Photography, Autism and Sofia

I do understand that some may be wondering why on earth I present taking photos as an ‘issue’ for Sofia.  What could possibly be hard about pointing, clicking and recording the memory of an experience.

For me it exemplifies how autism is different thinking.  Whether you as an individual ‘believe’ it or not that it is possible for the action of taking a photo is difficult when physical ability it there, that doesn’t change the reality of the person with autism who, for reasons they can’t fathom any more than you, can’t take a photograph.

That is not to say that there may not be reasons.  The most obvious is Pathological Demand Avoidance (PDA) which effectively means that any demand or expectation made will be refused, avoided, reconstructed into something else, or whatever the coping strategy is for the individual for the demand.   I think this is over simplifying it sometimes though.  I think there are fundamental fears in Sofia’s case at least.  Fears of not being able to do something perfectly (which is the principle reason for her not trying anything new), fears of not knowing everything, fears of being seen less than a god with all the answers and therefore making her vulnerable in some way, and there may be even deeper fears as well.

What I do know is that it’s an activity Sofia would enjoy, and with a little encouragement of giving her a task of taking pictures she was soon picking up her camera without facilitation.   We had a back step for three days when she saw my post about her having fun with it but she was soon at it again with a grumble about ‘why do you have to always be right?’.   And now something incredible is happening.  I don’t know if it is the photography for sure but I know it’s playing a big part.

Sofia has remarked with astonishment that she is remembering things in her past.  It seems to be mostly events in her school experiences at the moment, but that she is remembering them at all is amazing.   Sofia’s memory of personal experiences has been very ‘thin’ to say the least and certainly unreliable, whilst her memory for facts and figures has been astonishingly good.  The memories she has had have been unprocessed, just stuck there like a video recording with no particular meaning, where as now they seem to elicit a degree of self acceptance, learning and growing.

Is our mindfulness work also playing into this?  I have no doubt it is, but without the process of observation through a camera lense teaching her brain a basic function of seeing the world in a different way, I doubt these memories would have started to surface at all to be processed and viewed through the lense of time.

I have been criticised for ‘over thinking’ all of this but I would rather over think and be aware of her struggles then come up with solutions that deliver results, than to not think deeply at all assuming there can be no change and let her miss out on even a drop of life that might be available to her.   But this is what autism parenting is – it is over thinking everything because we have to get our beautiful, different children to the water where they don’t want to be knowing they will refuse to drink even though they are thirsty, and then, if we are successful at getting them to the water, coming up with ingenious ways to get them to drink without them loosing face that they were weak enough to be thirsty (if that is the reason at all, it could be something entirely different in which case only over thinking will provide an answer, and we need that answer to help them to drink).

 

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.   

Please donate to help us :  Virgin Money Giving  or PayPal

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 not spirituality and wisdom because it can’t be bought or proven, it relies completely on faith.

On the Eve of Travel

Only a few days to go and I feel like I’m chasing chickens.   This always seems to be the way for me.  I live in a state of panic thinking that I’ve forgotten something and spend all my valuable brain resources trying to work out what it is, whilst ticking off the list all the stuff that actually needs to be done thinking they are the wrong things (if that makes any sense!).

On Friday morning I will check that I have all the documents and bank card, and leave wondering why I didn’t just enjoy the journey to that moment since anything forgotten can be bought or dealt with on the road anyway.

Sofia was home at the weekend and it gave me a good opportunity to assess the risk of whether we may need to return home early.   As it stands, the risk is less that 50% and I’m feeling optimistic that she will forget her woes and find a happy place for herself on the road after a couple of weeks.   It may be rocky before that, so for my part I’m going to use the next couple of days before we leave to do as much detailed planning as possible for the first few days in Canada to make it as easy as possible.

And whilst my general state might be panic, there are definitely sparkles of excitement in my belly letting me know this is going to be a wonderful trip for both of us!

 

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. 

Please donate to help us :  Virgin Money Giving  or PayPal

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.

 

 

 

Mindfulness Part 1: Motivating Sofia

One of the hardest things with Autism is motivation.  ‘What is the point?’ is not an uncommon state of questioning.  This is undoubtably linked to low awareness both of self and environment, and an understandable question when the awareness that does exist is confusing and difficult to make sense of.

We are setting off on our trip in less than two weeks and sadly Sofia has lost all motivation for it because she is in a high state of confusion.  Life has not worked out the way she expected in her first year at her new school.  The question, ‘what is the point?’ is currently very loud for her and, as is typical of children with autism, extends to questioning the point of life itself.

I certainly have my work cut out for me!   However, this contast she is experiencing will hopefully make the lessons she learns all the more powerful because for her the question is on this trip will be, ‘what is the point of finding the present moment?’

My response to her sounds something like this:

• All experiences you have, especially the ones you don’t like, cause you to create a desire to have experiences that you do like.   For example, if you taste something bad, you will desire to taste something good to replace it.
• When you focus on the things you already have and like and enjoy them, you will allow those things you desire to manifest into your experience because the universe wants you to have more of what you focus on.  Focus on what you don’t like, complain about it and fight against it, the universe will deliver more of that experience to you instead.
• That deliberate conscious choice of focus is what freedom is, it is not something that is bestowed on you by another, or removed by another.  To not be deliberate or conscious of this choice is to give away your freedom so that others can control the way you feel.
• When positive manifestation happens, enjoy it and desire more of it, or desire improvement of it.  This is an effortless process, sit back and enjoy.
• Your focus is what is controlling your experiences and that focus is experienced in the senses of sight, taste, touch, sound, smell and emotion.  When one or more is providing a negative experience, then use that to generate a new desire for postive experience, then focus on the other senses already in a positive state to allow the desire to manifest.
• Only you can create the reality of your experience.  Emotions do not inform you of that reality, they only tell you if you like what you are experiencing or not so that you can generate a new desire.
• Focus and desire are a dicotomy for creation like male and female.  Out of balance and creation will struggle to take place and will feel uncomfortable.   The balance for easy creation is found in the present moment.
• With autism the power to create is magnified and you have the ability to move mountains.   However, the path to that power is equally a magnified challenge.
• It is the true hero that walks that path successfully and it is a privalage and an adventure if you choose to take advantage of it.   And when you are successful, you will discover that life is actually a lot of fun and THAT is the point of all of it.

This sounds rather dull and deep for a 13 year old, however, I use words in a bite size simplistic way that appeals to her self interest, not wanting to be controlled and her powerful desire to have a better experience at school.  Certainly it is the basis of the lesson I want to take root in her mind that she can get what she wants.

Sofia is like water who needs the external force of a glass to maintain shape and cohesion.  It would be nice to see her start to take control of that shape so she gets to be who she really is to others and get what she wants out of life, rather than have them decide who she is she is and what she should have.

Part 2 will talk about expected mindfulness practise strategies I hope to employ whilst travelling

We travel 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.   

Please donate to help us :  Virgin Money Giving  or PayPal

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)

 

 

 

Quebec

New Brunswick

Prince Edward Island

Newfoundland

Newfoundland

Breton Island

Nova Scotia

Gaspe Peninsula

Quebec

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’.

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