This post is a tad long, but it covers lots of things, so if your interested in how we approach new situations and the techniques we use; grab a beverage of your choice and enjoy
Let start at the very beginning. What is it I want out of life?
Long long term, i am not sure. Certainly i’d like to help people, improve the world, and maybe even a family one day?
For now i am focusing on three big things.
Learning to live autonomously from my friends, keeping myself employed, and learning how to play and enjoy myself. This is a start at least!
In order for me to be happy i need all three.
On Thursday i made a major achievement in the first goal as i was taken the park by the babysitter for the first time.
This is a first step in autonomy away from my friends towards paid support. Here’s the full story.
Most of my day to day support comes from my friends either directly or indirectly. This has been the case for years. Until recently, it had been over 6 years since i had formal paid support in my life.
In this time a friend had taken me for every Doctors visit, swim, holiday or other adventure. During almost all of them i’d get very spaced out and loose my speech , etc.
In other words, they have had about 10 years practice looking after me in new places. Predicting what will make things easier, or harder , etc.
Importantly, they tend to either "take me" and look after me, or they help me to prepare and i do things alone. The middle ground (support?) i don’t do very well with. I either need a trusted grown up looking after me, or to have complete control of the situation myself.
To use an analogy, if i was an electric race car, they are the race team truck which gets me to the track. I am either in the truck, or operating under my own power.
This is important. The middle situation of "support" really does not work well for me. It requires too much negotiation and communication, in the end i don’t feel safe as i am neither in control, or being looked after.
Last August my life changed entirely. A routine operation intended to resolve a chronic pain issue went a bit wrong.
A two week recovery, turned into a complete rethink of how I approach my life because i reacted badly to the anaesthetic and painkillers.
I lost my speech and most of my other living skills. I needed more support than i had available at home and ended up staying with my friends. They suddenly had a much large care role in my life.
They are doing an amazing job. They found me a flat nearby and supported me to start living independently. However, i needed more support than they could give as they were busy with work.
We needed a babysitter. Someone who could stand in for them when they had to do other things. This gave us all more autonomy. Decreasing the pressure on everyone.
We were looking for someone too just look after me. Keep me company in the flat a few evenings a week and help me with dinner etc.
We ended up meeting Carrie; she’s an autism specialist from a local special school and she is the most awesome babysitter ever.
Carrie is a babysitter and that’s the simplest way to describe what she does. Imagine a babysitter looking after a 5 year old and you would be pretty accurate for how Carrie looks after me.
I spend my days somewhere safe doing my BBC work, and in the evening i return home for when Carrie visits. She then looks after me and makes sure i am ready for bed by the time a friend arrives to spend the night looking after me. We’re working on other people looking after me overnight too, but thats going way slower!
Because she is not a friend it’s taken over 9 months for me to trust her. I find my flat a very scary place to be. So when she visits i tend to hide in my room and interact with her via iMessages. For the first few months her visits would cause massive anxiety.
I still can’t "sit" in the lounge with her. When she visits i can just about manage a quick dart into the lounge to do something specific (return a plate or toy) but i have so far been unable to do it on demand or when expected. Eg, i can take a plate in, but i’d struggle to collect something if asked.
We have stopped trying to fix this challenge. We know the issue is the flat, so now we are changing focus. We have started the process of learning how to let Carrie take me places.
The first step was to get use to her car. For the first 6 months of visits, after some visits i would then walk across town back to my friends house.
No one was very comfortable with this arrangement, but i was too anxious around carrie to get in the car with her. I could walk to my friends house (and then collapse into bed when i got there) so i did.
Carrie’s car is yellow and black and i nick named it BEEE a while ago. Over a few months we build up familiarity with bee. Then one day, we went for it and carrie took me in the car from my flat to my friends house.
It was extremely hard, but a huge achievement. We then repeated it, daily for weeks. It got a little easier each time as we added routines. For example, we always listen to certain songs. We often take a distracting drink etc.
She also has three Winnie the pooh plushies which live in her Car. Eyeore, pooh bear and tigger. They are all dressed as Bees. She talks to them rather than me. For most of the time, she basically pretends i am not there as most direct interaction makes me anxious.
This works really well and we will continue to make progress with bee. I no longer sit in the back and i am starting to be able to interact a little. I have good days and bad days, but it is mostly positive.
Bee is key because Bee acts as a building block. A portable "safe place" we can use to retreat too when we try other things.
After a number of trips in bee, we then built up to me visiting carrie at the school where she works. Spending the day hiding in the sensory room and playing in the playground there.
That was also a huge achievement, it was a new place, but i didn’t go there alone. A friend took me and stayed till i was ready to be left with Carrie. I felt much more comfortable in "her" environment and not "my" flat.
I love riding swings, it’s in my top three activities. However the park is outside of my comfort zone for traveling alone. Eg, places i go when i am 100% in control.
This means, to go there i need to be taken and i don’t get taken very often because life is so busy. Carrie was keen to help. Taking me to the swings a few nights a week felt like a good goal to have.
A few weeks ago Carrie had some availability as she wasn’t in work. So she started visiting to look after me in the morning. One weekend she offered to take me swings.
Our first attempted didn’t go very well. I got into bee okay, but when we got to the park we couldn’t find the parking. I was very uncomfortable and we left immediately without stopping. Recovery took 3 hours.
