Always Be Prepared

I never take my clothes off inside out, because that means I would have to turn them the right way again, either when putting in the wash, hanging up to dry, putting away or getting out to wear. That would be annoying. It's much easier to just take them off the right way.

My routines and preferences and "correct" ways of doing things generally have an important reason behind them, and I have usually formed them through experience in order to avoid anything from minor inconvenience to high distress. I prefer to wash up as I go along when cooking so there's not a big pile waiting later when we want to relax. I make sure I have everything I want to hand before I start feeding Baby Peggy. I write emails before appointments so we know what to talk about. I always put things in the same places so I don't have to look for them - I know where everything is. I always have my rucksack with me with a gazillion things I occasionally or frequently need (blanket, notebook, headphones, diary etc etc etc). 

I wasn't quite sure what to title this post or what my main point is, but I want to write something about being prepared, or being informed, or being in control.

I invest a lot of energy on being prepared in life and thinking ahead to anticipate problems and head them off before they happen. This often looks to others like being pessimistic, wasting time and energy (I don't always do things the quickest way; I do them the best way for me that makes them easier in the end) and being fussy, awkward, controlling, paranoid or pedantic.

One of my major concerns right from early pregnancy was how I would cope with being in the hospital due to the intense emotions I have surrounding the memories of my past experiences there.

I could have tried for a home birth but found the uncertainty around this difficult to manage. If staffing was short on the day or if I had complications I would have had to go in anyway, and then I would have had the additional stresses of it being a change to plan and of not having worked on accessing the hospital. And there was no way of avoiding a small number of visits antenatally - any visits to triage for concerns about movements had to be made there and although they were very accommodating about trying to get my scans at the local hospital one or two had to be in the hospital where I have the main issues. 

So I decided early on that I needed to tackle the issue rather than trying to avoid it and we embarked on a Grand Preparation Scheme.

In the end I was advised to give birth in hospital for medical reasons and had to be induced a week early, so I was glad of this decision.

Good old Stan

There were visits to the maternity unit, starting out very small with just what I could manage, with my familiar midwife. She used different routes to avoid the worst places and this was accommodated even when we had to make unplanned visits without anyone who knew me (after some very clumsy explaining by me, translated by good old Mr Peggy!). I had a summary of my needs and difficulties and how best to support me on the front of my notes, and worked on communication cards with my OT. We planned what distress tolerance techniques I could use and I practised them on visits (fidget toys, my weighted sloth Stanley, acknowledging my thoughts and feelings in speech or writing or just internally, acting opposite to the unhelpful urges that arise when trying to cope, distraction activities such as reading and puzzle books). I wrote down all the questions and worries I had (not all at once but as they came to me!) and took them to whomever could help so I knew exactly what to expect. People knew to ask me what I had written down for them, or to discuss whatever I had said in my pre-appointment email. I watched every episode of One Born Every Minute to give me an idea of scenarios that might come up or things that might trigger me in the delivery room. I carefully didn't make any rigid birth plans in case of need to change them and instead researched all options and practised telling myself that whatever I need is OK. I prepared myself to pay conscious attention to what I need and make it non-negotiable to communicate this to those around me. I thought about whether I needed to take my own soap that smells OK, prepared myself for the food situation in hospital and packed familiar snacks, and packed other familiar calming items such as my bedside sensory light.

Very brief explanation of
a safety behaviour

To some people all this extensive preparation might seem over the top or like a safety behaviour. Perhaps it is. But do you know what? For me it worked. I didn't need everything I had prepared but I had prepared everything I needed. Nothing took me by surprise, I had all the coping strategies I required, and I was able to communicate my needs. Neurotic safety behaviour that perpetuates anxiety or sensible anticipation and solving of problems? Perhaps a bit of both.

Either way, compared to my first hospital stay where I had no idea what was happening, felt very overwhelmed and ended up with a lot of unprocessed experiences that still trouble me now, this time was a world apart. I used past experience to inform me about what would be difficult and what would help, and it was worth every minute. My birth was a positive one and I have none of the overwhelming and complicated emotions attached to my memories this time. I am very grateful to everybody who supported me throughout the preparation process.

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.

Many Neurodivergent Returns of the Day!

I'm a bit cross about my birthday this year. I feel it has misfallen rather, at the end of a week where I've somewhat overdone it socially, and am dealing with some fairly hefty hammers to my mental health.

I often feel that there is a great expectation to enjoy one's birthday: a pressure to celebrate and be happy (hence "many happy returns!") and have a Special Day. I feel like if I don't have a lovely day I will be disappointing people, because they have expressed their wishes and hopes that I will have fun, or have a wonderful day etc, and I have not demonstrated this to be the case. I know this isn't what they intend - they are kindly expressing their hope that the day treats me well, and I do the same to others because I hope their birthday does treat them well. But somehow it makes me feel sad or guilty if I can't fulfil those wishes!

