Tuesday, 17 October 2017

Pacing, disability and illness.

As a general rule, I don't refer to my disabling conditions (HSD, POTS etc) as being ill or being sick.

Why - when they can make me feel so very ill?

Because if I see my normal as 'ill' then when I get a common illness (cold, stomach bug etc) I find it harder to have sensible strategies for dealing with it.

For example: I currently have a cold - with all the standard symptoms.

But in addition, when my body is fighting an infection my POTS is worsened too and I get a racing heart and horribly dizzy every time I cough. And the fatigue makes joint control and EDS management more difficult - everything kind of plays of everything else. Unfortunately this means that mild infections that many average people could 'take some meds and power through' really knock me down.

My normal pacing rules are for 'healthy me'.

I have different rules for 'sick me'.

So right now I'm operating on sickness rules.

This includes: blankets. TV, Kids DVDs, or 'pride and prejudice'), naps, lots and lots of tea, carefully chosen meds, that don't mess with my heart (no standard cold meds with phenylephedrine!) and time off work. Because experience says this helps me get over it and back to 'healthy me' quicker.

And as a result I don't worry that my POTS and EDS are worsening - I can have a sulky moment about having a cold and feeling rubbish, safe in the knowledge that it will pass, and I will start to feel better again soon - and at that point I will switch back to 'healthy me' pacing.

Ok, so I'm writing this which is technically work.

But this is all I intend to do today.

Because I'm ill.

And taking time off work when I'm ill is a very constructive thing to do.

[Note: This works for me, with my combination of conditions. It won't work for everyone.]
[Also note: This won't affect orders from our shop - because I have a very handy PA!]

Friday, 13 October 2017

Rochdale Autism Conference

Yesterday we were at the Rochdale Autism Conference with our stickmen.

Although the lecture room was too hot to get more than a few snippets of 2 of the many talks, I was impressed with what I heard.

There was one about body language - I heard the section on eye contact. Rather than saying 'teach them to make eye contact' it went through some of the unspoken and unconscious 'rules' that many NT's know by instinct but aren't always conscious of, like that if you look anywhere in the triangle between tip of nose and outside of eyebrows (including they eyes) - that communicates interest and listening. Looking at the mouth is flirting behaviour - or means they have spinach in your teeth or are lip-reading. It really highlighted the importance of not trying to force rule-compliance, but creating rule understanding- and also realising that we don't have to make eye contact - focusing on the bridge of the nose, for example, can be just as effective in communicating that interest. (at this point I melted and had to leave)

The talk by Ros (an autistic woman) was brilliant - very real. Pointed out the absurd communication contradictions "would you like to sign in" means please sign in or I'll get stroppy. But "would you like a cup of coffee" 30 seconds later means "you can if you want, but you don't have to". - but how is she supposed to know when it's giving an option and when it's a 'polite' demand? - which NT's just seem to 'know'. Because the NT's automatic is an autistic's conscious and constant learning process and logical 'working things out'. Similar issues with deciphering 'can you' - is it an "are you theoretically capable of it" or a request that you do it now?

She also covered things like how dealing with money in the classroom was fine - she was good at maths. But in a shop? - not a chance. one mars bar is 50p, the change from £1 will be 50p - she knows this - put mars bar on the counter...and it becomes a social situation 

"isn't it lovely weather" 
...where did that come from? What has the weather got to do with the cost of a mars bar? 
"Would you like our carrier bag?" 
why are they asking for my opinion on a carrier bag? Do they mean do I like the colour, or the design? Is it some new marketing campaign that they are researching? If I say no, will they get really upset? 
- all these thoughts and processing taking up the space needed for processing the actual transaction she came to complete and creating a very stressful situation.

She spoke about how these situations aren't things autistics are incapable of understanding - but that they all need to be consciously learnt - rather than instinctively picked up. Which takes masses of energy and concentration - and can also come with a feeling of huge pressure to get it right because everyone else seems to get it so easily - and a sense of failure when they get something wrong that everyone else finds obvious. 

As a non-autistic, it was both refreshing and eye opening to hear about autism in a way that was so real, and practical and lived. I wish I'd been able to hear her whole talk, but the heat said no so I had to leave for somewhere cooler to lie down.

It made me realise how vital it is that I am direct and clear with how I say things. And not to underestimate the energy expended by an autistic person navigating social interactions.

They also had a group of autistic teens talking about their experiences. I didn't hear this part but the feedback I heard about it was great.

And from a stickman point of view - it was good. The only downside was that the room with the exhibitors in was small and got really crowded. I think a lot of autistic visitors didn't make it into the exhibitors area although a lot of the professionals did.

Having said that, we had lots of people discovering our resources for the first time. And lots of great feedback - especially on the status squares, wristbands and keyring cards.

