Tag Archives: africawithautism

Autism: Home visit in Ethiopia

In Ethiopia, Autism found us before we even started looking.  Sofia and I were walking in the high street in Axum when a boy asked us about our T-shirts and told us that there were several children that he knew of that had autism in Axum.  Immediately I asked if it could be arranged to meet one of them and family.

The following afternoon we visited a very small compound of rooms.  One of which was occupied by a mother, her son who was 17 and autistic, and grandmother.  Armed with some degree of interpretation, we immediately started to hear her story.

She had always known that her son had a problem, but it wasn’t until he was 7 that the hospital gave a diagnosis and sent her away with a bottle of eye drops.  No information or support was offered.  Her son wasn’t able to stay in mainstream school, so she tried a school for deaf children, but that didn’t work out either.  She is a single parent, and I asked her about her husband, who apparently is ex-military and disabled so not at home, however, I have since learnt that in most cases the fathers leave, and many mothers are left so support their autistic child as well as any other children.

Needless to say, with out any information and support, it has been a hard journey she has travelled and it is not over.  Her main concern is to find something that will help her son’s anxiety levels which are high and prohibit him from dealing with social interactions of any kind.  Something, anything that will help him, and sadly there was nothing I could offer to help.

Talking to him, he wishes he could drive and have a car and all the normal things a 17 year old would like to have, and yet with autism, it is likely he will never be able to learn to drive and experience that level of independence or social interaction.  A conflict experienced by many on the spectrum where desires and abilities are in-congruent.

We visited 2 schools in Addis Ababa, both charity run organisations, and it was clear that they were struggling to gain political support and in particular expertise and training.  They have self taught from books and battle on as best they can providing excellent care for the children they are able to take, teaching them basic skills and education where the children are able to cope with an educational environment – they are very clear in many cases they are providing help to mothers so that they can go out to work and support the family.

However, professional skills such as speech and language and occupational therapy are a huge challenge, and they desperately need professionals in these area to come from the Europe and the USA and spend time with them until they are more available in their own country.  If you are professional in these areas, please let me know if you are interested in a 6 month/year sabbatical in Ethiopia.

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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.

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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.

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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.

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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!

 

 

 

 

 

 

Part 2 – The Longest Night: Breaking Down in Ethiopia

The sun was going down and I must have smoked 10 cigarettes whilst we waited.  Sofia was quietly playing on my phone, and a nice young guy who taught mechanical engineering at a local college was chatting to me in his best English.  The 20mins wait for the truck was about an hour in standard time, and the signal of its arrival was the sudden flurry of activity.

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The Bike Successfully Relocated onto the back of the Truck
It was a standard transport truck, of which you see many on the roads here, and I became hopeful when something that resembled a ramp was pulled out, thinking that yes our bike would be pushed/pulled up onto the truck.  This hope was soon dashed when I saw it being folded under the truck.

I asked what was happening and was neatly told that they were going to lift it by hand.  Any subsiquent protest from me was ignored as they wheeled the bike out and discussed how it would be easier to get the front wheel up first.  There was really nothing I could do but stand back and watch, and so I quickly whipped out the phone to film as they hoiked it up, with all it’s bags on, with about 10-15 men trying to get the back end up and onto the truck.  It was hard to watch, but they managed it!  I can’t imagine how they thought they were going to do this on a mini bus!

The bike was on the truck  tied down with string (calling it rope would be a stretch, but it seemed secure) and it was time to go.  The driver, a young chap, clearly meant business and I was assured that the road was good all the way to Addis.

Obviously Sofia and got into the cab, the helmet promptly removed from our clutches, I kept saying no, it is safety equipment, but they insisted there was room ( I thought there was plenty!) and so the helmets where secured (jammed) into the bottom of the sidecar.

There was some cuffuffle about seat arrangements, and then it all became clear.  The driver, Sofia and myself and an extra body, all jammed into the truck cab!  Well, if we weren’t getting enough adventure, I’m sure this arrangement was going finish us off!

We said our good byes to the guys who had been so nice and helped us, and the parting ‘good luck’ from their mouths, I can’t say was entirely appreciated on the one hand but made me laugh on the other  (why did we need luck?)

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A terrible picture of Driver and extra body crammed into the cab with us
We hadn’t got to the end of the road when it was clear that we were in good Ethiopian comapany – the Driver and character in his own right already, was already on the phone telling his mates something to this effect:

Yes yes, I can’t talk right now I’m on very important ferengi business (hahaha) yes, I am taking ferengi motocycle to Addis (hahaha) 3000Birr (HAHAHAHAHA!) – you could hear the laughter of said friend on the other end of the phone and words to effect you lucky b***d were probably also uttered – Yes you see I’m important now, bye!

These phone calls went on for an hour or two, with intermittent conversations in broken english along the lines of :

Driver – Where are you going?  (a favourite question in Ethiopia)

Me – Addis – Where are you going?

