This week has been amazing. I’m really proud of what I have achieved.
On Tuesday I gave a presentation for the NAS at their Autism and Technology event in London. It was a really amazing day. The biggest thing for me was that i had my first speech in a very long time.
I was able to talk for about an hour and for most of it i was fluent. I cannot explain how exciting this was. Its my first free flowing speech in over 5 months.
I traveled on Monday, attended a panel event and i stayed overnight in a hotel. All big challenges. I didn’t manage to sleep in the hotel, but it worked.
Overall it went okay, i had to go hide after the presentation and the end was a bit difficult (i got a bit upset as it occurred to me i was going to loose my speech again).
I have experienced this before. When i went to CSUN last year, I didn’t have speech for 17 days, but I managed to speak for my presentations.
I have always found public speaking is my easiest speech. I don’t get the same amount of elephants. With a slide deck and a topic i know well speech is much easier. It’s a socially acceptable monologue, with super simple social rules. No complicated turn taking etc.
The presentation was well received. I’m going to write it up into a series of articles for those who want to see the content.
I really enjoyed giving it, it was a thrill to have my words again. They stopped shortly after, but they were there for a while. I now just have to work on getting them back more often.
I was really tired after the talk. I felt like i’d been run over. An hour or so after the talk (i think?) i was really struggling with my hands and coordination. For example, i could not hold a heavy glass for drinking and instead had a water bottle. I ended up falling asleep in the corner of the restaurant at lunch time.
My team helped me get home and then we had a routine evening with the babysitter. I cannot overstate how much the stable babysitter routine acts as a springboard for me. Knowing exactly what will happen when i get home is huge.
I wasn’t able to work for a few days. I needed a break from social demands. For me, the key to recovering quickly is to have a time away from any forced or difficult social interactions.
For this reason, i cancelled the meetings i had for two days. When i am tired and recovering the last thing i need is socially demanding meetings with people i am trying to persuade etc. It will just delay the recovery.
The key to my recovering is to keep to my routine. Rather than doing meetings for work, instead i focused my time on visiting the hub.
I’ve been visiting the Romford autism hub for about 6 weeks now. I go there to eat my lunch, and relax in the sensory room. Normally my visit takes about 1 to 2 hours.
This week, i ended up staying much longer. I think i was there for four hours both days. On the first day (Wednesday) i was still extremely tired still, i ended up falling asleep in the sensory room.
The hub is an amazing place. By having somewhere to go for a few days a week it means i get out of my flat. I feel safe and comfortable there which means i can relax in a way i cannot relax when i am home alone.
The sensory room is great. I tend to sit in there and read or watch the bubble tube. Its very relaxing.
After two days of recovery, i was ready to start the second big adventure of the week. Taking a trip down to Taunton to see my boyfriend.
This trip alone is a really ambitious.
I had delayed the trip once already due to not having enough energy. I didn’t want to delay it again. My normal support arrangements for the weekend were not easily available. Cancelling would have had a bad effect on everyone around me. Not impossible, but not ideal.
I struggle with travel, so i took it as a three stage process. First i took a Taxi into work using a routine i already knew. I did a meeting in work, then took a check for how i felt. This was the “point of no return”.
As i felt okay, the next stage was taking an uber from work to the station. When i got to the station, i went to the customer services and asked for help getting the train. They then helped me get the right train. My boyfriend then met me at the station.
For the most part, this fits my normal routine. I spend every weekend away at friends, this weekend is a different friend, but all the other parts of the routine are the same. I have someone meeting me at every end of the process and lots of support along the way.
I write this from my boyfriends sofa. I was very tired when i arrived. We ate some dinner and then brought some things in Tesco. Then i did some colouring and went to bed. I slept for 13 hours (!) and now i am writing this as we prepare for lunch.
Its been a really amazing week. Its all happened building on top of my normal routine with the babysitter and my friends. The talk and the trip have all been possible due to lots of extra support form my team in work and the train company etc.
I can’t do this every week, i am really tired. It’s a satisfied tired, but i can tell i have pushed to much as i ache all the time and i am finding things i could do before hard again.
The plan for next week is to keep it as boring as possible. I was due to travel for work, but we have delayed that for now. Maybe i will try that next month.
In two weeks time we have a new experiment to run too. The babysitter will be visiting every morning as well as every evening. I am curious how it will effect my sleep to have more support in place.
If we can bring the same stabilising routine to my morning as we have for my evening, then perhaps i won’t need support overnight. Support overnight is the most demanding on others, so if i can replace it with support for a few hours in the morning to start the day well, then it would save lots of money and hassle.
After 18 weeks i am really proud of my achievements. In the grand scheme of things its not much. I went into the city with my team and had speech for an hour, and i traveled from London to Taunton on my own. I needed lots of support and a simplified approach for both but i still did it.
For me these are the signs that my recovery is going well. I am also learning new skills. I am learning how to use help and support to best effect rather then asking for help too late.
I need to travel home tomorrow. I am taking a lunch time train and then taking a Taxi from the station to my home. I have timed it so i am will be back for when the babysitter arrives. So i get home straight into my normal routine.
I am looking forward to a few simpler weeks. I can recover some energy and start planning more adventures. Things are very positive.
