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.