mismatched socks etc...). 

I tend to eat one food per forkful because too many flavours and textures at once are overwhelming and I don't taste or feel any of them - in fact it blew my mind when I realised as a grown up that some people would put meat and vegetables on their fork together! It had just never occurred to me to do that! I can enjoy them and taste them better one at a time, so I do. In a sauce, where the flavours should blend together sometimes I can't process them all like that and one gets picked on by my brain and that is all I can taste (usually salt but sometimes a herb or other spice). I only add salt to bland foods such as chips for this reason - then I am not missing out some other flavour by tasting the salt. Ma Peggy and Peggy Toes (one of Little Peggy's Aunties) have extremely fine meshes for taste - Ma Peggy couldn't drink milk from a particular supermarket for several years because she couldn't stand the flavour and Peggy Toes can detect a change in a familiar recipe in an instant, asking what has been done differently.

I don't have perfect pitch but my pitching is closer than average. A slight error in tuning is bothersome. Some CD/mp3 players have a function where the music can be slowed down or sped up and this is used at times in dance classes to match the music to the speed required for an exercise. I could always hear when this had been left on accidentally, even if just by one notch, and often nobody noticed unless I commented (when they would usually discount my tentative comment - which was actually a desperate plea to put me out of my misery! - unless they checked, when they always found it to be so!). Even when it had been set deliberately it caused me constant discomfort to hear the distortion even if slight. My fine mesh alerted me perpetually to the slight difference from normality: "This is wrong".

These are just some examples - I could probably find them for other senses, these are just those that pop to mind first.

As with my need for precision in language, these issues if verbalised can get me labelled as obnoxious, pedantic, fussy, a pain, so again I often try to mask by not raising them. Of course that makes my comments inconsistent and perhaps thus less believable and even more inviting of the judgmental labels. And the mesh or my tolerance for variation/error does change with my stress levels which means sometimes I notice less or am able to mask more.

Well, I've wandered far from the original beginnings of my musings but it's been very interesting! Some of it is just ideas or typing as I think so it might not make much sense or I might change my mind about it in future, but I'd be interested to hear your thoughts and experiences.

Do you have fine meshes or course meshes, or a variety? Do you like your mesh style? Are there other types of meshes I've not thought of beyond linguistic and sensory? 

For me, despite the extra brainspace it takes up in perceiving, understanding and interacting with the world and the anxiety caused by my mesh being different from a lot of people's, the world is tremendously beautiful through my detailed and nuanced lenses and I wouldn't want it any other way. Precision is pleasing, details are delightful and accuracy is absolutely blooming lovely.

Edited to add rambling thoughts:

Could another lens be social? What would a social fine mesh be? Narrowly defined roles, behaviour, phrases, patterns in communication. That is what autistic people try and do in order to understand non-autistic communication and "get it right". But of course there is no fine mesh and we are inevitably lacking in some way. So we wish for a fine mesh because we are fine-mesh people, but the non-autistic social world has no fine mesh.

Fine Mesh Part I: Language

I experience the world through a finer mesh than average. Perhaps that is a large part of what being autistic means to me.

Mr Peggy and I often observe that my definitions for things are narrower than his - colours, words, categories and subcategories of object. For me the window of variation before something becomes a different thing is small. It is also important to me that things are correctly identified. If the wrong (for me) word is used it is not accurate. Inaccuracy sets off an alert of "Error! This cannot exist! It is not true!" in my brain which is incredibly difficult to quiet without being resolved. The fine mesh makes this happen a lot more often.

So I tend to be very precise with language. Pedantic is a word that has been applied throughout my life - probably accurate ;) 

My need for accuracy is partly related to truth - as explained above if a "wrong" word is used it registers as untrue, untruth being close to intolerable. And of course my default outlook being black-and-white doesn't help! But also, if things are not accurate and true as expected, the chaos of the world becomes even more overwhelming. I am confused because I don't understand what people are talking about, or it takes me longer to work out. In conversation this just looks like I'm being an awkward pedant when in reality I'm working overtime to keep up. And to really top off the world's chaos, if I can't depend on one thing being true - sometimes the very foundation of my understanding of the world (language) - what can I depend on? If words and concepts can change their meaning what else can? What is stable and dependable? How can I share an understanding with someone else if we are working on different foundations? Everything swims and the constants that I function on sink beneath my feet. I mean, imagine if gravity just stopped being true, right?! It wouldn't only be my world that became topsy-turvy!

