Travelling With Autism: How is Sofia Coping?

A question I am asked most often since starting the journey is – How is Sofia coping?  I have tried several times to write a post, however, I always ask Sofia to read it and agree to it being published and I hope this time we get a thumbs up.

My approach with Sofia is to always keep her informed with what is going to happen, and be repetitive about those things that may be particularly difficult for her.  The first instance was the drive across Europe.  I knew that the time of year and expense would mean we had to push through with long and sometimes difficult driving conditions.  Whilst the weather was mostly good for us, there were a couple of days where it was particularly challenging and Sofia was able to recall my words of warning and explaining the necessity to push through and not prolong the pain.   After 10 months of planning, I think her desire to get to Africa supported her immensely, and I am so proud of how she handled herself.

Grumpy Weather for a Grumpy Day – but Athens is still one of her Favourites

Cairo was very difficult for Sofia to adjust to, in fact I can’t say that she every really did.  Museums and sites, normally crisis centres, suddenly became a refuge and will probably be on the only time we will enjoy sites and museums at leisure.  As part of her coping strategy for this journey as a whole though, Sofia had devised a new journey to take after this one in a couple of years, involving horses and Asia.   So now she was open to try riding, something she had been previously nervous about, and it as a pleasure to see her wanting to learn a new skill.

Overwhelmed by the time we got to Alexandria, Sofia became withdrawn and ill.  It wasn’t until we were in Hurgada, that she finally had time to recover her energy and be ready to continue south.  Her support system on the bike has been music, and one of the things I was hoping to see develop and help her on long journeys, was the ability to look at the world outside of the environ of the side car.  Through Europe I was drawing her attention to things like landscape or differences in house building styles, but it was our journey to Aswan where a Greater Spotted Eagle flew in front of us for about 20 seconds, that she slowly started to take real notice of what was happening around her.

Horse riding in Giza

With this break through, I started to introduce her to the idea of navigation.  Sofia had been very resistant to the idea, but once I knew she was starting to look ‘outside’ that she would be able to start feeling a degree of success.  It was in Sudan, leaving Gondola with only Google maps as a guide, that she had her first experience of navigation.  Really at this point she was just holding the phone for me, but in that way she became directly involved.  So when we arrived in Khartoum, I asked her to start giving me information about when the next turn was, and to watch the little dot, which was us, follow the blue line of our route.  She did really well, and since that time, with lots of trail and error, she is beginning to learn the process of following the route, recognising changes in direction, and is now slowly starting to process it in a way she can communicate which is turning into recognising the communication that I need to take the right action.    At the start of the trip, it was too overwhelming for her to even follow our progress, now she is becoming and active part in making the journey happen.

Photography is a problem for Sofia, whether it is photos being taken of her, or taking photos herself.  This whole area is something she is resisting along with a desire to not have photos published.  As you have seen most photos will be with her helmet on, as I try to compromise, and everything written about her specifically is only published with her approval.  I think it is important that she feels a sense of control over how much the world knows about her and sees her.

Helmets provide good cover from the Camera!

Since arriving in Ethiopia, children in particular have been very curious about us and especially Sofia.  Sofia has found this very difficult to cope with this as she doesn’t feel any sense of control over the interaction.  We have had a number of stressful moments, and at such times, I ask her to stay close to me and I become her barrier between them and her.  Over dinner a couple of days ago, she began to reflect on she felt like such a stranger in Africa, and I suspect this may be largely because instead of her being able to seek company, instead she feels she has to chase it away.

On the whole though, Sofia is enjoying the journey immensely.  She will say she misses home, and that she wants to go home, which I think is understandable.  However, these times tend to occur when we stay in a place for longer than a few days. Once we are back on the road again her wanderlust takes over and she seems to settle down again.  Yes we have had our relationship ups and downs, and autistic obsessions and misunderstandings are our constant companions.  But for both of us, our over all understanding of the role it is playing in her life is becoming clearer.  And whilst that may not mean a huge about to her now, I can see in the future that this understanding will faciliate her to accept challenges as an adult.

I am enormously proud of her and the accepting of new personal challenges she is presented with, whether it is learning navigation, or taking a risk and going to see a volcano before knowing what to expect – she has exceeded all my expectations.

Post Script:  Yay! this post has been approved!

 

 

 

 

 

 

5 Months to Go (ish)

Life is moving so fast as the moment, that it is all becoming a bit of a blur!  With in that blur are some key things that have changed in the plan, some for the betterment of the trip, some that will make things a little more challenging.