Driver – Addis

Me – Great!  I’m on the right bus then!

Driver – HAHAHAHA!

This joke had several iterations when it became clear that he actually wanted to know information in the more general sense.

Clearly he was a popular chap and had a string of contacts on the route, as we dropped off wood here, and picked up letters there, bags of stuff, the odd person (extra body got chucked in back as a better english speaker joined us in the cab) The music blarred with Ethiopia’s best talent, food ordered ahead of arrival, and the boys chewed their chat and chatted the night away.

At about midnight, Sofia and I were falling asleep, I think Sofia managed it fairly well, however, the ‘good road’ was only half good, and if one wasn’t holding on for dear life around the hair pin bends, it was a case of mastering rocky roads, pots holes, or simply no road at all, and various animals, people and other vehicles seemingly oblivious of the imminent danger they may be in.  Needless to say, I didn’t get much sleep.

I must have nodded off at some point, as I woke up and checked out location on google maps and suddenly we seemed alot further down the road.  The extra body, despite having chewed a ton of chat was now dropping off, whilst the driver chewed on the dregs left in the bag.  I asked him if he was ok, and he had that classic, over stimualted, clenched teeth wide eyed look, when he turned to me nodding with a smile.  I could have got worried about it, but really I was too tired to care and instead teased him about it for a while.

The hours slipped by, and finally the Diver announced we were in Addis! just like that, our 11 hour journey was coming to an end and the discussion started as to where we were being dropped off.  I had no idea other than some vague directions and, regardless of the hour (clearly my situation could be classed as urgent) I called Flavio, the Italian mechanic.

The truck had a drop to make and in the process of trying to find the location, a stone had got caught between two tyres.  That was when I decided to help with a torch, and realised that the tyres on the truck were completely smooth!  OMG! so glad I didn’t know that at the beginning of the journey!

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The Driver Catches a Kip in the Early hours as we Wait to Make contact with Flavio
The drop done, the Driver pulled over to catch a kip, whilst I was still trying to get hold of Flavio.  Suddenly at 8am, driver was keen to get going again, so they asked if they could take me to another mechanic.  At this point, if Flavio wasn’t answering, he clearly wasn’t helping so I agreed, and sent Falvio a message to say we were now going somewhere else.  Amazing the effect that had, as he texted back immediately to apologise and to let him know how it went.  The driver and his friend, who has been busy arranging things, were wondering why I didn’t call Falvio, and immediately asked his number and called themselves.  These were clearly nice guys and concerned about our welfare, and knew that a ferengi sticking to ferengi contacts may be preferable regardless of the greatness of the place they were taking me.  The call connected, and once it as established that they were calling on my behalf, Flavio immediately said, I am busy! and hung up.

The poor chap was lost for words, asking what we should do.  I shrugged and said he is Italian, he clearly not interested, and lets go to the place they were recommending.  Personally, I was horrified and so glad that these guys had an alternative option at the ready.

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The Sun Rises over the Bike in Addis
It took some time and a round of fresh mango juice on me, when we finally arrived in a semi- shanty town area, down a road that only passes for a road because there is nothing else on it, and is used by cars to connect to main roads.  We stop out side a workshop clearly for bikes as there are many, and the first thing I see is 4 Ural outfits sitting there – I was speechless!  Somehow, we had managed to find a mechanic who actually had some Ural experience!  turns out various people had brought them for fixing, but cost of spares or lack of spares had resulted in them just being left there, never to see the road again.

Now was the time to get the bike down, only this time I insisted we take the bags off the bike, because now it was half the number of hands and actually this could be a more hazadous task.  it was also at this point that the phone had not recorded the loading of the bike, so this time, I made double triple sure that it was recording this.

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Now the Bike needs to be taken off the Truck!
I can’t say the bike was dropped, but there was a moment where it didn’t look good as it rested on the spare tyre and with too much angle, but somehow they managed it, and the video has the appropriate shakes and movement of a camera person who is more interested in saving the bike than taking the film!

The bike off the truck, more good byes, and here we now were in Addis.  At least, we were told, with the best mechanic in town – Mohamed.

I wish I could say our night ended at this point, but next on the list was find somewhere to stay – this ended up with a long walk that took us through a shanty town area and up a steep hill being guided by a young chap from the workshop doing his best to find us something in our price range.  To cut another long story short, mission was accomplished, Sofia was parked and left to catch up on sleep whilst I returned to the bike and started working on a plan.

I’m not going to put too finer point on the fact that as I worked, I thanked my lucky stars over an over.  Never once were we met with anything other than concern, and a desire to ensure we felt safe, even the workshop where the bike now rested, could not have made us feel more welcome and looked after.

 

 

Part 1 – The Longest Night: Breaking Down in Ethiopia

After an amazing experience of visiting the Danakil Depression, a good nights sleep and the best shower in Africa, we set off from Mekele on Monday morning last looking south and to the final part of our trip in Ethiopia.