Even on a simple day to day level, imagine you visit a different part of the country and ask for a bun. In the North you'll get cake; in the South, bread. (Hey, even bread and cake can be a contentious divide - banana cake or banana bread?!) Surprising, even funny, as a one off, but imagine everything being like that. It would be completely incomprehensible, exhausting, terrifying. You'd have no idea what to expect. And knowing what to expect is hugely important to everybody, but especially to autistic people precisely for the reasons I'm talking about here: because the world is so chaotic and our base anxiety levels are so high, and because a slightly different alternative may be completely intolerable on a sensory level too (such as a slightly different texture or colour) - to be suddenly and unexpectedly faced with an intolerable experience instead of what you imagined/expected can be highly distressing.

As a side note, one way I consciously mask every day is to not correct external inaccuracies. I correct myself frequently when speaking (and when writing - it's why I use so many parentheses and go back and edit "intolerable" to "close to intolerable"), not because I am holding myself to some high standard or criticising myself, but because it is more natural than allowing a possible misunderstanding to remain. It is easier and less effort to refine for accuracy than to contain those impulses .

A lot of corrections to other people's speech or to written material do escape because I don't catch them quickly enough, and the masking doesn't always work very well because it turns out my face usually doesn't succeed in wearing the mask even if I restrain myself from comment. I come across as overly critical but I am actually spending a lot of energy on inhibiting reflexes to make everyone else more comfortable! In fact if I correct you a lot it means I feel more comfortable in your presence to mask less!! I wish it were easier for people to know that it's not personal, neither is it judgmental (people think I think they're stupid if I "correct" them, which ain't true!) and I'm not being obnoxious. I'm refiltering what they've said so that it fits through my fine mesh and I can process it better, nothing more, nothing less.

More to come on fine mesh through a sensory lens.

Where's the Feeling?

For somebody who is quite sensory-aware, naturally mindful and pays attention to what their body is telling them, I am remarkably useless when somebody asks "what did it feel like in your body?"

My new therapist ask this question a lot - it is an important part of the EMDR we will be doing - and I find it really difficult to answer! I can be bad at identifying emotions, though I am improving at times, but sometimes I'm even worse at this, which surprises me.

Is it because I don't notice it? Is it because I can't identify it? Is it because I can't remember it afterwards? Is it because I find it difficult to communicate it verbally?

During my difficult week I have been trying to pay good attention to where and how I feel different emotions and responses in my body, particularly the past couple of days since I saw her.

With some emotions it has definitely been a case of not thinking to pay attention at the time - when the old amygdala's partying I tend not to be paying attention to my precise inner sensations. At other times I have been able to notice some clues, for example my shoulders being tense and raised up, a sick feeling in my stomach (usually worry), fidgety hands or hands that want to hold something, a mouth that wants to smile.

Emotions have even been mapped in the body with thermal imaging- picture from here.

But that's pretty much all - I spent a good twenty minutes yesterday thinking "I feel calm, content, relaxed and happy, what does it feel like?" and all I could come up with was slightly smiley and it's easy to move (if that even counts!!). Does my body just not feel feelings in a very physical way or am I spectacularly bad at figuring it out?! 

Any hints or tips or do you have the same experience?

A quick Internet search for "anger in my body" or "where do I feel things in my body" bring up a variety of resources to highlight body cues for emotions - I'm going to keep paying attention and see if I can work out whether it's my awareness or my body that is making it more tricky to figure out - or maybe both. And I'll be writing it down to make sure we don't come a cropper on the "difficult to communicate it verbally" thing. Interoception differences and alexithymia are both known to correlate with autistic neurology so I probably shouldn't be surprised by this whole business!

Skillz and Tooolz

Skills I have used this week, in no particular order. Some of them are old faithfuls, some are new trials or discoveries, and some I have intentionally resurrected as the usefulness of going back to things that have helped in the past has been highlighted to me. Sadly a few are not currently available to me, like ballet, massage, and probably others. There are undoubtedly some I've missed, but a good few here to give you some ideas. If you want more information on any of them just give me a shout in the comments or by direct message.

Trying different intense "push" movements instead of destructive physical actions

Writing (CBT and blogging and general brain dumping)

Going in my nook

Old skills such as emailing updates before sessions to help me talk or make sure I stick to my plans

Talking to people and verbalising my head contents

Not giving space to thoughts/urges that are untrue and unhelpful, even if they feel like they are true and helpful

Reminding myself of why those things aren't true and reasons why I do life differently now

Allowing amygdala to party when it really needs to, but not in a destructive way

Sensory walks - touching and smelling the conifer leaves, tiptoeing along the kerb etc

Tai chi

Paying attention to what my body is telling me and how it tells me that (eg. I needed to wear my noise-cancelling headphones the whole time I was in town, not just in noisy shops. I was holding the ends of my sleeves and putting my Tangle in my mouth - seeking tactile and proprioceptive input. My stomach had a sicky feeling of anxiety. I wanted my hood up at the beginning of my sensory walk - wanting to be enclosed and reduce sensory input. My shoulders were up high and tense.)