The Overland Event

The biggest impact on life right now is the decision to start spending time in a caravan.  The story of how this came about is a long one, but ultimately, the need to prepare Sofia for life style of no immediate access to TV and internet comes to the forefront as she will need to start to find other ways to occupy herself.   It will be a huge adjustment for her and one that is better to happen before we leave when I can give her the attention, than when we are on the road and I have a million things to focus on.

Safari through the New Forest

 

The plan has changed in other ways too, not least because there is definitely an escalation of ‘trouble’ in the world.  I certainly expected at some point that Egypt and Turkey would be more directly subject to events, however, I believed that would be next year, long after we have past through.  The issues are still mild in both those countries, however, the a yellow flag is raised for me and so not only have I been looking for alternative boats to take us across the Med but will look to seeing if we can bring the timeline forward a little.  Either way, I plan to have a definite date of departure in the next few days, either with a pre-booked crossing or a plan to arrive in port (Italy or Greece) and find a way across when we get there.

Encouraging Sofia to look and see!

One thing I am certain of is that we will not be cancelling as I fully intend to we get through before any serious escalation occurs.   And as happens with changes like these other aspects change to meet the requirement.  The best one being the school I would like Sofia to go to on our return, who have started their assessment process earlier initially to ensure that we would be ready for December, but clearly this will allow and earlier timeline to occur as well.

Please donate http://www.gofundme.com/africawithautism

If you are a UK tax payer, please donate here for Gift Aid http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498

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Only Seven Months Left to Plan!

Yes, there are only 7 months left to plan!  I don’t know if I’m super excited about leaving, or super terrified at the prospect of everything that still needs to fall into place in this space of time.

The main thing, however, is that we now have our bike (see post:  Transport has been arranged!) and in one sense I feel like we are ready to go, that all the things between now and December are loose ends that need tying up.  If only it were that simple!

Another achievement of the month just gone (feels more like evaporated) is that the National Autistic Society have endorsed the project and we are now going to donate excess funds raised for the project to them.   I am really happy about this, not least because Sofia and I have benefited enormously from the organisation.  Without the support they provide through courses like the ‘Early Bird’, and the local support group which arranges coffee mornings and special trips, I would not be here today talking about taking a journey with my daughter across Africa.

Certainly when you are a parent of a child with autism, nothing can quite equate to having the opportunity of meeting other parents who know and understand exactly what you mean, who don’t judge your child, and will always be ready with ideas on new ways of looking at situations that might help with understanding and finding solutions.

With these two outcomes this last month, I am hoping it is a down hill ride to December.  We still have lots to do in terms of raising sponsorship and donations, and will we be selling window stickers at a biker haunt near you over the summer.  These will also be available on our GoFundMe page – there are no limits to where I can send one!

Still to come is the bike getting a paint job, and we need to start readying it for the trip.  Thoughts about petrol carrying capacity weigh heavily on my mind these days and so a new more detailed level of planning needs to start taking place. Maintenance training will need to be done soon as well, so far I have only topped up the engine oil, apparently there are 2 other oil wells which take different oil, and I can’t even find them at this point.

I have to say though, all is working out perfectly.  Even more so now that we have the bike and sidecar.  Sofia loves riding in the sidecar, and I love driving it, so with these very big boxes ticked, I am now certain that we will not slip our leaving date of December, in fact, in the coming month I hope to set the date specifically and start to work on our launch location.

In the mean time, please donate £3.50 (£3.75 international) and get your own window sticker to show your support.   http://www.gofundme.com/africawithautism

 

 

 

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OMG! What to Choose – BMW or Ural?

It’s no secret that I am coming into the motorcycling world a complete noob, not to mention no prior deep interest in mechanical terminology like ‘horse power’ or ‘cylinders’.   To me if a machine works, use it, if it doesn’t, get a new one.

Suddenly with this project, all this stuff matters, and not only that, advise given is to try out lots of bikes and get experience and build a preference.  Erm, with no license, this is hard to do.  So I have followed a journey on cold facts, and interestingly, in many respects, I am not sure that preference would have helped me make the right choice, only an emotional one.

The first thing I learnt very quickly was that the bigger the numbers the bigger the bike.  I also learnt very quickly that not all motorbikes have chains, like bicycles.  This was a fact I latched on to quickly, because I know about chains on a bicycle, and when it comes off, it can be a fiddle to get back on – heaven knows what that must be like on a motorbike!    The other type of motorbike has a drive shaft which sounds much simpler to me, safer, and less likely to go wrong.

