Category Archives: 2019 Blog Posts

A Special Interest for Travelling

Sadly Sofia heads back to school today – it has been a great couple of weeks riding almost everyday.

I’ve tried to do as much prepping with her as possible. One aspect of this has been discussing the need for her to have her own special interest to help stay focused on her surroundings and reduce any PDA (pathological demand avoidance) responses.

In Africa it was birds, animals and different flavours of Fanta. On this trip it is birds and photography (as an extention of her art) at the moment … the latter may be more of an issue as she doesn’t understand what it means to take a photo. Obviously she can perform the action and understand it is a creative modality, but it has no meaning for her at this point in the sense of not being able to internalise photography as a concept of creative expression – if that makes sense. So I’m hoping one of the staff in her house at school, who is a keen photographer, will be able to help her with this.

Conceptual understanding of the world in autism is a real struggle, especially where there is no intellectual disability because ideas can be understood/verbalised in an abstract way on one level, but conceptual understanding needs ideas internalised in order to take action on that information. With out that internalisation the connections between things have no meaning or value.

The main thing is that she attempts to take advantage of this trip for her own means independent of me and what I’m doing and pushes that agenda.

She needs a lot of encouragement to do this in the presence of others (me in this case) as she is constantly hyper aware of audience over and above her own needs. So this will be an on going conversation until we find the right note or even activity that will float her boat enough to over come this. This will work in line with ‘living in the moment’.

#autism #autistic #autismawareness #Canada #camping #bikersofinstagram #bikerkid #bikergirl #bikers #motorcycle #bmwgirl #bmwadv #bmwgs #bmw1200gs #bikelife #bmwmotorrad #advlife #adventure #travel #advbike #touring

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The Battle of The Tents

Tents have been a thorn in our side since we started travelling.

We went through Africa with a cheap dome tent that was heavy & we didn’t use it much so I dumped it in Zimbabwe and picked up light throw away ‘made in China’.

Then we went through Europe with a super light 2 man Vaude tent which was too cramped and Sofia especially struggled with this which meant the battle was on to camp – we did camp, but not as much as I would have liked due to the added stress on both of us. I love the tent though. It is easy packing and setting up, and one I (or hopefully Sofia) will use as a solo #traveller.

After that trip I discovered the perfect tent someone was using at the annual Overland Event. An Exped super light tunnel the only problem was that Exped had stopped production 15yrs ago and refused to sell me a spare.

All hope lost I got a cheap 3 man last year that at least gave enough bearable space for Sofia, only it is heavy (7kgs) and fills an entire pannier, so now we have a packing space issue. Otherwise a good tent that didn’t spark any major issues with Sofia so a big thumbs up on that front.

Canada, however, has to be a purely #campingtrip due to costs but now we have a lack of packing space, & at best there is no room for food negating one of the cost benefits of camping.

So today I started looking at tents again not thinking a solution was out there with only a year since last looking, when Vaude popped up with a super light (4.2kg) 3 man tent with standing room porch.

I can’t begin to describe the relief at finally finding a suitable tent. It’s like a weight of stress off my shoulders knowing that Sofia, who has been amazingly good considering her own battles, will finally have a tent that she will like and be #happy enough to stay in night after night or in wet weather hold ups, whilst meeting our packing needs.

The tent is £419 on sale, so we need your help! Please could you sponsor our tent with a donation (every penny helps!) – we would both really appreciate it!

Please donate to help us raise awareness for autism.

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Vaude comes up trumps for two up camping! We love this tent.

 

 

Canada Preparations

Canada preping on #Dartmoor ride. Ride – walk 2 hrs – then ride a distance.
Lesson learnt- not a good plan walking 2 hrs with biker trousers and boots! Not helped by me trying a kit variation involving keeping lining in making the trousers heavy to walk in. It was a good ride though, Dartmoor is stunning.

A big part of our #Canada trip is to slow down and ‘do’ more. Sofia really struggles with the concept of ‘doing’ and it triggers her pathological demand avoidance (#PDA) which is part of her #autism profile – this effectively means she refuses to ‘do’ that which she percieves is expected of her which is felt intensely and must be fought against and/or reinterpreted to her own liking. It is an anxiety state. From the outside this is often percieved by others as laziness, but actually it is anxiety driven.

