Tag Archives: special needs

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’.

#autism #autistic #autismawareness #Canada #camping #bikersofinstagram #bikerkid #bikergirl #bikers #motorcycle #bmwgirl #bmwadv #bmwgs #bmw1200gs #bikelife #bmwmotorrad #advlife #adventure #travel #advbike #touring

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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.

VirginMoney Giving 

Paypal (coming soon)

 

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.

 

The Battle for #Nordkapp

When ever you watch a movie, there is always that point where the protagonists are in a house and common sense says that one would leave, but they never do, they stay and invariably the worst happens.

I wonder sometimes if Norway is our house, and we should have left at the first sign of trouble, but like those characters, we ignored all the warning signs and are now paying the price!

It started off so beautifully.  Wonderful weather, great roads, and awesome scenery.  It was on our third day, heading towards Bergen, that the first sign of trouble began.  Rain.

Not normal rain, short heavy showers, or light and long, but heavy and long, like monsoon in India.  At these degrees north it is only warm or hot when the sun is out, put some clouds in the equation, thick low, freezing clouds, and it is considerably cooler.

Day 3

So on that 3rd day, we rode the high mountain passes when the snow never fully melts at super cold temperatures and intermittent rain, and descended into monsoon lower altitudes that drove us to find proper shelter for the night.

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Day 4

I checked the forecast for Bergen, which was only another 100miles down the road, and it was heavy rain for the next 3 days, so I made decision to head back to the main road to head north towards our goal of Nordkapp.  The weather agreed with us, and we had a lovely ride in the sunshine on our 4th day, stopping at a campsite for the night after having an altercation with a truck on a hair pin bend sending my nerves in hyper drive and draining all energy from my soul to cope with finding a wild camp for the night.

Day 5

we only covered about 150 miles in large part because of traffic. July is holiday month for Norway, where 80% of the working population are on holiday (for Sweden it is August) and entire factories will close down.   The vast majority of these holiday makers have camper vans or caravans, and have to where to go quickly as they have seen it all before, Norway being their place to holiday every year.  A camper will travel at about 40-50 mph, slowing down over time, and then speeding up if there is a straight section in the road.  They have no consideration that a line of about 100 vehicles including lorries has built up behind them, and that the road is the only main road north, or rather very few showed consideration and gave opportunities for people to pass.  Throw in some really bad weather, and average speed will drop dramatically!  The weather was cold and cloudy and rained 60% of the time and again we stayed in a campsite that night.

Day 6

The following day, the heavens opened so we packed up early and set off.   We must have been on the road for about 5 hours with the rain pouring down the whole time, but only travelled about 100miles that day.  In part the weather, but also the traffic was now particularly slow and we were taking a stop about every hour to warm up with some hot chocolate.

So drenched again, we pulled into a place and got a room to dry out including all our camping kit.  In the process my jacket got oil paint on it as they decided mid-season was the best time to paint with no signs up.  They refused any compensation, and whilst ‘you can hardly’ see the paint on the jacket after they scrubbed it, it is none the less damaged and I insisted that they must take some responsibility for it.  But we don’t have time to hang around and argue about it all day so eventually we hit the road and got soaked again!

We were lucky this time to find a really cheap cabin by the side of a river, however, again the distance travelled was only about 150miles.

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Day 7

Today I had to make a decision – do we cross into Sweden or battle on with Norway.  I had been scanning wind, satellite and rain maps for the last 3 days to determine the direction of the weather systems, as I didn’t want to have the weather follow us and it was clear that the forecasters had been caught off guard as well, as the forecasts were rarely correct!

It was clear the weather would move west so we made the run for Sweden through cold wet mountain passes and once again we were utterly drenched!  However, this day was better than the rest because for the first time I had some conversations with people!   Norwegians are very closed and not prone to being interested in strangers, no matter how exotic they may be (a GB number plate is pretty exotic in these parts!), and even the foreigners vacationing are so wrapped up in their own world they are not interested in others either.  For me this was a strange as travelling people, in my experience, tend to be more open and enjoy the experience of meeting others on the road – yet even my attempts at engaging conversation seemed to fall flat on its face.

