I’m taking this week off from BBC work in order to free up energy for another transition. This week will hopefully be the first week where i spend more time looked after by paid support than by my friends.
This is a milestone for my transition to independence, or at least, my transition to autonomy.
One of the things i have learnt in the 10 months since my operation is that true "independent" living is probably not a useful goal for me. At least not for a while.
Instead, what i need is autonomy. The ability to make decisions about my life.
Being supported by my freinds means we loose autonomy from each other. They have to consider me when they plan stuff, and i can’t do things i want to do unless they are free to help me.
Thats not very sustainable. So we have been looking at other approaches.
In an ideal world, i would manage a new support network. Recruit carers, brief them and pay them etc etc. However, perhaps ironically, i have nowhere near the energy or ability to do that.
So instead, were working torwards a hybrid network. My friends will take a large part in my care by directing it. But they won’t be involved in day to day visits and support.
My friends don’t have the time to look after me every evening, but i can’t be left alone either. So before i got the keys to my flat we found a babysitter to look after me each evening.
Roughtly speaking, she supports me for about half the waking hours i spend in my flat.
The babysitter we found is brilliant, very experienced with autism and extremely helpful. She proved the model really well. She looks after me and takes her direction from my friends with my input. She doesn’t take direction straight from me (as most of the time i can’t give it anyway).
My evening routine is now the strongest in my life. So much so we use it to prepare key parts for the following day. I love my evening routine. It helps me to prepare for bed and sleep.
Up untill now, a friend has slept in my flat with me the nights i am there. This works really well for me (i sleep great!) but it’s extremely hard for them.
So, the next step in building my new support network has been to find someone else to spend the nights at my flat with me.
My friends found a local care agency, who in turn send a wonderful lady called Terri. She’s new to autism, but is super lovely and keen to learn.
We started the process of me getting use to Terri a few months ago. First with visits with freinds, and then time alone. In the last few weeks we started trying entire nights alone with Terri.
Truth be told, they haven’t gone very well. It’s taking time to find the right interaction model. Every other client Terri works with wants to keep all the control, however when she comes to look after me, i need her to take charge of the flat so i have a chance to recover. Its a very hard change for her to make.
To start with, we introduced a new bedtime routine for Terri to follow with me. However, in hindsight i think that was a bit ambitous. It’s to complex, with multiple vauge rules sets (eg, before bedtime, after bedtime) and not enough direction (she asks me to do things, not tells me. Extremely confusing for me)
Every visit so far has resulted in near panic attacks and multiday recoveries.
For this week, were making it simpler. Rather than have a bedtime routine for the time when Terri is with me, we are instead going to have all that done before she arrives.
This is far less change. In effect, the only change will be the name and shape of the person in the room next to me. I may even not notice unless something happens.
This is a bit like when i visit the Cafe or the hub. I dont need to know who is working that shift, just trust that someone who i know will be there if i need them.
Hopefully, this week will work better. I know i won’t sleep so well with Terri looking after me. However, in time it will hopefully work out. I’d love for the transition to be slower, but it’s not there yet.
Once i am use to Terri looking after me two nights a week, we will then find a third person to do two weekends a month. At that point, we will achieve a much more sustainable level of support. With my freinds "only" looking after me one night each and every other weekend.
This transition is a bit emotional for me. I’m staying in a place i don’t feel safe (my flat) with someone i dont yet fully trust (Terri). I know in my mind she is lovely, but at the moment we don’t have routines etc established. I cannot predict her very well, and that means my body tends to react extremely strongly.
For the last visit, i sat behind my bedroom door for multiple hours in order to feel safer. I shaked constantly for 4 hours till my body couldn’t shake any longer. Its taken almost 5 days for my body to stop aching!
However, i know long term this transition needs to happen. It’s easy to feel it as "rejection", but its not. My freinds do care, they don’t "want rid of me", they just need help as they are busy.
When i am so upset it can be easy for the negative thoughts about myself to creep in. Reminding myself i’m autie not naughty can be hard.
The urge, ironically, is to reject the care and "go it alone". I think this urge comes from not trusting Terri yet. If i don’t feel safe enough with her to relax, then there’s not much point her being there.
However, i felt this way about the babysitter in the past too. I just have to keep going and wait for that feeling to come. Hopefully in a few months time i will have adapted and got use to Terri being there and looking after me.
This transition is extremely hard. It is for everyone, with or without autism. For me its a transition to paid support not complete independence, but it’s still a huge challenge.
I am extremely grateful to my friends. Beyond supporting me each day, they are also dealing with all the various paperwork for funding etc.
We will find a way through. With the new simpler evening planned, i am much more positive and relaxed about tonights attempt.