On our second attempt, Carrie told me we’d just visit. Stay in Bee. Sit in the car park and listen to music.
That worked WAY better. Way calmer. Much simpler. We sit and listened to lots of barney songs and just observed the park. Watching the swings, looking at what’s happening. Getting comfortable. It worked way better. Recovery time was about an hour.
The third attempt was like the second, however this time we took a chewy toy (so i didn’t bite my hands / bag) and some coloured cards as traffic lights so I could indicate my anxiety level. We identified that at the park the anxiety was high so my normal communication techniques didn’t work. On this visit carrie also left the car for a few minutes. She set a timer and then left for 3 minutes, then 5 minutes so i was alone in Bee.
On the forth visit (the day after the third visit!) we did the same things. Sitting in the car alone, curled up with lion and a chew toy listening to songs (this time disney songs!). Carrie left the car too but stayed close by.
The forth visit was almost ideal when it comes to energy levels. I was utterly exhausted before we left. I’d been struggling to stay awake and it actually took me 15 minutes just to get out of the flat into the car because i kept falling asleep.
In the car, i was tired. I’d forgotten my shoes and coat. So it was just my clothing, lion, a chew toy and communication cards.
I was utterly spaced out. One of the first times i had been this spaced out around carrie. Its a good sign, as if i didn’t feel safer, i would have been having elephants or a panic attack. We often call this state derpy!
I don’t remember that much. But i do remember sitting, staring at the park with this huge longing to just leave the car. Previously, my body simply didn’t let me.
I knew on the previous visits that opening the door would result in a panic attack or me fleeing. Running away would have been very very bad, so i didn’t want to move.
However, this time i was so tired my body couldn’t run if it wanted to. After the second period of time alone in the car, as the last track on the disney CD ended, i asked if i could leave the car.
And i did. I didn’t run, i didn’t have the energy. I felt like an alien. My body was exhausted and everything was very difficult. But i managed it. I don’t know how long it took, but i made the walk from the car to the swings.
At the swings i couldn’t figure out how to actually swing, (i fell off trying) but meh, i can try that another day.
I went back to the car after, then we went home. By this point my body wasn’t working. I was calm, but couldn’t move my hands properly. Carrie took over, doing the seat belts etc for me after i struggled. I remember feeling really stupid as i struggled and then feeling really grateful / happy when she helped!
When we got to my flat she unlocked the front door and i i curled up in my bed. It took me 4 hours before i was okay to be left alone, and 14 hours before the aching and pain stopped. I was still "feeling it" 3 days a later. Ooops.
Getting to the swings was the high water mark for sure. In reality, frustration at my own ability meant i pushed WAY to hard. However, that’s not new and at least i did something useful. I don’t think a return visit would work very well. The exact mood is very hard to create on purpose, but at least we know it can be done.
Our next steps with the swings is to figure out how to make it trivial. Perhaps find more scenarios where i can be in Bee with Carrie. For example, visiting a drive through.
We will go back to the park again. Maybe next time just focus on sitting beside Bee and then build up more slowly so the recovery time is shorter.
Without a doubt i am more comfortable with Carrie outside the flat than within. Hopefully a new home in a few months time will help that.
This coming week is a huge adventure for me. At the start of the week (tomorrow) i am going to Salford to give a presentation about autism. It’s my first "Jamie in control" Salford trip since before my operation. Last time i visited a friend took me.
I think if a journey has me in control, i should be in control from the start. Going from being looked after to in control is very hard. It requires me to in effect "grown up quickly" and that’s very hard.
Instead, we’re going to use this as a chance to try Bee again. Carrie is going to come and collect me from the train station in Bee.
I’m going to take my communication cards with me. Knowing Carrie is meeting me means i can relax on the train (rather than spend the time trying to stay calm for the Train to Taxi transition). I will probably be in the same super tired derpy state as last time.
The station is much busier than the park, so we have been discussing methods for helping me walk with Carrie to the car.
It’s a transition of sorts. On the train i am 100% in control, then when i meet carrie i need to be able to "give her" the control so i am "looked after".
The main thing we need is to find a way for me to stay with Carrie as i get spaced out with all the people, but where she doesn’t have to direct me (as i won’t understand her directions).
My friends would typically just hold my hand but thats too much interaction for me with Carrie. I’d have a panic attack.
I have a walking harness which fits under my jumper. I’ve used it with my friends before, and i think we will try this at the station.
I can physically give Carrie ‘the reins’ when i meet her at the station. From that point on i can walk beside her and i won’t be able to run if my legs get the urge. Additionally, it will help keep the anxiety in check by providing compression and "safety" feeling.
I hope its useful to deep dive into this stuff. I’m living it week by week but its rare i explain something from start to end.
Being autistic is really hard sometimes, but i am learning that "fighting it" is not effective. I need to instead work with it and build on it.
The swings and hopefully the station are building blocks to future autonomy away from my friends.
It’s taken 9 months to build this level of trust, but once we have a system it will be easier and easier to bring other people into my life to look after me.
Once i am then stable (and staying employed!) we can then work on techniques to reduce the support i need in the future.
I hope this example is useful to others! If you have any questions or want more information, feel free to contact me via twitter or email.