Achieving small tasks such as cooking a meal, booking an appointment or sweeping the kitchen floor

Stretching/moving my body

Sleeping

Noticing how many things I have actually coped with and why things are difficult right now

Putting on upbeat music

Soothing rhythm breathing

Safe/calm/happy place visualisation (! Bet you never thought you'd hear me say that!) and tapping

Playing games on my phone

Jigsaw puzzle

Colouring

Reading

Playing mindfully with Baby Peggy's toys (and Baby Peggy of course!)

Cuddles with Baby Peggy

Message a friend

Fidget tools eg. Tangle

How To Tell When You're Overwhelmed (or at least, when I am...)

I was so overwhelmed that it took me half an hour to work out that that was why I didn't feel quite as all right as I had been doing.

Clues that I will use for reference in future:

• Thinking a million things at once, yet completely unable to answer even fairly simple questions or focus on one specific thought or problem
• Or it feeling like the Brian is completely empty
• Not able to work out how you feel: "I thought I was OK but now I feel like I might not be" but unable to elaborate. Eventually after rambling aloud intermittently for a while I concluded "Maybe the feeling is anxiety. Or maybe it's not, but I think it could be."
• A sense of impending Bad Things (eg. meltdowns/shutdowns/increased urges and likelihood of acting on them)
• I took off my hoody after realising it was very hot in the room, and shortly afterwards noticed I was really quite visually overwhelmed by my stripy T-shirt!
• After about half an hour I realised my body wanted to cry

Other clues I have noticed in the past include becoming irritable, becoming increasingly stressed by mess in the house, feeling more sensitive to noise, struggling to make decisions, finding change even more difficult than usual, wanting things "just so," not being able to let inaccuracies go (and not in a humorous way like usual), pacing or fiddling more than usual. The list could probably be infinite!

How do you notice signs of overwhelm?

Interestingly, I noticed that after I had the thought "my body wants to cry," my hands became still and my gaze focused on the shape of my Tangle. My thoughts stopped racing although I still found it hard to think. It was almost as though through my continued rambling I had reached the thing which was salient at that time and my mind and body came to rest, dwelling on that realisation.

Now crying is not something I enjoy, and the second half hour was spent whinging about how I didn't want to cry, along with a lot of sense from the person who is paid to talk sense to me. What might happen if I did or didn't cry, etc. etc..

In the end, once outside my body took me for a wander and I let it do its thing (for once I had no other considerations as Baby Peggy had another hour left with his Peggy-sitter). And now this afternoon I feel much better. The sense of impending Bad Things has gone, and so has the ?anxiety. I still feel exhausted but that's not surprising as I have had a busy and fairly stressful few days even though many of the things were positive and enjoyable (hence not realising that I was overwhelmed, though you'd think I'd know by now). And I've been awake since 6am of course! Time to try and go a bit gently and remind myself to watch the old occupational balance a bit. A new routine in two weeks will help, if I can construct it with the right balance.

Relationship is Key to Communication

Checking for something on my GP record I came across the report from my recent psychiatrist review. I'm not normally under a psychiatrist but everyone under mental health services is offered a psychiatrist review after having a baby. This means the psychiatrist and I hadn't met before and didn't know each other other than them having read a brief summary of my medical notes.

At the time I was aware there had been some gaps in our communication but over all I had a neutral feeling about the experience - it happened and it wasn't particularly significant. 

When I read the report I realised the size of the discrepancy between what was received and my experience.

The more I think about it the more I realise how much less than optimal that appointment was. It wasn't anybody's fault, but it made what could have been a useful checkpoint into a box-ticking exercise.

I am aware that I wasn't doing my best communication on the day. My brain function was a bit compromised and my emotions were offline so I didn't even think of some of the things I could have expressed (like how the matter of what therapy I may or may not be getting has been going on for about a year and is driving me mad). 

Some things I might have wanted to say two weeks previously didn't seem important because they had faded as my priorities changed and my perspective skewed. Other things I tried to communicate but obviously didn't quite succeed at.

If I lived a few miles up the road I would have known the psychiatrist. I have practised communicating with that one. I have developed ways to tell her the most difficult of things and get round the troublesome bits of my brain. She is familiar with my idiosyncratic style of communication. And there's simply the fact that she knows me and would have been able to tell just by how I was presenting that I wasn't doing great.

I know that my situation is perhaps unusual in that I don't know my local psychiatrist and I do know the next-door one, but the point I'm getting at is the importance of relationship in communication. Especially for people whose communication is not "typical" or who appear to communicate fine but actually might not.

It wasn't anybody's fault - I could have communicated better but wasn't really in a state to do so, and the psychiatrist could have helped me more but she didn't know me so she didn't know there was anything to help with or how to help. 

