This week I am running an experiment. Here’s the very short version.
I am seeing what happens when I increase my support hours each day from three to four hours, but we place one and a half hours of the support in the morning rather than having it all in the evening.
We’re hoping this change will help me get more out of the support time by extending the approach which is working in the evening to other parts of the day.
A good outcome would be less anxiety and greater happiness, a great outcome would be less reliance on overnight support in order to maintain my independence. This is because overnight support is so expensive, difficult to manage and limits my autonomy and flexibility.
And now for the longer version.
Support in the morning and evening is closer to what we planned when I originally moved into my flat. The hope then was that I would manage with 15 minutes of support each morning and then a visit to my friends each evening.
This quickly turned out to be massively ambitious. It’s not impossible, that’s for sure. But when we tried it I just didn’t function. I simply didn’t have the energy and the time being home alone was too challenging. The anxiety was to much to keep at bay, I had panic attacks, I got in a muddle and it was unsafe.
The way we approached it was to simplify things. Rather than being alone each evening or traveling across to a friends, we found a babysitter to come look after me.
My friends then take it in turns to spend the night at my flat with me. This worked better but, the demands where still to high. I abandoned my flat for 2 weeks at the end of 2015, and when I came back in 2016 we arranged extra support during the day. We did this by arranging lunch time meets, going into the office and visiting the Romford autism hub.
The net effect is that I am rarely home alone for more than 4 hours, and this has worked well. I still get very very tired, but my basic day to day living appears to be stable.
Now we are looking at how to go from "not getting worse" to "progressing".
The main hope is that by moving around the support I have, perhaps I can get more out of it. This may mean I will either be able to work more, or I could manage with less support.
The babysitter who looks after me in the evening works in a school and they have half term this week. So she suggested using some of the time to experiment a bit.
We’re using her extra availability to add a morning visit into my day from someone I know and trust.
This week we have a new timetable which provides more support in the morning.
From 8:30am to 10am the babysitter is visiting and were using the same system as we do in the evening. When she arrives she writes a schedule and then I follow it.
She then provides support and reminders. As part of that schedule, I also plan the rest of my day. I have a big timetable on my wall which has the rough plan, but we then fill in all the details together before she goes.
She then leaves, and returns in the evening.
Today was the first day of the new routine and it was mixed. It’s a change and i experienced anxiety as we got going. We’re following a modified version of the routine I have been trying to follow myself so it was not all knew, but it was a bumpy start.
Once we got through the schedule I started feeling better and now I have a better idea of what each morning will contain I hope the elephants will be much reduced tomorrow.
If this week works well, then we will try it more. Another member of staff at the school has shown interest in taking on morning visits.
I often feel very very guilty about using support. I am not "thrilled" at the idea of needing more time, but I do like the idea of building on what is working to make my days simpler.
If for example this change allowed me to be in the office 2 or 3 days a week, or to recover more quickly from big trips and events it would be worthwhile.
I fund my own care at the moment. The only reason its possible for us to try this is because I have now finished repaying my student loan which has free’d up a bit of extra money.
If long term this does reduce or eliminate the need for overnight support then we could be a really good thing.
