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.

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.   

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

It’s Personal Development for Both of Us

I’ve spoken quite a bit about preparing Sofia for #Canada, and we have some great clearly marked objectives. We may only achieve them in part, but it will still be a big success for her.

Critical to this is going to be me. In the past travelling as been a survival effort for me. The critical aspect being getting her out & about & encouraging her to ‘see’ the wider world, to destress & if she learns a new skill or makes a development step then mission achieved & it was all worth it.

This year is different. This year my own mental attitude is going to be a model for her main goal on this trip which is to find the present moment of ‘doing’.

So in the coming 3 months (eek! It’s a little less now!) I will be pracitising being in my own zen & fortifying it as much as possible. This is not easy after 13 years of constant high stress & being entirely focused on her needs, but possible now she is at residential school so we are both now more independent of each other.

Sofia is very ready right now to develop this scaffolding for self management evidenced by her increasing awareness of her world. This year on the bike she is aware of vulnerability for the first time & expressed nervousness about going down hills. She is also starting to show signs of reflective thought/self talk. She was zero out of 10 at Christmas, she is now 1 out of 10. This is a huge step forward & now there is a crack in the door I want to fill it with the most powerful strategy I know that will protect her from mental illness in the future.

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