But reading the report showed me that even what I thought I was communicating or tried to communicate hadn't reached its target effectively and that the gap between us was bigger than I had thought. Even things I had corrected on were still written wrongly. The group I mentioned in my previous post had a session on effective communication last week and one of the features highlighted was relationship. I've noticed it before in my post about continuity of care and here it pops up again. I think the frequency with which it appears means it's important. Not always possible, but important.

Two Years

As I lie in bed trying to sleep, knowing I will be wakened in a few hours, I can't help my mind taking me back to another night two years ago today. I've kept busy all day but there's nothing between me and the memories now.

The hard mattress and yucky polyester sheets. The knowledge that I would be wakened in four hours, my lights turned on, my blood pressure, pulse, sats and temperature taken and my finger pricked. The terror of realising each and every time I regained consciousness that I was in this unknown place and I had to face the thing I was most scared of four times a day. Traumatic as the general hospital was, I had come to understand it and therefore feel some level of safety but now everything was new and overwhelming all over again. 

That morning as I stepped over the threshold with fear and hope, I had taken some of the most important steps towards my new life. Of course it's not actually clear cut like that, there is no line between old life and new life, I have not "arrived" anywhere and am very much just continuing to take steps every day, in varying directions.

But there are some things that were left at that door that I am endlessly grateful to be rid of. They had no place in my life and I never want them back. Others I have picked up to help me since, and many many more I still carry, for better or for worse.

It's always a difficult time of year for me: my brain works by making links and finding patterns, and so it is great at highlighting similarities and differences between experiences while it tries to organise and categorise everything in order to understand life and inform itself on what might happen next and how to deal with it.

And so it reminds me in my thoughts about events that happened on certain days (like today), and it reminds me in my body of experiences I sensed or emotions I felt (like the leaves turning orange and falling from the trees, or the cold morning air or a particular timbre of beeping). The two often become entangled or the one prompts the other as well. The trouble is, my poor old Brian can't decide whether to categorise these things as good or bad (they were of course a mixture) and how they should inform my future actions. I don't know what I feel about them and my brain is so intent on trying to make a logical map from them that they just keep swilling around because they can't be filed.

Life is very different now from how it was two years ago. I've been trying to write this post for two weeks - this is the end of about six weeks of annual date-specific memories - and could never find quite the right words. My life is better. I am more independent. I am happier. I have more freedom. I share more about my wellbeing with Mr Peggy. I have better support. I am much more able to ask for help when I need it. I have better coping strategies. I live a more authentic life. I have Baby Peggy. 

That time was probably the hardest in my life. I certainly had most of the most traumatic single moments of my life so far (and hopefully ever!) during that time. My stress levels were permanently so high that meltdowns were routine. But I also found hope. I met some of my closest friends. I reclaimed parts of my life I thought were lost. I found out a bit of who I am when I'm not trying to hide (because there was nowhere to hide). I let people in and I let people help. It hurt and it helped. And so I don't know how I feel about it and I don't know how to write about it. 

A therapist I saw recently helped me make a little sense when I explained that I wasn't even sure whether it was even trauma I was dealing with: because the events, experiences and feelings all happened in one time span and space that definitely had some traumatic events, it all gets lumped together by my brain, and so even parts that I wouldn't think should be traumatic still inspire some of those feelings. The emotional response is so complex because all of the different emotions are related to things that happened at that time, and so whenever I am reminded of any part of it, I just get a big ball of unidentified emotional mash. (She didn't quite phrase it like that!) I wonder if it can also work the other way - that because some wonderful things came from it I can feel mistakenly positive about the bad bits.

So I don't know how I feel about it. And still the memories swill. Hopefully one day they'll just trickle by harmlessly. 

Until then? Just keep swimming...

And be grateful for what I have right now, which is more than I would have dared to hope for through my tears on the hard mattress in the middle of the night.

The sensory delights and trials of parenting a newborn

There is a fundamental change when you first become a new parent. Your house becomes a different kind of house, and you become a different kind of person. I live in a House with Baby Toys, a House Where you Might Find a (clean) Nappy on the Living Room Floor. A House with Baby Clothes on the Line. I am a Person with a Car Seat in Their Car, a Person who uses the Lift Because of the Pram, A Person Who is Late Because the Baby Needed Feeding. 

I like being a Person With Baby Feet On Their Leg!

Of course not everything changes (See my previous post! Although things are very different now from when I wrote that), but the shift is pretty major and there is a lot of re-categorisation work for the brain to do as it tries to make sense of what life is now.

Along with this shift come many new or changed sensory experiences. These must be different for everybody and must affect everybody differently but I think I would have found it interesting to read some examples before I gave birth. In fact I'd still be interested to read others' experiences now! And different experiences of the sensory aspects of pregnancy for that matter.

A few of the notable sensory specialities of having a new baby for me:

Smell experiences. 

