It seems i’m making double updates more of a habit at the moment. I aim to update weekly, but i often find myself in the middle of something i want to write about.
Last weekend was an ideal example of that. The first week of May was amazing, and unpicking why and how has taken over a week. Here’s my best attempt at relaying it.
In the raw, i had two huge and connected achievements. I went to grimsby and gave a presentation which was well recieved, and i spoke with a friend. An actual sort of conversation, in my flat.
How i was able to do those things slightly baffles me. I’ve been struggling with my speech and basically non verbal for 9 months! I knew i could still present (assuming some conditions are met), but being able to converse was new.
In the first week of May i went to grimsby with my friend Oli. Focus Social worked invited me to go and speak at their autism awareness day. I did a 1 hour talk looking at my autism, my independence and my work through the lens of technology.
In total, i spent about 50 hours preparing. For each slide i had 10-20 talking points, snippits of script and little nuggets to say. Preparing this all, getting my body to let me do it took a week. The weekend before had a massive meltdown when the enormity of the task set in and i felt overwhelmed.
Not only was i suppose to be doing the presentation, but also returning to BBC work and sleeping in my flat that week.
In the end my friends offered to let me stay so i could reduce the demands to something more achievable.
The talk was amazing. Public speaking is my easiest speech if i do’nt know or care about the audience. If the audience cannot effect my life; if i have structure and good preperation the words flow. I dont always know what they will be before i say them, which makes for a very free form and flowing presentation style. I just have to hope i don’t say anything to get myself fired!
To get the words to start, i repeat rote memorised poems. If they will flow, then i immdiately jump to some random subject which facinates me. I think in grimsby, i started by talking about sorting coat hangers.
The feedback was incredibly positive. For me, it was also amazing because i got to meet and spend time with Alan Gardner who is one of the most amazing people i have ever met.
The recovery time after the presentation was about 45 minutes and i did have to hide in the quiet room, but i didn’t go into a partial shutdown this time. I could still use my hands etc.
I dont get to use my words often so it was a thrill to have them. To be able to take thoughts from my head to the world so easily and fluidly. I feel as though normally i must communicate through a "straw". I have 1/100th of the communication of most people and i am completely dependent on those around me giving me the space to communicate.
With the presentation i felt very calm, almost, too calm. I derped my way through it speaking the words i had and generally having fun.
The irony is not lost on me. With people i know, without slides, in situations where what i say has importance. I cant get any words out at all.
I can speak to 200 strangers on a stage about pretty much anything with enough preperation, but i can’t verbally say my name to my friends or "i love you" to my partner. It is surreal.
The weekend after i got back Mick Curran (co-developer of the NVDA screen reader) visited me in Romford. We spent time together over a weekend on on Sunday morning he came to my house.
When he arrived i tried the trick of repeating the poems, and it didnt work. I was pretty annoyed. I had hoped that in a calm quiet place, without any pressure with someone i knew, but wasn’t involved in my life i would be able to speak.
In the end, i did speak. It started with single words, forced out as best i could, but over the span of an hour i got into a good monolog about somthing and the words flowed. Not sure it would count as a "conversation" (I think i was mostly talking at him) but its the closest thing to a real in person conversation i have had in months.
I dont entirely know why it worked. It actually scared me a bit. I didn’t really know how to model it, how to process it.
I guess i am slowly learning that my speech is not a simple matter. Its all useful data and it shows that after a month away from work and 4 out of 5 weeks sleeping in a safe place i can make good progress.
This all had a cost, on Tuesday morning the ‘meltdown from the week before’ caught up with me. I’d attempted to return to my flat with a friend sleeping over monday night, but as the evening progressed the elephants just got worse and worse.
My friends allowed me to sleep at their place monday and that took most of the energy out of the metldown at least. As meltdowns go it was an intense emotional, physical bubbling one. Not a full on explosion.
I knew i was pushing to hard with the presentation and having a guest, but wow.
It took a few hours to sleep of the meltdown once i’d found the tools. I used my pressure vest and i replanned my day. Taking time to sleep at my friends house where i felt safe.
Tuesday afternoon i did up some BBC work, frankly, it exploded in my face pretty epically, but thats a topic for another blog post in the future.
For the rest of last week i slept at my flat with support. Three nights in a row and they were also pretty positive. I got some productive work done, plus i spent some time at the mothercare cafe. Its a nice place to work from. I also saw more of Mick before he flew back to his native australia.
Next week is a much more routine week. I’m sleeping at my friends till Monday, then doing 4 nights at home with a friend sleeping here. We also have two visits from the overnight support lady.
All going well, Monday i may also try spending time alone with the babysitter in a public place (taking me visit the swings in her car) and also an hour alone in the evening with the overnight lady.
These are all challenges for me. However, just 6 weeks ago they would have both been impossible so i can mark some progress there.
Long term, we have a new plan forming. My current flat is not working out so we are looking at something closer to my friends house. Were also working towards establishing a more consistent support cycle over 14 days.
However, both of those topics will also have to wait for another blog post.
Its Satuday now, ive been at home for a 3 hours today, im going to now publish this and walk to my friends house the evening. We have pulled pork! Nom!