I was worried about the bike and keen to finish Ethiopia and head down to Nairobi when it could get a thorough service and the final drive (the part that was worrying me) could be sorted out.  Nothing serious, but serious enough that I was now looking to actively avoid any seriously bad roads, so a visit to Lalibela, the famous site for rock churches was out of the question now, as the road to it was really rough.

The road was good and we were making good progress, when suddenly, with no warning I hear a crunching/scrapping sound and a drop in power.  I immediately pulled over feeling the drop in power and the engine stopping as I pulled to a stop.  Naturally my first thought was oil.  Engines aren’t supposed to make that noise with oil.  So I checked it and found that there was no oil!  I had checked it that morning and it was full when we left.  So in 200km we had lost oil, and I could not see any major evidence of a major leak.  So I filled up again, waited for the engine for a bit longer (the crowds were gathered by this point their curiosity overwhelming them) before trying to start again.

When I pressed the start button, the engine tried to turn then jammed. o-O!  I was straight on the Skype phone to Mick, our mechanic in the UK, thankful that as we headed South and 3G internet had been getting better and better out side of main towns.  A short conversation established that the problem was major and towing would be necessary.  We had passed a big town only 15km earlier, so with the help of some of the male observers, we pushed the bike to the other side of the road to pick up a willing tow.

This is Ethiopia, and the people here are always ready to help a person in need, so we didn’t even wait a second when a minibus stopped with an english speaking driver who took us in hand, called a mechanic, dropped off his remaining clients, and returned to tow us to Kodo which was actually the direction we had been heading in.

The boys at the workshop made quick work of establishing that the left piston was ceased and that we should take the bike to Addis Ababa to get it fixed.  Of course, still not realising that I was in great hands, I wasted the next two hours trying to find a mechanic to go to in Addis, and then a truck to take us there.  This is when the low point of helpfulness came, when it was suggested that they lift the bike on a mini bus, strap it to the roof and Sofia and I ride with the bags in comfort in the bus!  I don’t know why I didn’t crack up laughing on the spot, rather taking it as seriously as it was suggested I said ‘Definitely Not!’

I managed to find an english speaking Italian mechanic, who had a friend with a truck that I couldn’t get hold of, so when my activity stopped, I was approached with a new suggestion, that there was a truck the bike could be pulled onto, and take us to Addis.  I had asked the Addis mechanic, Flavio, how much I should expect to pay, he had said 8000Birr, so when this truck was offered at 3000Birr, I didn’t waste a second thinking about it.

Relieved we were now arranged with a tow and a place to go, I sat back and waited taking in the surroundings, and hoping that an African/Ethiopian 20 minutes would be less that 2 hours, as it was going to get dark soon, and the audience were all steadily chewing their way through a heap of chat (a local plant stimulant much like coco leaves in South America) and drinking beer.   I felt no threat from them, but when it gets dark people change, and I didn’t really want us to be hanging around.

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The Crowds Gather Around the Broken Bike – Kid taking particular interest in Sofia

Memories of Sudan

We only left Sudan a week and a half ago, and yet already it feels so distant.  Sadly it is a country of restrictions and I wasn’t able to publish any posts during our time there, so now I am playing catch up and will try to give as much of our experience in one short post.

Top memories included:

Staying with a Nubian family on the banks of the Nile.  It was only for one night, and even though we became the local attraction, it felt like all the people who stopped by to meet us became instant friends even though we didn’t speak the same language!  Our hosts where generous to a fault and will be one of our strongest memories of this trip through Africa.

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Visiting JebaBerkal in Karima was like stepping back in time and exploring an Egyptian archaeology site 100 years ago.  The temples were only half excavated and the one cut in a rock needed a torch to see the paintings on the wall.  Karima itself was a lovely town with a colourful market and is where we spent our Christmas day.

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Khartoum ended up being a 2 week adventure for us and included such delights as visiting a school for autism (will do a separate blog about it), staying with Hiba, the founder of said school, and her family for several days and going to a pre-wedding party that absolutely rocked

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The desert wind was relentless and unfortunately not suitable for desert camping.  We did manage one night, our last night, and Sofia loved it so much she is always looking for an excuse to do it again.  The funniest thing though, was several people passed us and stopped and asked if we would prefer to stay in the local village (at least that is what I surmised) and they just couldn’t understand it when I kept saying no and walk away looking utterly baffled.

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There are many things I’ve not included here that won’t be forgotten, like the USD story and the broken wheel rim, which have otherwise been faithfully recorded in Facebook.

In a nutshell though, Sudan is an interesting place that feels like a bit of a time warp.  On the one hand modernised, yet on the other hand, still some where stuck in the 70s and unable to move forward.  What was really nice was the people. So hospitable!  I have never felt so safe anywhere and leaving Sudan I was keenly aware that we would never be so safe again on our journey.