We had one fascinating incident where we tried (I'm not sure how successfully) to explain to a non-autistic adult that stickmen weren't just for primary school children, but were designed with teens, and adults, and that the colour and humour helped break down barriers and assumptions - making the cards more effective. We know not everyone likes the colour and simplicity - that's fine. We all have to find what works for us. But this individual firmly believed that no autistic teenager would use them. A little voice of doubt started to question my work. Then an autistic teenager came over - and went flappy at the 'Go Away' card - which was actually borrowed later in the day (with a lanyard) after an overwhelm happened, and they'd recovered enough to go in and listen - but were not ready to interact with people. 

All in all an exhausting, insightful, and worthwhile day.

Sunday, 8 October 2017

Autism and adapting the language on our cards

This is not a blog about what language should be used.

It is a blog about some changes we are making to our cards in response to customer requests.

During initial card creation (in consultation with autistic people) 'person with an autistic spectrum condition' was chosen as it includes those who are on the spectrum but don't identify as autistic. Since then, it's become clear that lots of autistic people - including all my customers that I've spoken to recently - prefer "I'm autistic" - and that not all cards need to mention autism.

So we are re-wording some of our cards to try and find the right balance. On cards likely to apply to people who don't identify as autistic we are trying to change the wording to make them generic instead of autism specific, and changing autism-specific cards to read "I'm autistic". Below are the cards which currently mention autism specifically, and the changes we are suggesting - but before we finalise them over the next few weeks/months, please let us know your thoughts by commenting on this blog post, or replying to the relevant posts on twitter or FB. We won't be able to do what everyone suggests, but we will take all views into account as we come up with the final versions.

1. Current ASC eye contact card:

Suggested edit: "Please don't worry or take offence if I don't make eye contact - I find it difficult and it can make it harder for me to follow conversations or process what is happening." (So it becomes a general card applicable to anyone who struggles with eye contact) (I would be especially interested in feedback on this re-wording as I suspect there are other reasons eye contact may be difficult too so I need a bit more input to make this the best it can be.)

2. Current "Autistic, not naughty" card

Suggested edit: 
Replace the first sentence with: "My child is not being naughty, they are autistic." (rest of card to remain the same.)

3. Current 'Overwhelming' card

Suggested edit: "I'm autistic and find this situation overwhelming. Please let me have the time and space I need to calm down." [Edited to add: This is already also available as a general card with no reference to autism]

4. Current: "Don't stand to close" card

Suggested edit:
Replace middle sentence with: "I am autistic." (the rest of the card to remain the same. - this card is also available with no reference to autism)

5. Current ASC disclosure card:
Suggested edit: Replace first sentence with: "I'm autistic." (the rest of the card to remain the same.)

6. Current ASC new routine card:

Suggested edit: Remove 'I have an ASC' - and leave the rest of the card so it becomes applicable to all conditions where new routines are challenging.

7. Current ASC Personal Assistant card.

Suggested edit: Replace first sentence with "I'm autistic" - rest of the card to remain the same.

If you are autistic, on the spectrum or not-autistic-but-would-find-these-useful, please let us know your thoughts.

Thanks in advance!


Thursday, 5 October 2017

An apology to staff at Niagara Falls.

(Note: Maid of the Mist is the boat that takes you up to the Niagara falls)

Dear 'Maid of the Mist' staff,

On the 19th Sept, I visited Niagara Falls with a big group of friends, and we went on the Maid of the Mist.

It is a lovely place. As it was such a hot day, being out on the water, in the mist from the waterfall was even more special.

But I feel I should apologise to the staff.

I didn't mean to terrify you.

You see, as an experienced wheelchair user who is young at heart, I love going down ramps. While I will always be in control of my chair, I will also go pretty fast when I decide it's safe to do so. My gloves giving me excellent braking power while avoiding friction burns. If a 'down' ramp is immediately followed by an 'up' ramp I will usually try and use a bit of the down hill momentum to help me up the next ramp.

I was with a large group - who all know me and are used to my approach to slopes. They are used to my normal.

So I went down the ramp onto the 'Maid' in my usual manner. In full control, knowing I had the space I needed, hoping to use my momentum to get up the second ramp, thoroughly enjoying the experience, and forgetting that you weren't used to my normal.....

I didn't expect you to jump in my path to save me!

It was impressive - and although it wasn't needed, it did show you were totally switched on, which I honestly appreciate.

I hope you have recovered from the shock. You coped admirably - trying to adjust from 'full panic stations rescue mode' to 'calm, helpful, polite, assistance mode' at a moments notice is not easy, but you managed it - and even stayed friendly and helpful despite the scare I gave you. I'm sorry if I made your hair turn gray.

Next time I'll give more warning of what I'm about to do and hopefully avoid any further traumatisation.

And thank you for letting me bum-shuffle up the stairs so I could join my friends on the top deck, and to the captain for showing me the best place to sit - while making me promise sincerely I wouldn't move fast while on the boat. I don't think his heart would have coped if I had!

So once again, I'm sorry for giving you all such a scare, but thank you for forgiving me, for being such a lovely bunch of people, and for giving me such a lovely time.

Your sincerely,