Tag Archives: autism parent

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.

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


A Different Kind of Adventure: Hiking up a Storm!

I’m not shy to push the envelope with Sofia to help her move forward in life, to learn through actual experiences and to gain confidence for more.   One of the aspects of this is related to physical activity.

Getting Sofia to be physically active has been extremely difficult.  In Africa it was wonderful to see her come out of her shell a little in this regard.  When we were preparing to leave she started trying to tie her own shoe laces, by the time we were in Greece she started using a knife and fork correctly, and by the time we were in Sudan, she was starting to take little risks related to climbing which continued to expand for the rest of the trip.

In Europe too, a little of this returned when confronted with bunk bed ladders, where out right refusal didn’t happen (as is normally the case) but this time a brave ‘I’m going to try, please help me’.  Try she did and succeeded much to her delight and she had tried enough times that she by the end of the trip she was starting to feel confident.

So when she started home schooling I decided I would try to make walking more of thing for her.  Short walks in nature when the weather approved so that she would not feel any resistance.  She enjoyed this, or rather she wasn’t objecting to go out for one, so I started thinking bigger and wondering if it wouldn’t be a good idea to do a proper hike with wild camping, the works.

Long story short this came to fruition this last week.   Inspired by a group of Facebook of women who are getting out there climbing, cycling, hiking, biking, or what ever adventure big or small (Adventure Queens), I finally put a plan together.

39km around the Wiltshire country side, with the sell factor being the crop circles.   Sofia loved this idea!


To be fair, I was pretty sure, considering our state of fitness, that we would likely not manage the full trip, and that some pain may be experienced and that Sofia may at some point, fall out of love with the idea completely.  But as with all the travel we have done, the whole point is being out there and having no choice but to deal with her issues be they internal or external and she will never learn how to deal with them if not presented with them experientially.

And so we set off on a lovely sunny Thursday afternoon in middle England.  Our first stop and where we would leave the car, Martinsell Hill.  This hill directly overlooking a crop circle that only appeared last week.   Sadly, however, the farmer had cut the pattern out, but rather than dampen our spirits it gave us momentum to see the others at Hackpen Hill about 15km away and the site of the White Horse.


It wasn’t long we were off the country lane and into fields and small woodlands.  Now it is worth mentioning at this point that in Sofia’s recent assessments dyspraxia and hyper mobility were flagged, and in part I would not have done this hike if I didn’t have these as a source on knowledge for monitoring Sofia.  But likewise, it made this type of challenge more important because in truth I have never challenged her in this way as I wasn’t sure what the situation was and it is through challenge that the mind starts to focus and find out what it is made of.  She was also wearing a back pack of about 4 or 5kg to promote this need to focus.


The walking for an average person was very easy, maybe a bit lumpy in places, but generally very good walking.  For Sofia on the other hand little lumps and bumps and tufts of grass are a challenge.  She had to really concentrate and look where she was going and with some weight on her back it was important.  EVERYTHING about this experience was new to her.  Yes she has walked down paths and over rocky terrain to get to a place not far and never carrying a weight and always reluctantly so, but never for the sake of the body being primary transport over a long distance. She was doing very well.

There were a number of stiles we had to climb over and she demonstrated well how much her confidence in that area had improved by clambering over them with a degree of alacrity (back pack included) that wasn’t matching her confidence in walking.   We also made a number or rest stops in beautiful places drinking our water and enjoying the scenery before moving on again.

Finally after clambering about the country side for several hours, we arrived in a small village walked into the first pub we saw and collapsed with cold drinks and our pork pie and fig role dinner.  I’ve never liked Pepsi, but this day a cold pint of it was like liquid gold!


At this point there really wasn’t too much left in us, so I made a target on the map of where we would start looking for a place to put down our bivy bags and we headed off around 6pm hoping that it really wouldn’t be too long before we could rest up. It ended up being a 2 hour slog up hill before we stopped.  But we managed it and it was a perfect location.  A small piece of lawn behind a hedge next to a single horse race track that wasn’t seeing much use.  In fact we were on a big horse racing stable/stud farm.  On another day, if we were exploring the world of horses, this would have been fun and interesting, today however, we didn’t care much other than having a decent place to sleep for the night.

Sofia had done really well on her first day.  I was really proud of her.  Whilst tired, her body seemed to be generally coping, however, she did say her ankles were sore, so I made a note to give her more attention the next day about walking properly.