You'll be able to think of plenty of smells associated with babies, I'm sure. But I have a super strong awareness of some of the less obvious ones. I smell different. I don't know if it's the hormones or just from being so close to each other, but my body smell has changed. In the early days I definitely smelt like him; now it could be either or both. 

There is also a pervasive aroma of dried milk and our mixed sweats. Thankfully I actually like this smell, possibly because I'm all full of hormones, or possibly because as a bodily smell it is easier to process and therefore calming as an early developmental experience.

(Note, on checking and finishing this post six weeks after I started it, so just about three months into Baby Peggy, these experiences are much less intense. I guess he smells much less like a newborn, we are all a bit better at feeding so a bit less dried milk and skin to skin, and it isn't so hot so we aren't as sweaty!!)

Touch experiences.

One of the biggest difficulties I encountered and potential barriers to me breastfeeding was the wetness. I discovered I really hate being wet, and even worse, wet fabric. If makes me uncomfortable and miserable and irritable. There is a lot of wetness involved in feeding a baby. Leaking milk from the side you're not using, fountains when baby gets overwhelmed and comes off mid-let-down, dribbles when the latch isn't good, and of course spitting up after feeds. It might seem disproportionate but the constant getting wet really affected my mood, to the extent that even though feeding was going well I questioned whether I could continue. Thankfully I was able to problem-solve with a little help and with a never-ending supply of muslins, and milk collection shells and reusable breast pads I can stay happily dry when feeding and in between. What a relief!

Tummy to tummy 💗

Some of the most rewarding sensory aspects of having a baby are tactile for me. Having Baby Peggy's weight and warmth on me is super calming: worlds beyond a weighted blanket or even a squeeze vest I think. Having him in the sling when I do stressful things helps keep me calm. But the real trump card is the moments when I find us tummy to tummy. There is something primal, visceral, soul-filling, about that particular sensation that just transcends the words I have to describe it with! 

Those are the main ones which were huge for me but potential other considerations:

Sound experiences.

Babies cry. Some more than others, but all babies cry a certain amount. The sound is designed to be hard to tolerate. This can make it extra problematic for people who are particularly sensitive to certain sounds. Or perhaps some people with strong auditory sensitivities have found ways to cope (certain types of earplugs I have heard of, and I'm sure there may be other things that help) and so don't find it much worse than other sounds. Or perhaps the processing is different and so the emotion and the sound may be less strong (or indeed stronger) in some people.

Luckily we like his favourite
singing hedgehog too!

For me another one to note is changes to the soundscape of the house. Someone will undoubtedly give you noisy toys. We have a baby gym that makes noises but thankfully they are noises I don't mind hearing repeatedly (some I would struggle to cope with so we may be "losing" a lot of batteries if we acquire too many electronic toys in future!), but it can still be surprising if the baby is not on the mat and one of us sets hedgehog off unexpectedly!

The sounds of his shuffling and snuffling at night are also new, the washing machine is on more often, I tend to listen to music more because he likes it (and the types of music he likes, especially in the car!). When he was tiny he made a funny sound at the end of a yawn that inexplicably infuriated me for a moment every time, but then it also used to sound like we were on a pirate ship at night as he snored, which was actually quite soothing and very cute.

And of course his cooing and early vocalisation practice. Which melts my heart every time. And with that grin...

I've had to rethink my
whole laundry-hanging
system!

Visual experiences.

As I mentioned earlier, the house looks different. Baby toys, baby clothes, nappy buckets, baby bath, baby sleeping places (we even had to move our bed slightly to accommodate his bedside crib, which is not only a visual adjustment but can affect the proprioceptive and other senses as you navigate the room!). General baby paraphernalia all over the place! I know of one friend who very slowly made these adjustments throughout her pregnancy - perhaps a helpful tip.

But also, you get to look at a really cute baby.

Taste experiences.

I didn't think there was anything to write here, but as I come to check over and finish this post a few weeks on, I have had to trial a dairy free diet for his digestion, so am having to adjust to new tastes as well! Thankfully there is a lot available these days so it has been easier than I feared. NB cashew milk is the closest I've found to cow's so far, oat is nice too, coconut yoghurts are not nice but coconut ice cream is (well, Aldi's chocolate brownie ice cream, anyway...). I don't reckon vegan cheese would be worth trying...

Other senses.

Getting back on these
bad boys!

My proprioceptive and vestibular senses are a bit sad since having a baby as they become rather neglected when permanently glued to another being who can't control the movement of their body. I use these two senses to keep myself regulated and feeling well, so I really notice it when I haven't been able to stretch or move in ways that feel good for a while. When my body isn't happy, I'm less happy. So recently, now that I've become aware of this and now that Baby Peggy is sleeping and playing a little more independently at times, I try and prioritise moving my body even if just for a few minutes each time he is somewhere that's not me. It really helps. 

