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.