All this changed when we entered Sweden.  The Swedish loved talking to travellers!  and even the travellers seemed more open.   So after over a week of what felt like total isolation in our own experience, the world started to open up.  That night, soaked again, we stayed in a cabin.   Our costs of this trip had now officially spiralled out of control!

Day 8

The weather was splendid!  Sunny day, beautiful roads, and hardly a camper van in sight!  We covered about 450 miles and could have kept going, only I found a beautiful camping spot by a river at about 7pm despite its swarm of mosquitos and some sort of fly.  Luckily some finnish fishermen were camping near by and lent us some coils which had a magical effect!  None the less, I did not sleep well as the ‘brightness’ of the light at night started to bother me.

We passed the line for the Arctic Circle this day, and a big tick in the box of goals as Sofia wanted to go to the Arctic Circle.

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Day 9

Our final push to Nordkapp!  the weather was great, even at Nordkapp where the winds promised to be light, which was a relief after one altitude pass on the way had such a howling cross wind it was a battle to keep hold of the bike!

Turning on to the E69, the Nordkapp road, we were filled with excitement, we were finally there, and only a couple of hundred kilometers to go – the sun was shining and the winds were light!

And then disaster struck, the bike broke down!

Rescue finally arrived 4 hours later, and when I went to show the mechanic the problem (the engine cutting when there was no throttle applied) and the engine idled no problem at all.   So I drove to the garage with the truck following, thankfully in the direction of Nordkapp rather than away from it – but still, all hopes of making it to the furthest point North on the European continent were by now dashed.

The bike made it to the garage, however the vibration was really bad and the power was weak, this was not a simple fix and the mechanic advised that BMW were the best placed to deal with it – BMW whose closest dealership was in Tromso, some 600km.  So the discussions began with the insurance company, that have become more ludicrous as time has gone on which is for another post, however, just in this evening alone – they seemed more determined to pay for a Taxi to Nordkapp 35km away and bring us back the next day, than pay for our accommodation where we were even though is would be cheaper – thankfully the battery went flat on my phone before we came to any conclusion!

Once the phone had some charge, we waited for them to call – they didn’t – I called them – there was no answer.  Finally we gave up and by this time had booked into the local hostel (a shocking 80 Euros for one night is the cheapest accommodation in the area!)  only to have the garage owner offer us a car until things got sorted with the Insurance company!  What a star! So we dumped our stuff, got something to eat (we hadn’t eaten since 10am that morning) and with 30mins to spare, made it up to Nordkapp so see the midnight sun!

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After such battles, our elation was palpable – and Sofia did something she has never done before, grabbed me round the shoulders for the selfie photo with a big grin on her face!  It is the first time she has ever done that, normally she hates to be hugged and it is extremely rare that she may hug, and even then she hates being hugged in return.   So the picture of us grinning a is a particularly special one at is denotes not only a shared experience and achievement, but that she felt that experience as a shared one and expressed in an appropriate way 🙂

If you enjoy following our travels, please make a donation – We are travelling approximately 8,000 miles –  £5 will help us cover 50miles, £10 = 100miles  

We don’t know the costs for fixing the bike yet but any help towards that will be GREATLY appreciated!

Donate here:  http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498

 

A huge ‘Thank You!’ to Rev’it who sponsored our riding gear!  It has done a tremedous job in the weather we have had to deal with!

