Week 46 - Support plan at my new home.

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The new flat is going well, while it still feels a bit strange and odd, it feels safe and that makes life way easier. Rather than spend energy managing my body’s reaction to a bad environment i can now get on with my recovery!

Part of that is getting support sorted out so i don’t get overwhelmed. I need to manage demands carefully so i can stay working. The money from my work then funds most of my care.

I have relatively little energy available and most tasks i find very draining. Additionally, i still get strong anxiety around change etc and that takes even more energy to manage.

My friends are amazing and for now will provide most of my support again. We’re going to get more third party support in the future, but right now we just need to get settled. Meeting new people can come later.

From Friday 6pm to 8am Monday i will stay with friends at their house. It is safe and they do a great job looking after me. There is a spare bed i can use and it is stable. I can recharge and rest there. I tend to also walk to the cafe for lunch.

During the week i will be at my flat, spending from 8am-6pm unsupported and then from 6pm - 8am being looked after.

The unsupported time will be spent working as much as i can. From my home office, from the office at my friends house, or from the cafe or autism hub. Basically wherever it is safe for me to be.

In the supported time i will be looked after so that i can relax and recharge. We have a new babysitter doing evening visits from 6-8pm and friends are taking it in turns to stay overnight.

Longer term.

Once we have done this a few weeks to get stable, we will then move on to slowly introducing new paid carers. My friend is managing this for me and working with a care agency to get it all sorted. Eventually most of the support hours will come from paid third parties (e.g. babysitters or carers) and my friends will again be able to step back a bit.

How it feels.

It feels bloody weird. At first after moving i wanted to do everything myself again. I didn’t want to be a "burden", however it quickly became clear i was being hugely unrealistic.

I enjoy spending time with my friends so it does feel weird to know that the plan is for me to interact with them far less. I will mostly be looked after by relative strangers and that is scary. I don’t have the communication to easily interact with new people and it can quickly turn into a panic attack and they are extremely scary.

That said, i will get to know the new carers and then over time will be able to do more things because their time is dedicated to my support. For example, they can help me get to the doctors or dentists, or to the park etc. I can gain more autonomy by accepting the support that is being arranged for me.

Only by accepting the support will i be able to rebuild something sustainable and keep myself employed. Its hard to accept, but accept it i must.

Final thoughts.

Things are going well. Its not perfect and sometimes the emotions are very strong. Feeling very limited or isolated without speech can be upsetting. However, we have a solid plan and we have done most of it once before.

My approach is to consider the next few weeks a rest-bite of sorts. I have time to settle and get to know my new home before we start the process of adding in new people.

The future is one where i have more autonomy and freedom to work, play and have a social life. That is a really good and exciting thing.

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Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
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