The points I want to make are twofold, I think.

One: "happiness" isn't everything, and neither can it be manufactured or conjured up on a whim. 

Please don't start CBT-ing me here or telling me how to create my own happiness. I know we can do things to shift our emotions but that isn't my point right now! What I'm trying to say is that why should emotions be in a heirarchy with happiness at the top? Are "good" emotions somehow more valuable than "bad" ones? Am I a better person if I'm always happy? 

Admittedly it is more pleasant to feel positive emotions, and for most people it is easier to be around somebody happy than somebody sad or angry (perhaps hence the general pressure to be happy, because then the other person doesn't feel obliged to feel bad that you're feeling bad/try and help you/invest time in being with you in your sadness where it is less pleasant). 

But that doesn't actually mean that it is objectively better to be happy all the time or at a specific time. I generally end up feeling better, calmer and more at peace if I acknowledge whichever emotion I happen to be feeling at a time and honour whatever message it is bringing me. I often experience problems if I ignore my emotions or mask them or pretend that I'm feeling something I'm not.

Two: happiness looks different and is brought by different things for everybody, especially neurodivergent people.

Here's a sky to gaze at from yesterday

Today I will likely not be displaying any heightened emotion. Firstly, autistic people tend to display their emotions differently from non-autistic people, but also I generally feel at my best when I am not experiencing any heightened level of emotion, positive or negative. Many people enjoy extreme happiness or excitement, but these create disturbance in my physical and neurological systems which is unsettling and "stressful" in a body-brain way rather than a cognitive way (if I am very happy or excited they are good things but still create strain on my systems and require recovery, rather than replenishing me). So top of my emotional heirarchy would probably be "calm" or "peaceful" or "content."

When I am feeling at my absolute best, it is not astounding to see, nor necessarily apparent to others, but I am enjoying a state of non-happening, non-stress, just being how I am in that moment. This is why I like time to enjoy something that brings me happiness: I gaze at the birthday candles until they have nearly burnt away, drinking in the moment of glow and stillness, or I linger by the glorious sunset or majestic waves for longer than typical, bathing in every sensory aspect of the calm and awe it inspires. Stillness and calmness are when I feel at my true "happiest."

Visiting my Geordie Peggy
and tea at THE BEST Thai
Restaurant. And yes, we're
both autistic so we always
have the same thing! A
wonderful day, but exhasuting.

Today I stayed at home and watched my church service on YouTube. I have done too much people this week and it has been getting more and more imperative by the hour that I do something to sort this out. The peopling I have done has been so enjoyable, but I went overboard (being sociable on two consecutive days), being out of practice at scheduling because of lockdown! My brain is also trying to deal with some nasty stuff mental health-wise and that takes huge chunks out of my coping resources and notches my mood down and "negative" emotions up.

So today I was church at home, and that was just right. We managed to move this afternoon's appointment to yesterday. Basically I have managed to cancel nearly everything I would have been doing today. Mr Peggy's work day got extended slightly. I am wearing joggers and fuzzy socks. I came downstairs to balloons and pressies but no people. I have been alone for five hours and will be for two more. I have finished my jigsaw puzzle and now I'm writing a blog post. Next I will clean out the guinea pigs because hopefully then it will be Sunday (not going to church has made a confusing rift in my routine!). 

This would be a disaster of a birthday for many people, but for me it has worked out perfectly. Last night I was frustrated and upset that I was feeling so completely rubbish and that it was going to be my birthday just at that time so I wouldn't enjoy it properly. But now, I am decompressing. I am feeling better. I am looking forward to Mr Peggy coming home and to spending the evening with him, opening my presents and cards and quietly watching some unemotional TV. I have had a morning of stillness and I am several notches calmer than I was: the space I made for myself means that in spite of the week behind me, I am enjoying my birthday. It might not be the birthday you would want and it might not look how you expect a birthday to look, but my happy is not made the same way as your happy; my stress is not made the same way as your stress, and my most enjoyable day is not made the same way as yours. 

So no need to feel sad for me or judge the way I choose to spend my special day (generally, I prefer same to special, or my special in small doses amongst plenty of same!) - this is the one day of the year that I can jolly well do what I like, and this is what I liked today!

Birthday Bunting Banner 😍

Working from Home

I have never worked from home before. My job is not one you can do from home: it involves being with people in person. You cannot provide personal care for somebody who is 15 miles away. Video interaction is not accessible to the people I work with (and it is difficult for me!). Pretty much zero of my daily work activities can be undertaken remotely. 

And yet I find myself embarking on twelve weeks of working from home. Because of the government's pandemic guidance and my employer's duty of care to me I am no longer allowed to attend work in person other than to collect and drop off work. My duties completely change overnight. My work environment changes. My daily routine and weekly routine change. The amount of interaction I have with adults changes. 

