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 3: How do I do fun?

Following on from the emotional blindness discussed in Mindfulness Part 2, is the assumption that quickly becomes a belief that life is something that happens to you (at you).   In autism the concept that one has an intrinsic connection to everything that is experienced is almost impossible to comprehend, or literally impossible depending on which end of the scale of severity the individual sits.

For me this is an element where ADHD comes in as it’s this state of life being something that happens at someone from which the impulsive behaviour stems.   There is no predicibility, there is no cause and effect there is only the ‘now’ to which there are no boundaries because it is not possible for there to be too much or too little as follow on concepts to the understanding that all things are connected.  (Hence the parenting styles are dramatically different for spectrum kids – they simply do not understand cause and effect)

(It is also interesting to note that this is a state of a person who gets stuck on a traumatic event, is very depressed, or finds dealing with change difficult in the sense that ‘life has happened at me over which I have no control’ ergo I am powerless)

So if life is something that happens at you, how do you have fun?  being powerless and having fun are diametrically opposite.

I have always worked with Sofia on positive thinking, however, it’s not enough on its own.  It doesn’t bring fun.   That is not to say that she doesn’t experience fun in her life, it just means that she has no idea HOW it happens because she has no concept that she is responsible for it’s happening.  She needs hand holding towards the realisation that she defines fun and she does that through creative exploits she enjoys and the engagement with task, that it doesn’t need to have any greater meaning than that, and it comes effortlessly (as opposed to the state of distraction which is not the definition of ‘fun’ but a form of escaping because of percieved effort to deal with reality)

Doing photography has become her learning ground for this.  It is a creative exploit which she enjoys when she engages with it, but she struggles with doing it because she is demand avoidant as she percieves some other greater expectation.   Yet it really doesn’t have to be more than ‘doing’ for enjoyment of being creative and the results of which are satisfying.   In what she has done so far (I give her the task of 10 photos every so often)  it is clear that the moments where she is most engaged to task, she is producing the best photos – photos that she likes and gains satsifaction from.  It is in those moments she has created fun for herself, felt that fun, produced something satisfying with it and at the same time provided herself with a doorway to memories.

Creative = fun = product = satisfaction = memory = creative = fun = product etc.

Sofia is at least letting me lead her towards understanding fun.  I set the task of taking 10 photos, she does it (sometimes with a grumble, rarely immediately but she does it), enjoys it, and then she enjoys sitting with me and going through them (oops! a sharing activity has slipped in there creating human connection = more fun).  And most importantly, none of this fun is some crazy happy wild emotion, it is just simply feeling good, relaxed and happy.

Why is this important?  because this it the point of living.  This is where the present moment of ‘now’ exists.  This is where creation happens for more positive experiences to enter her life.  This is how she will get what she wants as God or the Universe falls over itself to give it to her and all she had to do was relax and enjoy the creativity of what she was doing.

 

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.

 

 

Autism & Connecting to Caring

A really big part of autism is emotional blindness in the sense that whilst emotions are present they are not necessarily consciously felt.

However, in order to socially interact and interpret our world we need emotional understanding, so the autististic brain compensates with assumptions, some generated from external information, others because “that is the way it should be” according the the book of said individual of what life should look like.

But assumptions are not always correct, they are castles of sand until a stronger material is found or the castle has collapsed. In the case of autism, because most of their reality is constructed with sand, sections are constantly collapsing and one could say that one of the measures of autism severity is the amount if brain time that is being invested in reconstruction efforts – more time being higher severity.

When it comes to emotions, more often than not, labels are applied according to circumstance rather than knowing what is actually felt, and because emotions are subjective, the sand castle can end up being unchallenged. From the out side it would be seen as actions not matching the words.

Before last week, if you asked Sofia if she cared about anything, she would say no. She has explained in the past that she doesn’t really feel much at all and she worries about it. I have told her not to worry, that she is having emotions, she just isn’t aware of it yet. She was relieved when at a funeral of a much loved friend a few months ago she burst into tears. She didn’t know what she was feeling or why she cried, but she was so happy something had happened that said she cared and was affected by the loss.

Last week we were talking about Canada and she was saying she didn’t care what happened on the trip, she didn’t want to go. I asked her if she cared about having a pet reptile. She said yes. So I pointed out to her that she does care about Canada then because if we have a horrible time because of her bad mood, she won’t get a pet. You could see the connection being made for the first time in her eyes. Yes she cares, she cares about what she wants, and if she cares about what she wants, then she cares about what is happening right now. Not only has she made a huge learning step (this is learnt normally much earlier) but she has also made a big step towards finding her present moment.

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.

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 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.

 

Raising Awareness for Adventures with Autism

%d bloggers like this: