Tag Archives: autism community

Mindfulness Part 2 : Strategy for Sofia

Sofia’s school life was not quite what she was hoping for or expecting, in effect it is falling apart for her, and to make things worse, she can’t crawl into a hole and pretend it doesn’t exist, instead she will be thrust into thick of adventure travel and asked to deal with reality every single day for the next seven weeks.  As if adjusting to the road is not tough enough, she will be mourning the loss of her reality and having to find a new one.

This is undoubtably a difficult beginning to an adventure and helping her to transform her sense of misery to one of open awe and excitement is not going to be easy.    I do believe it will be possible though, with the therapy of constant movement, being outside all the time, and the safe head space of the helmet.

It would be nice to be able to just focus on my own present moment and model it as originally intended.  Give her the space to deal with her own issues.   As a strategy I will certainly try but Sofia is more like a tired toddler when she is in this state.  She needs to fight and push against someone, and that someone is me.  Ignoring it will only increase her feelings of abandonment and want to push harder.  Trying to comfort her will not satisfy her either.

I have to keep myself open and available to her until she has a melt down like a thunder storm that clears the pent up static in the air.   Naturally I will try to head it off but I will be on egg shells (whilst trying to appear not to be) until the sun has broken through the dark clouds in her mind.   Along with the strategies below, I will also be using Byron Katie’s method ‘The Work’ to help Sofia to let go of negativity she is holding onto for as long as the method works for her.

  • Sofia ‘needs’ to say things and ‘needs’ to be heard.  Instead of letting her control that, I will limit her as to how much ‘complaining’ she can do.  For every complaint my consistent words of wisdom will be ‘ when desire and outcome are at opposites, it means that there is something wrong in how you are approaching life and you need to change it.’   (she will likely hate me for this, but if it stops her from focusing on her complaints, and focusing on solutions instead then I’m good)
  • Sofia is going to, on the most part unknowingly in the social awareness sense, say things that are really off because she is in a negative frame of mind.   In effect, spilling all the stuff in her head out into the open which should be kept locked up.   I will likely get literal and assign certain times for talking as she needs to learn to focus more on the quality of communication that she is giving and keep those private thoughts private.   This is a concept she has no grasp of despite being told (she is completely blind to it at this time) , so I will be leading her by the hand to learn to do it without telling her what she is learning to do so she can’t resist it.
  • Each morning I will encourage her to state what she would like to happen that day and each evening to review the day and say what she would like different or more of, then spend a moment being glad to have certain things that support her experience.   This is likely to start in a very small way focusing on only a small part of her daily life, but the goal is to expand it to incorporate the entire day after a few weeks.
  • Encourage her to take photographs.  The initial reason is that it gives her the lense to view the world which she might not look at or see otherwise.   She really only sees the world out the corner of her eyes so this will help/ecourage her to see it more directly – I know it will start with photos of leaves or rocks, but everntually she will start to see other things through the ‘lense’ and I hope we will see that progression in the photos through out the trip.    This I hope will unltimately help her to develop her creative skills as well.   (Note to self – buy lots of micro cards!)
  • Encourage her to notice stategies I employ to help me reach my own present moment and to not comment if she copies me.

 

Sounds so easy when written in words!     Add the finding of food and shelter, and thinking of safety and risk assessing in relation to just about everything, AND making sure it’s all fun,  then my job description as ‘mother on the road’ will be complete  😀

Post Script:  Sofia has now vocalised that she doesn’t want to go or would like to cut the trip short, that it feels too difficult to do a whole summer.   I have told her that the point of the trip is for it feel as easy as possible with what we have, but if after New Foundland she is still struggling, then it won’t be a problem to head home early.  In our conversation last night some information came to light that has made me deeply worried for her and makes an early return not just an appeasing statement but a real possibility.  I will be deliberating over the weekend whether we should be doing this trip with the motorbike or if I should I cut it short now and make other plans.

 

We travel on motorbike and share our story to help raise awareness for autism and the benefits of adventure travel as a platform for learning life skills for autism.   

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Sofia was diagnosed with Autism when she was 4 years old.   When she was 10 years old she under took her first journey in a sidecar from the UK to South Africa.  Since then she has started to ride pillion on a motorbike and travelled Europe and this year goes to Eastern Canada.  She is now 13 years old and the skills she is learning on this journey are related to maintaining positive mental health.  This skill is the hardest of the life skills to learn, harder still in a modern world where materialism and science define life and spirituality and wisdom not because it can’t be bought or proven, it relies completely on faith.

 

Our Route Plan Through Eastern Canada

The 9 sections of our route in eastern Canada (see below) all packed into one neat little photo.

Average milage is 1,100m per week – which may be ambitious going from past experience…. but the past experience has always included problems that I hope we won’t have on this journey!

Newfoundland will be place where we make up time as the plan is to stay no longer than 3 weeks, giving us extra time else where to do some back country roads.

Thankfully wild camping is common in most areas, however, it’s mostly done with RVs so we may have an interesting time finding locations suitable for a tent!
An interesting fact: Nova Scotia is a major blueberry exporter and from middle to late august various towns will be holding a blueberry festival which we hope to hook into for Sofia’s birthday on the 18th.

We are riding to raise awareness for autism please make a donation (Virgin Money Giving or Paypal links in the left column under menu)

 

 

 

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.

 

 

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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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.