So looking at bikes with drive shafts, I immediately honed in on two motorbikes that are designed as adventure touring bikes with this configuration – the BMW 1200GS and the Ural (all their bikes have this configuration).

BMW 1200GS with a sidecar attached

You really couldn’t get to bikes more opposite on the spectrum of what is available.  Its like saying that the choice is between a Bentley and Lada car (if Lada’s where still in production) literally.  The BMW 1200GS has every comfort and convenience accounted for on those hazardous roads around the world.  The Ural is a solid Russian bike that hasn’t changed much since inception in the 1930s, it was built to last.  It has only been in the last year or so that they have included fuel injection as standard, a modern technology that now means that ‘software’ has finally made it onto the Ural.  Thankfully the Ural, much like Skoda did in the past, has looked outside of its knowledge base for these upgrades, and in this case I believe that the fuel injection has been supplied by Ducati.

So there we have it. Large choice, suddenly diminished to 2 bikes.   I chose the Ural.

1- Sidecar fitting on the BMW changes the standard structure of the bike so that it is no longer supported by warranty.  This is actually a very important point.  I know many say that the BMW will never break down, especially to the degree where BMW would have to get involved.  Personally, with my daughter in tow, I’m not sure I want to take that risk and ride into Africa on belief alone.

The Ural on the other hand is specifically designed with the sidecar, and with the fuel injection upgrade, they now provide warranty cover.  All thumbs up with Ural.

2 – Fix-ability is a major issue with the BMW.  The motorbike has so much technology now that really you need to have diagnosis tools, software programming degree, and 5 years working in BMW to even have a chance of fixing anything more major than a flat tyre on the road.

Ural Gear Up

The Ural, however, is still as simple as it can be.  Not as simple as the carburetor version, but you still have a good chance off fixing most problems with the bike on the road, and if you can’t do it yourself, you can probably find someone with a spanner who can. Strike 2 to Ural.

There are other minor graces of the Ural over the BMW, but needless to say, to me, travelling with my daughter in some remoter areas of the planet, my confidence will be much higher with the Ural.  Ok, so it isn’t fast, it isn’t sexy, and it doesn’t have 5 suspension options controlled by a panel on the handle bars, but it works, it gets from A to B, is a lot of fun and if it lets me down, there is a real chance of being able to fix it.

Thank you to everyone who has given me advise over the last few months!  I really couldn’t have gone through this process with out your input.  If the sidecar wasn’t in play, I think the BMW would have been my top choice.

Second month of Planning – By hook or by crook!

It has now been 2 months since I seriously started working on this project and I’m still going strong.  However, this doesn’t quite give the picture of what it is like to actually be planning a project like this.

My main focus this past month has been two fold, firstly to get my motorbike license and secondly to start sending a press release out to the local press.  On both these tasks I can’t exactly say I have met my target!

The motorbike testing has somewhat stalled at the moment.  In the UK the test involved a theory test, which I passed, a Module 1 and a Module 2.  The Module 1 is the control test that takes place in space specific for the test and set up with cones.  One follows a sequence of exercises (exactly the same every time) which test slow control, stop, speed and avoidance.  Sounds easy right? WRONG!   well for me anyway.   Of course I have ability to pass it, I’ve practiced it perfectly enough times, however, I seem to have a psychological issue with tests, and seem to be making silly mistakes.  Of course it is all good extra experience, so I don’t complain, but really would like to get on with the Module2 road test and get the licence so I can move forward with my plans.

I was hoping to have my license before sending out a press release, however, as this happened yet, I’ve been working on it anyway.  We visited Motopodd , who have since offered to sponsor us with training, to at least have some pictures with us and a rig, looking ready to go.  It was also an ideal opportunity to bring Sofia a step closer to the reality of being a monkey (term used for the the person who sits in the sidecar)

We got some lovely pictures on the training bike, and also some little video clips, my favourite of Sofia having her first ride in a side car which I will post at the end of this blog.

The press release is now in review and will hopefully have it out to local press in the next week.  I can’t keep waiting on the test.  I will pass it, but there are so many aspects that need to happen in this year of planning, I have to push ahead so I don’t loose valuable time.

My out look on all this, is that life is always working out perfectly and exactly the way it is supposed to.   I know that this trip is going to happen, so when time lines start to get a bit mixed up like this, then I will find out that it is precisely what needed to happen to get a result I really want for this trip.