Sometimes you can
sneak a bit of vestibular
input even with a baby...

Interoception-wise, I have to try and be extra conscious because I am not super-sensitive in this area. I often realise fairly late on that I need the toilet, or am thirsty or too hot, so now I try and intentionally attend to all these needs before I sit down to feed - go to the toilet, make sure I have a drink nearby (although I think breastfeeding actually makes me more conscious of thirst) and am dressed right for the temperature. Thankfully on the evenings and weekends Mr Peggy is great at refilling my water whenever it is empty, bringing me the food I need, putting my fuzzy socks on for me etc!

So there are my thoughts on the sensory aspects of having a baby. Please let me know your experiences and thoughts - I'd be really interested!

Continuity of Care: Inclusive Midwifery

I'd like to rave for a few minutes and sing the praises of my midwifery service. 

By a fortunate set of circumstances I ended up under a different service from the one that I should be under geographically. Because I am still registered with a GP in the city rather than the town near where I live (easier for me to access from work), I was assigned a midwife from the new pilot continuity of care team in our city. 

It has only been running a year and the hope is to expand this model of care across the city in future, returning to a more "Call the Midwife" type of scenario where the same small team of people look after women and their babies from the early days of pregnancy through the birth and the early days of baby's life. Each mother has a named midwife but there are opportunities to meet the other members of the team so that even if your midwife isn't in on the day you give birth you are likely to have somebody familiar come to the hospital or your home to support you. They have a weekly online Coffee and Chat where they cover all kinds of antenatal, birth and postnatal topics, signpost resources and facilitate getting to know other Mums and members of the team.

To begin with I was happy with the care and support I was receiving but I didn't completely realise how grateful I was until later in my pregnancy when I had appointments with people from outside the team (eg. my consultant) whom I had not got to know. 

It turns out I had struck gold with my midwife and her team. From the very first contact she listened to me and my needs, accommodating in every way possible and checking in regularly whether they were getting things right for me. She never failed to check whether I had any questions or worries written down and always asked verbally before we finished appointments too. She kept me on the caseload though I'm out of area because she recognised how important the continuity of care could be for me. Once she knew me a little she showed insight into what I might need and what might be difficult, taking care to communicate in ways that work for me.  She proactively liaised with my mental health team, making sure nothing fell through the cracks. She made sure I had regular in-person appointments at a slightly higher frequency than standard. She repeatedly reiterated to get in touch with any questions or concerns or to ask for help - so much so that I actually could do that if and when I needed to (something I tend to find difficult). She took me on visits to the hospital step by step and completely at my pace so that I could desensitise myself a bit to going there and so I could know what to expect. When I was in labour she stayed to personally take us from the induction room to labour ward and gave a really good handover to the midwife looking after us for the night, who after that also took great care and attention to meet my communication and physical needs. She continued this support after birth, taking nothing for granted, being clear with me and I with her, checking things out and making sure things were right for me. She always let me know who was on shift when, and introduced me personally to as many of the people I might come across as possible.

This approach made me feel safe and functional. It gave me confidence to voice my needs and worries and have these addressed. I never felt as though I were too much work, or awkward, or needy, or an inconvenience, and neither did I feel belittled or patronised despite the extra support I received; rather I felt respected and enabled in my journey towards parenthood. My pregnancy passed with as little drama as possible and with me feeling as stress-free as possible. My birth was a positive experience, despite being in the hospital. I carry no unprocessed difficulty from any of it - an increase in confidence and calmness if anything - and Baby Peggy and I are both as well or better physically and emotionally as we can expect to be.

The times I went in to see the consultant and the registrar without anybody I knew, I didn't really feel able to ask questions, I felt as though I might be judged and I did not feel safe or confident. This is nothing to do with the skill or manner of these professionals; simply that for me, the relationship built over time where I feel assured that I won't be misunderstood, is paramount to my effective engagement and therefore the outcomes of my care.

So thank you, continuity of care team and especially my wonderful named midwife, for your stellar example of best practice in patient-centred care. I hope to see continuity of care teams spread across the city and round the country.

I Need my People in the Right Place: Self Advocacy

Throughout my pregnancy I had fantastic support to navigate the changes and challenges I came across and to prepare me for the experience of giving birth in a hospital. We did a little work on what would happen post-birth, but not huge amounts because all I knew is that everything would be different, and you can't really prepare for something so unknown other than to be prepared for anything! 

Then just a couple of weeks before baby was due, I was told in passing that I would be having six weekly home visits once baby arrived. This is standard procedure to make sure that any support needed is given, and to monitor for signs of postpartum mental illness as the likelihood is much higher if you already have significant mental health issues.

