Blog Archive

All of the blog posts, neatly arrange by year and category… neat

Archive of: 2016

AAC for verbal autistic people.

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I was recently asked over Twitter to share my experiences with AAC, here is a summery of my thoughts.

A taste of independence & autonomy.

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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.

Travelling Tools & Tips.

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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

Language matters: why I can't recommend some autism trainers / authors.

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This post details the conflict I get into when I need to weigh a principle I hold against the pragmatic effect on others.

My Support Network.

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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.

Identity is hard - why I use identity first language

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Some thought on what identity means to me and then how that influences the language I use.

Making my bets: new support plans.

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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.

Where to develop next?

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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.

Abandon Office, Abandon Office...

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Its surprisingly difficult to fit an extra bed into my flat alongside a sensible and safe working environment.

 Pacing & Fear of Missing Out.

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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.

Getting Settled

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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

I asked for help yesterday.

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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.

Brilliant Birthday

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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.

Support plan at my new home.

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In this post i look at the support plans for my new home and how i feel about the plans and long term goals.

All Change.

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In three weeks so much has changed!

New flat, new babysitter, new overnight support and refubished cafe!

Balance is improving, yay!

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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

In the future...

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Keeping this positive when my routines get interrupted it a challenge. Heres is todays attempt. Focusing on the future.

New support plan going well.

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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.

A new hope - new flat

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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.

Rethinking my support timetable.

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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

Living between two places.

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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.

10 months in - a summery.

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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.

How we are managing the transition to paid support

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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 got an Apple Watch!

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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.

A painful week of change

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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.

The shouty lady next door.

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This week I had an entire verbal sentence of communication when in my flat. I’m considering it an achievement. Sort of.

Recovery Week With Many Achievements

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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.

New Bed Tomorrow!

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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.

Three amazing weeks.

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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.

Diving the MX5

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I got the drive the car i helped rebuild!

What's in my Travel Bag

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I’m going on a trip to Manchester. In this short post i detail what i am taking with me and why.

Adventuring Out: Swings

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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

Grimsby & going home.

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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.

Returning home to new support.

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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

Guest Blog: Dominic Green - MRI (aka coffee shop tears)

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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

Visiting the school.

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My life is surreal sometimes. I was super duper lucky and yesterday I had an awesome adventure to a special school!

Collecting my thoughts at 8 months.

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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.

Achievement

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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.

Where we are heading.

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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.

Accepting Autism: Being 5.

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I have always found identity to be a tricky thing. Part of my autism acceptance has been accepting i don’t "have to be" normal. Not entirely anyway. In this post, i explore what it mean to accept the autism and to get comfortable with something "being 5".

Difficult times, promising future.

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The last few weeks have been a struggle. Not quite as much of a struggle as December was, but without doubt we have hit an inflection point.

2016 Ambitions.

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A short overview of some of the things I want to achieve by the end of 2016.

My chameleon circuit is broken.

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The TARDIS in Dr Who looks like a blue police phone box all the time because it’s ‘chameleon circuit’ which sets its external appearance is ‘jammed’.

Importantly it’s not a blue police phone box. It’s still a TARDIS. It just looks like a phone box.

Meltdowns again.

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Life is complex at the moment. There are a number of challenges all going on at once and it’s been a tough for weeks.

Catching A Meltdown.

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Panel Decision at last. Mixed outcome.

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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.

Day 2: Adventuring at centre parks.

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Centre Parcs Journal: Travel & Arriving.

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Starting and Ending the day.

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We’re using a technique from last weeks Experimental morning visits where we defined the start and end of the day with specific drinks.

A good week.

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A really positive week to relax and recharge. Positive noises from social service (after a trip to anxiety hell!) and an interesting experiment.

About

Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
Lion: @Lickr