Our Jackets and Jeans were the Horizon range

Our boots – Outdry Discovery

The night before launching The Crooked Foot Adventure

Until about a week ago, I thought everything was tickidy-boo – and then we took a day out on the bike with some cameras so I could work out how I could use them more and bring you more film footage.  (our Youtube Channel – https://www.youtube.com/channel/UCdwRUgfgP2LG1rCokiCt4Gw)

The main problem that arose out of it was that my navigation solution was unreliable and so a new plan was put in action to buy a Garmin – sadly the blue tooth into earphones are deliberatly over priced, so settled with one without and hope that it will work out ok.  At the very least, I am hoping that with Google maps and a Garmin, I will hopefully start feeling a little bit more confident about driving through cities and major intersections with out heading off in the wrong direction!

The other issue was the charging solution for devices on the bike doesn’t seem to be very good, so as the charge socket is european I’m hoping that I can sort that out on the road.

If you had asked me after that ride how I felt about riding a motorbike, I probably wouldn’t have sounded too confident.  I was off my game that day, but to be honest, before that, I was still feeling like I wasn’t quite nailing it well enough to feel good about taking Sofia on foreign roads.   It seems a bike service, more than a ‘me’ service was the issue!   A valve adjustment, new chain, break pads and tyres, and BOOM!  I’m riding a completely different bike!   It is amazing how a bike that isn’t on top form can affect your whole experience of riding.   Returning from Mick’s (the mechanic) workshop yesterday was the best ride I’ve had so far on this bike.

Am I feeling ready for this repsonsibility of driving with my daughter as pillion? I am now!  so much so, for the first time today (after the stresses of last minute changes to my insurance provider)  I started to feel butterflies in my belly.   Even more so seeing Sofia come home from school looking how I felt – excited!  🙂

 

If you enjoy following our travels, please make a donation – We are travelling approximately 8,000 miles –  £5 will help us cover 50miles, £10 = 100miles  

Donate here:  http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498

 

 

 

 

 

 

 

 

 

 

Autism – Just Roll With It!

25% of this project is planning it, 25% is actually taking it, and 50% of it will be a journey with autism. Yes that is a big chunk of the trip, given over to working with a different way of being and thinking.  However, this is our life, and it doesn’t feel like 50%, and certainly not 50% of posts are going to be about it.   However, because it is such a big part of the journey, it can’t be ignored either.

One of the major deciders for doing this challenge, was because it seems to be a perfect time to do something like this with Sofia.  Along with this was a special needs education review, where myself and the school agreed that we could now ease Sofia into the mainstream and she could spend her final junior year in a local school, before going to high school.

The process of easing Sofia into the mainstream had already started, however, this term it ratcheted up so that almost her entire day was in the mainstream, receiving the same level of support that she might expect next year.  I don’t believe any of us expected the result of this.

I have had reports of her being bullied, of her ‘bullying’, of Sofia having meltdowns, and worst of all, biting another child, something that has never happened before.  Last week, I let the school know that I wanted to discuss rolling Sofia back into the special unit at parents evening, which happened today.

I don’t know what I really expected when I sat down with the group of special needs teachers and learning assistants.   I don’t even know what I was thinking about in the long term.  I had given them time to think about it anyway, and they had taken that time to discuss and be clear on their perspective.  They responded in total agreement, that it wasn’t working out as we had hoped or expected.  That her placement continues with the special unit until we set off to Africa.  That I will have a preparation issue on my hands, because their recommendation is that she has a placement in special needs school for high school.

Hearing this was like a bucket of cold water without getting wet – I so wanted it to work out for her and to see her carve out something for herself in mainstream.  On the other hand relief (hence not wet) because after the last 2 months the idea of her being in mainstream for high school is terrifying.  Academically she is just about keeping up, but what we have learnt without a shadow of a doubt is that her social comprehension will not develop at a rate that will make it possible to integrate into mainstream.

cropped-collage-2.jpgAnd this is the story of autism, never giving up, always reaching for the best, and being sensitive enough to know when to pull back and to set new goals.  The new goal here is that she gets the placement that is right for her to come back to in 2016.  It is a goal I am happy about because I know that achieving it will be a happier child more successful child than the alternative.