We were up early the next morning, and took it slowly watching the sun rise before packing up and heading off about 8am.  We hadn’t seen any horses, and as we walked through the main training area, our hearts sank even lower, as still no horses.  So much evidence of them but not a single horse in sight.  It was only as we were coming to the end of the gallops that suddenly we heard the sound of cantering hooves!

What a joy!  Sofia loved it.  We sat for a moment as they turned and started to walk down the track to start the gallop again.   We were told to move before they galloped up again as we were a distraction for the horses so we moved higher up and out-of-the-way with a good vantage point.

Sofia may be doing some horse therapy at her new school so it was really lovely to see her showing an interest and asking questions about the different sports and what they were like.  I think it is now a case of watching this space and see if she develops this.

We developed more of a rhythm as we went, it was hot, so often I was walking ahead and then waiting for Sofia to catch up.  Most of the byways were very over grown, and like the day before, we didn’t see a soul!  it was wonderful, but tough going for Sofia who was nervous of pricks and stings and not being able to see the path clearly to place her feet.  Progress was slow and by the time we were on the Ridgeway trail that took us up Hackpen Hill, we were both pretty exhausted.

Yay! we made it!                                                                                                                                                                                                    (you will note that she is wearing her favourite t-shirt from the Ulysses Club of Zimbabwe! it still looks great after constant use these last 2 years!  contact Salty if you would like one  🙂

In the end we only walked as far as a clear view of one of the circles (and to be honest it looked like the other had been harvested) where we collapse looking over it finishing our water and hitting the pork pies and oranges to find our strength to make it to Avebury.   I was by now starting to feel pain in my shoulder muscles, feet, calves and the tops of my thighs.  Thankfully Sofia was only feeling it in her feet.  But either way, I decided that we should get to Avebury and call a taxi back to the car.  Sofia was really tired, and whilst she was happy to see the circle, it wasn’t the degree of happy she might otherwise have had if she hadn’t been walking for 4 hours already that morning.

By the time we got up and started walking the storm clouds were gathering.   It seemed as if the universe wanted to make sure that I didn’t change my mind and heading home.  But we still needed to get to Avebury.  We were in the middle of nowhere, and Sofia was ready to give up.  I tried to teach her how to march as a way to focus her brain to get through to the end, but she didn’t want to listen only argue and complain that I wasn’t listening to her and it seemed better to leave her to it and a walked ahead as showers of rain started to pass over us.  Perhaps not the most sensible idea as she slowed down even more which I hadn’t thought possible.  We didn’t join forces again until the out skirts of Avebury where I sat waiting for her for about 45mins and I hadn’t been walking fast.


I had stopped to watch her a few times from a distance and to make sure she was ok, and she seemed to be taking 3 steps and then stopping to look at something before taking another 3 steps.   The main thing though is that she made it, and she did it on her own for all intense and purposes, something that she is now proud of.

We (more me really) staggered into the first pub we saw.  I got some cold drinks and then set to task to find a taxi to come and pick us up in the middle of no where and take us to the middle of nowhere, but being Friday the 13th, it took over 30mins to find one available, and many thanks to the lads behind the bar who helped in this mission.  Once the cab booked, the heavens opened in happy agreement, the thunder clapped and the lightning flashed in joy, and the possibility of me ever being braver than my body could handle was washed away with it!


When we got home, Sofia jumped in the shower and came out refreshed and all her ‘pains’ gone.  I on the other hand will be hobbling to days as the lactic acid clears from my calf muscles and shoulder muscles!

This is the second time she has had this lesson that she may be overstating her condition.  Whilst I appreciate that in her world what she is experiencing is a life and death event, I think it is important that she realises the reality that she isn’t even close and proportionalises her response and I do remind her of Peter and the Wolf when this becomes apparent in the hope that gentle repetition will help her to over come it.  I think it is in part about fear and not knowing her own body, I’m not unsympathetic, but she does need to get past it.    The last time was when she screamed like her leg was broken when in reality not so much as a bruise had appeared the following day.   It is something the school she is going to can work on.  I’m so happy she has a placement there!


We travel and I publish our travel experience on Social Media to help raise awareness for Autism, please could you help us continue this effort by making a small donation – Thank you:  https://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498