All of the blog posts, neatly arrange by year and category… neat
This is my 6th week with the LD team looking after me and overall it is working well. I am just about stable and starting to get a good idea of what a sustainable output is. In some areas (like doing a weekly shop and my speech) the progress is really encoraging.
I’m writing this at 6pm on Friday, i wanted to get my thoughts written down before i headed to my freinds. I am suppose to be at my flat this weekend, but we cancelled those nights. I will stay with my friends so i can sleep better.
This post looks at how the last few weeks have gone. Some of the achievements, along with some of the remaining challenges.
I am happy my freinds are less stressed now the LD team is looking after me. I am also happy i can go shopping once a week and pick whatever food i want. I feel calmer and more stable and my speech is improving.
However, i really don’t like being trapped in my bedroom so much and i don’t really know what to do about it.
A short exploration of what elephants are and how i use them to shape my environment to meet my needs.
For the last 17 days we have been following a new support structure. The local learning disability and autism team have taken over my day to day support and taken the pressure off of my freinds.
Over the last week i have been amazed at how accepting and supportive the learning disability team are in how they work with me. This post explores why and how.
Today is my third morning since we started the new support plan and so far it’s going pretty well. To make it simple, for the first 5 nights the support person i know best has been looking after me and thats gone well.
My new routine starts tomorrow and it’s a bit scary but also very exciting. We are starting with 5 nights at my flat with the learning disabillity team looking after me.
My approach to the concept of masking and some the the thoughts behind it.
I was recently asked over Twitter to share my experiences with AAC, here is a summery of my thoughts.
This week has been a huge adventure. I have been staying with friends because the babysitter was unwell and the LD team are not ready to take over yet.
Tomorrow i am going to Germany with my freinds. We are visiting the [largest indoor waterpark in the world](german water park indoor largest) for a few days. This is my first trip to mainland europe and my first time in a country with a different language.
With that in mind, i thought it would be useful to share some of the tools i am taking with me and some of the techniques we will use
This post details the conflict I get into when I need to weigh a principle I hold against the pragmatic effect on others.
As we get towards the end of 2016 i wanted to document my support network now and also write a bit about the changes which are coming in 2017.
Some thought on what identity means to me and then how that influences the language I use.
When i worked in the BBC Radio and Music team one of the senior managers used to use the phrase "making bets" when it came to strategy decisions. I always liked the tone, it was a clear intention, but also an acceptance that it was a guess.
With that in mind, i’m starting to make a few bets of my own with my care.
The last few months have been really positive for me. We have mostly resolved the housing issues which where causing so much of the anxiety. Everyday still feels a bit like an exam, but it’s an exam i am well prepared for and can leave at anytime.
The reduced anxiety gives me a chance to look at how i am approaching my life and to re-evaluate my goals and ambitions.
Its surprisingly difficult to fit an extra bed into my flat alongside a sensible and safe working environment.
Documenting my experiences with pacing my energy use and managing FOMO. Also included examples of how to make communication more inclusive and the amazingly positive effect that can have on day to day life.
I’ve not been able to write as much since i moved into my new home for a few reasons. First, i’ve been really busy helping out a friend on a side project, and secondly because there’s not a whole lot to write about
This post is about a small but important achievement. I asked one of the evening carers to help me with someone outside of the normal routine. This is something i find extremely hard.
Today is my 27th Birthday and i have had a really amazing day with my friends. For those keeping track, i moved to a new home a few weeks ago and things are starting to settle. The new home is helping a ton.
In this post i look at the support plans for my new home and how i feel about the plans and long term goals.
In three weeks so much has changed!
New flat, new babysitter, new overnight support and refubished cafe!
I’m writing this on Sunday, it’s almost 6pm and i decided now would be a good time to document the last week and a bit before i started my evening routine with the babysitter at 7pm
Keeping this positive when my routines get interrupted it a challenge. Heres is todays attempt. Focusing on the future.
A post looking at the achievements i have made this week and why i think they were possible. Also a look at some of the changes which are coming up.
Please pardon the Star Wars reference, i couldn’t help myself. Today i submitted the paperwork for a new flat! We saw it at the weekend and it is very exciting.
The transition to paid support hasn’t worked yet. In this post i detail how we got here, what went wrong and what we are going to do next.
Its mostly positive
At the moment, i don’t really live in any one place. I spend most of my time between 3 places and sleep in 2 different beds most weeks.
The last 10 months have been some of the most challenging of my life. When i left my old home in Harrow for my operation, i knew it would change a few things, but i never expected it to change everything.
With so much in flux, i thought now would be a good time to pause and write up a summery. Here is the good, the bad, and the ugly of my life in mid 2016.
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.
I finally brought myself an Apple Watch. Well, technically Lion brought it for me. He’s the one with the money!
Last week at Apple’s big developer event, they revealed the third version of the Apple Watch software (watchOS 3). It’s a complete rethink of the how the watch works. It looks brilliant.
Last week was a very physically painful week. This week was the first week where paid support looked after me more than my friends did. Well that was the plan anyway.
This week I had an entire verbal sentence of communication when in my flat. I’m considering it an achievement. Sort of.
The last week has been good. It was extremely challenging in places, but overall the week was positve and i am proud of what i achieved.
I’m really excited because tomorrow i get a new bed! There’s a lot of hope resting on the new bed, so its a very big thing in my life right now.
May was a really positive and successful month for me. The month started with two big things. A return to BBC work after a month on medical leave and traveling up to Grimsby to present at a conference. Both things went really well.
I got the drive the car i helped rebuild!
I’m going on a trip to Manchester. In this short post i detail what i am taking with me and why.
A in depth look at how we approach new situations, the tools we use and the goals we have in mind. Plus a bit of background. It’s a long one! Grab a cuppa
A big mix of achievements, delivering a presentation, meeting a TV hero and even having a conversation using words. Sort of. All in an intense two weeks, with lots to build on and learn from.
The last week was a really big and important week for me. It was very hard in places but overall I think it was positive. I learnt some new things and I had a number of achievements
I invited Dominic to contribute after reading his Twitter account. He had free choice of any topic and has written the post below about his experiences taking his autistic son for an MRI
My life is surreal sometimes. I was super duper lucky and yesterday I had an awesome adventure to a special school!
It’s been a almost 8 months since i lost my speech, started living independently etc. It’s been a really interesting period. In this post i want to take a look at what topics and threads are swirling in my mind. Hopefully by writing about them i can inspect them better.
I finally managed to interact alone with the babysitter after 8 months of getting go know her and building up trust. Here’s the story of how.
Last week ended badly. Ive taken a week to reset at my friends before i try again. I’m also off work for a month to see if that helps me get a good start with a new support structure.