This patch of trees is a
favourite place to regulate
 after stressful appointments

The trouble is, my care co-ordinator does not belong in my house. When I first had to access my support remotely it caused a lot of problems. I managed some of these by taking my calls on walks outside so I could have a transition between "home" and "with professionals." If I didn't do this it took me a long time to come down and regulate myself after appointments and any distress that I had experienced during the call remained with me in the house. For me, the act of leaving my house, going to the place where the professional belongs, doing the talking and then leaving that place, regulating (if stressed I will regulate by sitting or walking outside before I even get in the car) and then returning home in a "home" (relaxed/alone) state, is important. I need that transition to make distance and protect my own space so it can remain a place of low arousal.

Having people in my house who don't belong there is also just wrong. Wrong in an autistic way, which I can't explain to non-autistic people but seems to be understood when I talk about it with autistic people. Autistic "wrongness" is when something cannot be so. It is the same for things that are untrue: they become intolerable and I must do something to correct or acknowledge the wrongness and negate it. It's like it makes my brain explode, like when you come across a paradox. It is just not OK. I cannot tolerate its being.

These two factors (needing the transition and the wrong person in the wrong place) meant that I did NOT want my care co-ordinator coming to my house. My OT had to come for a home visit once, and it was wrong. I got through it but was very dysregulated afterwards, pacing up and down the house until I went for a walk to "reset." I did not want to experience this with a new baby, sleep deprivation, hormones etc to deal with on top. 

When my care co-ordinator first said what would be happening, not even considering that there might be an issue, I expressed my discomfort at the idea. I don't think I was very clear about just how much of a problem it would be and we had the conversation several more times, with me becoming more emphatic or clearer about my feelings each time. I was warned that if I refused there was the possibility that social services would get involved. When Baby Peggy had arrived, my care co asked to come round. I finally managed to say no. I wrote a message explaining why, and that I could cope with the OT coming instead - at least she has been in my house before. Thankfully, because of this and because I had been visited my the midwives and health visitor (they do belong in my house now - I found it difficult when they first came but we had practised it several times by that point) and I video call with one member of my team from my house, that was sufficient for me to be allowed to go to the CMHT building for the weekly appointments until the OT is back from annual leave to do the home visits. 

I understand that there is a duty of care to me and my child to make sure we are safe and well and that on a home visit it is much easier to assess how someone is coping at home. But I also strongly believe that I was right to advocate for myself and express that I was just not comfortable with this particular person visiting me at home. There is also a responsibility to adapt my care to my autistic needs and not act against my wellbeing. I am enormously glad of all the work done over the past couple of years on expressing my needs and asking for them to be met. I do not have to just go along with what someone else thinks is best. There is a way around it if I actually tell people.

A Perfectly Square Start to Parenting

When I was pregnant, I made sure to clear my diary for the first couple of weeks after baby was due. I was very aware that the first few weeks pass in a haze of feeding baby, changing baby and trying to catch a few minutes' sleep wherever possible. The general message from pretty much all directions was "You'll be so busy with baby and so exhausted, it will consume everything. After a couple to a few weeks you might feel up to starting to do a few things again."

This is not how it panned out for me. The reality was that my baby slept most of the time for the first week, and when he wasn't sleeping he was eating. After the initial couple of days of feeling more sore and more weak and wobbly and more exhausted than I could have imagined from the actual birth itself, and after the first relentless night which had to be survived in that state, the quiet of the following week quickly got to me. Once I'd recovered from the worst of the birth process itself and the sleep deprivation hadn't built up again, I didn't always feel like napping in the day even though I was exhausted at night. In the early days there were long spells where my baby was sleeping and I suddenly found myself at a loss. 

Because my body was still recovering I wasn't up to doing much physically but my brain wanted to be engaged and doing things. The trouble was, I hadn't been expecting that and somehow couldn't work out how to entertain myself. It was confusing!

Of course, once I realised what the problem was it made complete sense. I know that I thrive on routine and that although I need lots of down time, I start to struggle pretty quickly if I don't have one thing in my day to "do." It's usually best if that thing involves leaving the house. When I don't have a change of scenery or a focus to my day everything becomes a time-passing exercise and my mood and thoughts soon begin to deteriorate. I've done so much work on occupational balance over the past couple of years that I'm really not sure why it was a surprise that the same needs applied from one week to the next even with a baby in tow!

I suppose because having a baby is such a fundamental change to life. My life will literally never be the same as it was before (Neither in a positive or negative way, it is simply a fact that it is intrinsically different now. Although I have to say I think it's the best thing that could possibly have happened to me, but more on that another time!), and I fell into the natural assumption that because the change was so all-encompassing that meant that nothing would be the same. I prepared myself to have no expectations for how things would be, to know there would be challenges and to just take each day as it would come, and learn to build a new normal with my family. 

