Lots has been happening recently. In this post I am going to cover my return to work and new focus there. I will also detail my progress for my speech and some achievement in independent skills. The last topic is i will discuss the results of the panel decision and what we are doing next.
Last time i did a weekly update was 2 weeks ago, id just finished a very very good week off work. It was good combo. Less work demands and extra support as we also had morning visits.
It was really helpful and that weekend i had more speech than ever before without having to force it. yay.
When i returned to work i was very worried. In the week off i had started to get a feeling for how much the nature of my role in the team was effecting me.
Luckily, i have an awesome manger, and the timing works out well for me to change the focus of my job a bit. I had been managing the BBC Accsessbility Champions network (doing inductions, doing catchups, doing training, keeping track of everyone etc) but i was struggling. Other members of my team are going to pick up those parts.
I’m focusing on getting our new accsessbility website built. Its been on the agenda for a while, and it just got urgent so the timing works out well. The champions are in a good place so stepping away for a few months to do more tranditional (and less socially demanding) development work is good.
Its nice to be able to obbsess over something really big where i have lots of agency to get it done.
After the good week off and the extra support, i had more speech and that was really good. It’s not much more (3 extra words, ability to pick a tone for the a few words i have) but it wasn’t forced.
It was a short week back to work. I worked 4 days before i then went on a holiday with my friends to centre parcs.
Centre parcs is very Autism friendly, plus if 4 days of 24/7 support with no long alone periods in a place i dont feel safe.
This was my 4th trip to centre parcs and i had a few small achievements for the first time. I know its silly, but when we went swimming i went to the loo by myself for the first time. Lion goes in a special locker when we go swimming at centre parks, so going somewhere alone, which is loud is a huge achievement. My friends were still around to help.
I also took part in activities. I didn’t do as much as other people (i sat out most of the rock climbing session) but i had fun and i recovered spoons well after each activity.
These are all big achievements and show what is possible when i am not spending so much of my day fighting the elephants and getting so muddled.
Which bring me on to the topic of support.
We asked social services for help a long time ago and we have our first answer. They will pay for up to 21 hours of support a week at the day rate.
Getting an answer has been super stressful. I will explain why some other time, but at least the wait is now over. This is really good. They did not say no.
The original care plan the social worker drafted and sent to me included overnight support too. My friends do this at the moment and its critical to my ability to function. Without overnight support, i would not be living in my flat.
We never have managed to get stays alone overnight to be good. They always leave me muddled to the point where i can’t function the next day, or they trigger a panic attack and take a week or more of extra support to recover from.
I dont really understand the process but the overnight support was dropped. However, my friends are exhusted. None of us sleep in out own beds for long periods. They are either here supporting me, or i am staying at thiers as they cant come to mine.
Our plan is to use the money to pay for someone to stay overnight and to pay for someone to visit each morning. They will only be able to stay overnight one night a week (or one night every two weeks) but it should be enough that i have some buffer each month.
My flat has sold, so i have some money from that. It also reduces my monthly bills. I have finshed paying my student loan and i am also pulling out of the BBC pension.
Social services will hopefully pay for it in the future. I am very worried about my friends and how dependent i am. I cant risk arguing with them about anything incase they stop supporting me. I am lucky they are good people. We are all very aware of how bad this situation could become.
The extra support in the morning will hopefully help lots. It’s going to take a few months to get sorted (we have found a new babysitter, but it will be a while before i feel comfortable around them).
So thats in, the last two weeks have been very hard. Good stuff and bad stuff. At the down points i have been combating suicidal urges again (I end up feeling worthless when i see my friends struggle) but i am trying to stay positive so we keep moving forward.
Its not huge, but going into the toilets alone without lion at centre parcs is a huge achievement. Thats the first time in my adult life i have been totally alone without lion or one of my friends.
On that positive note i will stop writing before i think about stuff too much.