Working three days a week was the perfect balance of people and isolation, productivity and relaxation, structure and freedom. I had learnt to manage my energy balance and mental wellbeing well enough to stay well and function in a way I am satisfied with more of the time than not (and using the support I have available), and to enjoy my life, on the whole. 

And now everything changes. Again. I know everything changes when baby comes anyway, but that is different: I am busy, I have a focus, things will naturally change and find their own rhythm, and I have had nine months to prepare for it. 

This change is not optional. I was in denial about it for a long time after the possibility was introduced to me, and naively thought I might be able to fight it, but it turned out to be one of those "choices" a bit like the "if I don't make this 'choice' they're going to section me" ones. So I didn't pick it, I am not enormously prepared for it, it is a big unknown, and despite the fact that I will still be working it involves a lot of time at home, which is well documented as being a stumbling block for my mental health. 

On an autistic level the change to routine and to nature of my work is problematic. I like my life to be in boxes, and different ways of spending my time are contextualised by environment so to have work and home in the same place without a transition time is difficult. Work is a large part of the rhythm of my week and helps me mark the passage of time. There will be more time in my day to fill as I won't be travelling. I struggle to transition between activities when I'm at home (autistic inertia) so I can get stuck doing one thing which turns out not to always be great for my body or mind. 

On a general human being level the change to interaction levels is problematic. I need people and I need not people. At the moment that balance works pretty well. My need for people is fulfilled by work and Mr Peggy and the odd one-to-one socialisation but I will lose out on the best kind of interaction for me: where I am parallel with others: engaged in the same task and just interacting between ourselves as and when we choose.

On a more personal mental health level the associations of not being at work are problematic.

Almost exactly this time last year I came back to live at home and due to covid thwarting my original plan to return to work before coming home, I had a month not working before I began a very phased return. The time of year is already difficult with memories (see my previous post), and being at home feels like a replication of that time. Driving home after my last day of school brought memories of the drive home from hospital, and of previous ends of year that were full of sadness and anxiety. 

I also worry that the combination of being of work, not feeling great and waiting for a change to come will take me back to September 2019 when I was home from work unwell. I wouldn't have thought of this except that my first trimester felt very much like that indeed, and I was still working then. I struggled immensely with those mental effects of the first 13 weeks of pregnancy (although it took me a while to pinpoint exactly what it was!) so it does now occur to me that I am again entering a similar situation.

I am trying hard to focus on the positives of being at home. I can be flexible with my time and arrange my support throughout the week to help me cope. I can conserve my energy for things that I want to do - as the exhaustion of being in the third trimester increases I won't have to save all my energy for the physical demands of my job and I will likely be able to work for longer. As lockdown eases I will be able to get out and about more, to meet with friends, to join my in person yoga classes and gain interaction in those ways (although this also brings some unease because it doesn't feel right to be out enjoying myself in person when I'm not allowed to work in person). I will have more time and energy for preparing for baby as my travel times will be gained back. I have a great support network who will do everything they can to help me cope with this time and maximise its benefits.

Let's see what happens.

Still Remembering

I need to write something, but I don't know what.

I feel funny at the moment. I think I feel sad. As well as overwhelmed and excited and discombobulated by all the change in life right now, of course.

I have spoken before about memories and how reminders of situations and events from the last couple of years can cause me difficulty. While I was in hospital and for about the first six months afterwards these memories would often come suddenly and bring incredibly intense emotions that I found difficult to cope with and that lingered with me throughout the day. 

Over the last six months I have felt they have relented a little in their frequency and intensity. I am less often triggered beyond my ability to concentrate on the present moment. The intense effects of a memory last less long. I can talk about some things that I couldn't talk about before without becoming completely overwhelmed. 

And yet. 

They haunt me still. The barely-staved-off panic attacks when I have to go to the general hospital. The lingering emotion all day reminding me of the dream I had last night. It's an emotion I still can't place a year on, and the dream hangover ignites further thoughts and memories to make it worse. The same emotion hits me like a wall when things are too similar to previous days, trapping me in my house because I'm too scared of the feelings I'll have if I go outside in the spring sunshine. The colder dull weather this week has been a relief. My camera reel was full of spring photos and blooming life last year but this year there are three. 

The tears I push away and avoid spring up on me less often, but they are all the more vicious because I've hidden from them.

It doesn't go away, and it doesn't become less confusing. There are times when the triggers are further apart, or avoidable or I can box things up and squash them away while I do what I need to do. But this stuff seems to be with me to stay and I don't even know what it is. I think if I'm going to have any luck in managing it I need to understand it, and I need some help with that because I clearly haven't got far on my own in a year! I need someone to help me unpack the boxes, look at the confusing things and work out what to do with them. And maybe I'm ready for that now, which I wasn't a year ago.