In truth, this is a helpful approach and many things do change, but what I had perhaps overlooked (despite one or two insightful people suggesting it to me!) is that I am still the same person underneath it all. I still need a variety of occupations throughout the day. I still need familiar routines. I still carry many of the same anxieties, thoughts, memories and emotions. This is all OK. It doesn't mean I'm some kind of substandard mother because I'm not completely enclosed in a baby haze. It means I am authentically myself as a parent, which is absolutely the best way I can be for my own wellbeing, for my child to learn how to be and accept himself and therefore promote his wellbeing, and for Mr Peggy to have a less stressed wife and open communication and a good gauge of how I am doing and what I need as well as my being able to meet his needs better because I am doing well.

I know I'm an OK Mum. I know the feeling of contentment and completeness when I cuddle my baby or when he stops crying at the sound of my voice, and I know the rush of love and awe when I catch sight of him after an hour of not seeing him. I am hugely thankful for this, being at an increased risk of perinatal mental health problems due to my history. For a few days I questioned myself because I differed from my expectations and my perception of how parenthood "should" begin, but not all brains are the same, and so I once again adjust my prejudices to accept who and how I am, knowing that listening to myself and honouring what's right for me, as long as it isn't at odds with what's right for my family, is the very best way I can parent.

Best buys from the last year

If you know me you'll know I'm not big on having "things" and buying stuff or spending money unless I need to or it's something I'm going to really enjoy (like a holiday!). But here are things that I have bought or received over the last year that have repaid me infinitely for my investments. All except the first one under £10 or £20 but genuinely life-changing.

Bose noise cancelling headphones. Definitely my biggest investment but totally worth it. My sister very kindly lent me hers while I was in the general hospital and actually I didn't use them too much there. Maybe because I didn't need them much, as I was originally going to write, being in a side room so having a door I could close. But probably more because I didn't realise I needed them. I didn't realise what a difference they could make. I had some normal in-ear headphones I used at times when I wanted to listen to something without closing my door so I thought that was fine - it was all I had ever known. But when some particular noises on the specialist unit became too much I tried out the noise cancelling headphones properly. I never looked back! The sound quality is fantastic and the noise cancelling reduces or eliminates a lot of background noise, particularly low-pitched hums eg. fridge/freezers in supermarkets, traffic noise. They make it more possible for me to use the telephone because at least I can actually hear the person on the other end, and they mean that I have varying degrees of removal from the ambient sound-world. If I play music loudly enough I can't hear my surroundings, or if I just use the noise cancelling I can hear my surroundings but the over-all input is reduced enough to reduce my stress levels. Sometimes just putting them on without turning them on is enough to take the edge off things that are just a little too loud, such as amplified music or voices at church.

Onesie. I love my onesie so much and wear it most evenings. revolutionary dressing gown alternative for people who can't help flailing around. Made of thick jersey (think joggers/tracksuit/hoody material) it is cosy without being that yucky stuff that is sold as fleece these days. Actual fleece is good - the furry stuff NO! Especially if it's shiny. 

Stanley (gift). Stanley is my weighted sloth. He is full of beans literally. He can go in the microwave and be cosy warm if you can cope with the smell his beans make, but if not, he is good for sitting on the knee, accompanying you in the car if in need of some extra comfort, swinging around in therapy sessions to help you stay regulated enough to say what you need to say, and he's very calming if you sit him on your head. NB. It doesn't have to be a Sloth, that is just the animal chosen by Mr Peggy who bestowed this most excellent gift on me last Christmas (OK, so technically not my own best buy, but a best buy!).

A tin of black paint, with gifted variety of sensory lights, shelf and beanbag. This was all that was required to make my sensory nook, and that has been a complete gamechanger. Low stim environment where I can go any time I am at home, to destress, recharge, regulate and either maintain calm or tolerate distress. Also more recently acquired: dark tent so I can have a nook when we go away places, and blinds for the car windows in case I need a bit of down time when I'm out and about.

Love my nook!

Compression socks. These are new and technically designed for plantar fasciitis, but I use them in a sensory way. My feet get sad and dead when they are in shoes all day at work. They need some light sensory input so that I can be aware of them being part of me during the day and this helps to keep me regulated. Wearing them for about half the day under my socks is about right. Other days I use insoles with a big metatarsal support or trampoline park socks with the little anti-slip bobbles on the bottom.

Tangles. You'll rarely see me in public without one! They keep my hands awake and give low-level anxiety an outlet so that it doesn't build up as quickly. They also seem to be quite a good indicator of my stress levels for other people, who can be better able to tell how I am feeling by what I am doing with a Tangle than by any other verbal or non-verbal indicator...
I have a nice collection of other fidget toys/stim tools from spiky spring rings (love these!) to squeezy balls (!) to magic snake cubes and natural objects like stones. Just shout if you'd like any inspiration!