Yet for her living in the future (aka in a state of anxiety) is more ‘relaxing’ than living in the present moment she tells me. A miss conception I hope to help her resolve in #Canada & hope in turn it will help her manage her PDA and enable her to do more. Because the frustrating thing for her is that it is not that she doesn’t want to go for a walk for example or draw the picture somone has asked her to, but she doesn’t understand why she can’t let herself ‘do’ these things.

How do I get her to do as much as she does with PDA? Constant negotiation and a huge amount of planning to ensure negotiations are successful. I don’t sweat the small stuff either, thats where the really big resistance is – in big stuff like travelling there is a fate à complis and serves as a distraction so small stuff can enter through the back door of her mind.

 

Please help us with a donation via our website (£10 =100miles) to raise #autismawareness

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Planning #Canada

Planning for #Canada begins. Sadly the friend joining us has decided to hold fire, we hope she changes her mind though as the extra dynamic will be good really good for us – the good news is that we own the map now.

I’m hoping the bike can start in #newfoundlandandlabrador so we can get the best of the weather there… also they have over 22 species of #whaleand #dolphin feeding off the coast in #summer.

Sofia has absolutely no idea how big this trip is going to be and remains neutral & I am now talking to her about slowing down, that this trip will not be rushed so we can enjoy more. Whilst time constraints didn’t help us before, there was also a strong element from Sofia to keep moving, moving, moving.

This trip I hope she really starts to get the feeling of the moment and enjoying it, as opposed to driving towards some future goal for fear of loosing it and missing the present experience (her current future goal is a pet bird – which will not happen until after this trip so the challenge is on!)

#autism #autismawareness #autismparent #autistic #planning #adventure#travel #motorcycle #advlife #bikers #bikelife #motorcycles #bikergirl#bikersofinstagram #instamoto
#instahappy #instalife @autismcanada @autismspeakscanada

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Developing Adventure With Autism

After the last couple of months being ill I am suddenly realising that Easter is here and I have fallen behind on many things!

It has not been an entirely idle period as I have managed to wade through the foggy brain and have started looking into the possibility of making travel opportunities available for children and adults with ASD.

As some may know, I put out a survey not too long a go asking specific questions to understand views towards travel in the autism community.

I am pleased to say that 100% of respondents agreed that this type of opportunity should be available for those on the spectrum.   I also received a lot of helpful feed back on what type of journeys people would consider, an insight into support needs and people’s general availability.  Thank you to everyone who responded.

I also received lots of feed back raising concerns about needs being met and flexibility to meet those needs, as well as direct responses saying ‘not my child’ or ‘not for me’.  Again, thank you to everyone who took the time to respond and discuss further towards helping me understand.

All in all though, it was a positive exercise and I have reflected on how to move forward with the idea and have decided the following:

  • To move ahead slowly – yes I would like to pursue this concept, however, to start with small adventures in the UK for level 1 and 2 ASD initially before making opportunities available for level 3 ASD (please see note (i) below).  If you are a parent/carer or an adult with ASD and you are interested, please use the contact form in the menu above and let me know.
  • To raise awareness for the benefits of travel within the autism community whilst at the same time for me to gain a better understanding of how best this service can meet needs.
  • I will pursue grants and funding applications in the medium term, however, I want to start putting greater focus on fundraising and PR this year.  Any help in this would be greatly appreciated!
  • Again in the medium term, I will look into setting up a subscription quarterly specifically on the subject of adventure, travel and overcoming challenges with disabilities as well as the carers who support these inspiring feats.  The current title for this quarterly is ‘The Big Challenge’.  If you have a story of overcoming challenges with a disability, I would love to hear from you.
  • ‘The Book’ on our adventure through Africa will obviously play into all of this.  I am chipping away at it, however, I still haven’t successfully pulled apart the 3 stories (Sofia, myself and the motorbike) to make a single narrative that is readable.  As I have also mentioned about a year ago, there is a second book that will be a Fantasy abstract of Sofia’s journey which both Sofia and I are working on, but remains a lower priority and will be many years in the making (it will be really good though!)

In the long-term, I have big ideas for AWA and what we can do for people with ASD but first one has to learn to walk before they can run!

Thank you for your continued support.

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Paypal (coming soon)

 

Notes:

(i)  Levels one, two and three is a needs based system to determine the support needs of the individual where levels are clearly defined and we can use this as a guide in understanding needs and capabilities. People may be more familiar with high, medium and low functioning as descriptors of ability level and therefore support needs.