Tag Archives: africa

A Mazungu in a Mutatu

We have now been in Kenya for almost a month and practically the entire time has been in Nairobi waiting for the the bike to be good to get back on the road. I hope now that in the next few days the wait will be over and we will no longer be mazungus (white skinned) in a mutatu (mini bus public transport)

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The inside experience of a mutatu! blurred as it raced over bumpy roads, and packed to the rafters with people – thankfully it was only a short ride to the local shopping centre!
So what has happened in this last month? From an autism perspective, we have met with a couple of charities in Nairobi. The founder of Autism Society of Kenya and principle advocate in Kenyan government, Felicity, met us for lunch and we found out about the remarkable progress that she has made in the last 10 years in terms of getting recognition for Autism in the Education Ministry, and on the day we met, how she received her first email from the Health Ministry acknowledging the need for a committee to be established to identify the needs presented by autism. Felicity has also been involved with outreach programmes but is constantly struggling to find sufficient funding to continue this work.

Knowing the struggle to get any recognition for autism in Africa, it was nothing short of a miracle to hear her story. She puts much of her success down to her previous involvement within government (from a nutrition education standpoint) which has helped her to understand the process, and effectively identify the contacts, follow the right processes, and use her her existing reputation as an expert to ensure that she is heard. Behind all of this however, is her drive an commitment to establishing an effective support system for autism that springs from her grandson’s diagnosis. Indeed, it was only through taking him physically to the registration office to register the charity, that she was able to convince the registrar that autism was real so that the charity would be registered.

I also had the opportunity to meet (albeit briefly) another star on the autism scene in Nairobi, James. Having worked with children with autism in New York, he returned to Kenya committed to helping families affected by autism. Setting up the Autism Support Centre, James works to help parents by bringing them together, providing information, and helping to apply pressure to get more support for their children. I was kindly invited to attend a parents group on a Saturday morning to speak a little about what Sofia and I were doing. I wasn’t the only speaker, as other parents where also invited to speak with the subject of discussion being Autism and Sexuality.

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A full house of parents in attendence
It was a wonderful experience and really interesting to hear about the cultural challenges that parents were facing and wonderful to see a couple of the speakers being fathers, as well as a number of fathers in the the audience. On this particular subject line major concerns included sexual abuse of the child due to their increased vulnerability, and accusations of harassment (perhaps hugging strangers, or staring inappropriately) in a country where very few people outside the community have any knowledge or understanding and the law does not take any account of disability when considering a case should it be brought to court. The primary message however was hope, hope for the mothers who’s husbands refused to be involved, hope for parents concerned about the future and how they will cope, hope that despite autism, that into adult life there was every opportunity for their children to experience normality – as one parent put it: I am still hopeful that my son will find love and get married, even if it means his wife will live with us I will be a very happy man.

 

All in all, this time in Nairobi has been about interesting people. We have been staying at a major overland rest stop and mechanic shop, and whilst Sofia has been doing her utmost to make up for lost TV time both past and future, I have been regaled with wonderful travel stories – from the guy who was asked for the police report for his stolen car because he may have stolen it from himself, to the couple who seemed to have more than their fare share of break downs and improvised solutions like using margarine as grease, draining a pond of water because they were stuck in it, and a ranger vehicle running out petrol on them as it was coming to rescue them from the bush! But the time has definitely come to leave, as I become more frustrated with the stagnation and concerned about the finances, and judgements are starting to be made about my lack of control over Sofia’s TV obsession by the longer term punters of the Jungle Junction establishment. Judgemental strangers is part of what it is to be a parent of autism, as few people take the time to find out more about why things might be the way they are and even less interested to accept autism as a valid reason to any behaviour that they personally disapprove of. Yes I definitely feel it is time to go! 😀

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Taking the carburettors apart and fixing the issue of petrol flooding into the cylinders

Please donate to help us raise awareness from autism – with the cost of fixes to the bike we are now very low on funds, so please donate even a couple of dollars and it will see us getting a few extra kilometres down the road – http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498

Stuck on the Side of the Road – Again!

Well what can I say, it seems almost repetitive to say we were stuck on the side of the road, but there we were, making a run for the border with a day to spare, and we lost all power.  First I thought it we had run out of fuel, but topping it up, it was clear that it wasn’t.  Then I thought is was compression, and discovered one of the cylinders was full of fuel.

Whilst I suspected all wasn’t well with the bike, I really believed we would make it to the border and didn’t top up the phone card and couldn’t even contact the mechanic to see what else I could do. So every vehicle that passed, I flagged down and asked for a tow to the border, but none were going that far, so the best option was to return to Yebello.  It eventually turned out to be the French tourists in their 4×4 with guide and driver who passed us on the road earlier, who we stopped to have a chat with, who had passed us again and were now on their way back to Yabello for the night, who towed our sorry bike to a place where a truck would be much easier to find should we need one to get to the border.

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We were being well looked after by 4 local boys who helped flag down cars etc to get us a tow – and NGO that stopped was concerned about out location, but to be honest we were always met helpfulness.  Whilst I wasn’t keen to linger, I didn’t feel in any danger either.
Armed with phone credit, I got in touch with Mick our mechanic, who instructed me to clean carbs thoroughly, and check the timing device.  Carbs cleaned just as it got dark, and no improvement in the bike. The next morning, I checked the interrupter and that seemed fine too.  So without further consultation, I arranged a truck.  Getting across the border was a higher priority now.

Truck found, price agreed, I thought we would be on road to Kenya, but 3 hours later, we found ourselves outside the house of the local transport official where her mother was persuaded to allow the driver to complete the necessary documents and sign it in her absence.  The legality obviously questionable, but when you in a hurry, you gotta do what you gotta do.

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Searching the back streets of Yabello trying to find the transport officer who wasn’t answering her phone!
Finally we were on the road to Moyales with Ethiopian folk music quietly playing in the back ground, whilst I tried to ignore the vulnerability of the situation we were in terms of crossing the border handicapped by a bike that didn’t work.

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Yay! we are in Kenya.  The photo doesn’t show it but by this point of travelling 5 days of which two days off road and breaking down and trucking, Sofia’s last t-shirt looked like it had been washed in a dried out river as did all her others!   I wasn’t actually able to get washing done until Nairobi!  
As soon as we arrived, with 2 hours to spare, the haggling commenced on how much for a bunch of guys to get the bike off the truck and local fixer/guide/helper/money changer extraordinaire made himself known and pointed me in all the right directions to documents stamped, fingerprints taken and photos logged.  Surprisingly, Ethiopia customs and immigration processed us quickly, and by 4.30pm I was encouraging the bike pushers to push harder to get the bike up the hill to the Kenyan customs and immigration.

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Parked out side the police station right by the boarder gate where I worked on the bike for a day.  The policemen where really nice and kinda took me under their wing a bit, making sure I got a decent mechanic, wasn’t over charged, and shooed away people if the crown got too big.
Finally we were in Kenya, and a feeling of safe in terms of visas!  The next day, I worked on the bike, still on the side of the road.  I sent the tank off to be cleaned, double/triple cleaned the carbs, and changed the oil yet again.  So back to the timer, and found that it had moved about half a cm.  Right on the border of Kenya and Ethiopia as not the place to find solutions, and despite the best efforts of the local mechanic, he clearly didn’t have tools or the right experience, and so another truck was arranged and it was time to go the Jungle Junction in Nairobi where a good mechanic and a great location beckoned us.

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Crossing the Equator on our way down to Nairobi – in the back ground is the truck carrying Sofia ( who was tired and sleepy and not impressed with the occasion!) and the bike.  

 

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.