Over the last few months I have been focusing a lot of time and effort on improving my independent living skills. At the moment I am very well supported day to day, so I am using the stable time to try and establish better skills for when I next need to live alone.
Coming back from chaos.
A few months ago before I was able to get more suitable support I was in crisis. It was very clear that living alone placed more demands on me than I could manage. Once I was overwhelmed the anxiety and panic attacks took over.
My new support arrangement (A friend living with me, handling most day to day jobs) has brought back the stability but it wont last forever.
I see this whole experience as a great opportunity to learn and improve. I know I struggle in certain areas, so I have been working with an Occupational Therapist to develop strategies.
Strategy 1: Timetable.
The first strategy we put in place was a timetable. I had tried timetables before but they had always failed. This time, we developed a timetable which was more forgiving and less demanding.
My previous timetables went to minute by minute precision. This eased my anxiety, but proved almost impossible to follow.
My current timetable deals with blocks of the day. Morning, and Afternoon. Activities are placed on the timetable and the timetable is also used to coordinate my support. For example, my timetable lists medical appointments and who will be supporting me for those appointments.
The timetable I am using only runs from Monday to Friday. The weekend is too variable. I also want to leave weekends to be very flexible. This means no essential chores cannot be left to the weekend. The weekend is a time when I have no demands. Two clear days.
My timetable is currently very sparse. The only “required” action each day is a shower before noon. From the perspective of my timetable, my work hours are optional. Another feature of my timetable is a defined “break” at 4pm. (±1 hour) That break is normally taken as a nap, it gives me a chance to recharge spoons in the middle of my woken period.
Strategy 2: Sensory Diet
A sensory diet is a way of managing my spoons throughout the day. Each task is given a rating from Double Red (very draining) to Green (refreshing). Then there are some rules around how tasks are ordered.
The main rule is that double red and red tasks can only be followed by green tasks.
This imposes some constraints on my flexibility. However, it also massively reduces the anxiety. So whereas I use to be very flexible, the anxiety would be crippling and lead to panic attacks. I now am less flexible, but also less anxious.
An example of a red activity would be a shower. They started double red, but by redesigning my shower space (I have only the bottles I intend to use, lined up in the correct order, I make all the decisions BEFORE I enter the shower) we have reduced it to a Red.
At the moment my shower is only due “sometime” in the morning. I aim to have it early, but in reality I often just don’t have enough spoons. After a shower I have very low spoons so I take a break to recover spoons before I continue.
Assume nothing, start small.
I mentioned before that previous timetables had failed because they were too complex or ambitious. This timetable is working because it’s not ambitious. Its been running for about 5 weeks now and it of the “required” steps I am only just consistently starting to get 5 out of 5 each week.
I am positive though, while many people can and do take a shower every morning without any issue, I can’t do that yet. I am building up to it. Over the next few months and years I will slowly increase the complexity of my timetable.
For example, from next week I am planning to add a “breakfast” task as a required step. To make that possible, I also need to introduce a “shopping” task. As it currently stands, the evening mean I get via my support arrangement is the only meal I eat most days.
It’s going to be a few months before I get consistent with those things. Once I am consistent with those things I can then slowly introduce smaller time limits and generally work towards having a sustainable morning routine.
My timetable assumes nothing. The reality is once overloaded I have very little ability to do things. It can surprise people, because most people see me doing things I am good at, they don’t see the challenges I have with other aspects of my life.
Starting from nothing and building up makes the timetable sustainable and something which is sustainable is more important than something which is complex but brittle.
I have secure support from now until September. I am using that time to establish the timetable and get support to follow it. Once the timetable is established I should be able to function without so much support. One day, I may even get into enough routines that I wont need the timetable or support at all.
The timetable and sensory diet approach has worked well for me. While it may seem overly simple, the structure it introduces has been really useful. The OT i am working with works with many people on the autism spectrum so I trust her judgement. A great deal of the work we have been doing is just pragmatic changes and developing routines.
When I first lived alone back in January I didn’t expect for it to be so difficult. So its been a bit of a bitter pill to swallow. To a certain extent I thought I had the autism beat… i was very wrong.
I use to reject many of the autism things as just being silly, or overkill for my needs. But it turns out some are extremely effective. After only 6 months, I would not be without my ear defenders and after 5 weeks I can see the value in the timetable approach.
It has been a difficult few months, but I am laying the ground work for a more sustainable and happier future so its been worth it. If you have any questions, feel free to leave a comment. Comments are not published immediately, so if you ask i question i can reply via email.