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’.
I really didn’t have a plan or even an idea of what the end of the trip would look like, but some how in the final two weeks it all started to fall into place with the key issue of bike transport resolved with Econotrans. With the help of Antoinette who heads up the local branch of Autism SA, in the couple of days we were in East London, transport was arranged for the bike to Cape Town courtesy of Kargo, ‘the’ national logistics company. Flights arranged and a week after arriving in East London SA, we were landing in West London UK.
As part of preparing for the journey we had moved out of our rented house and into a caravan, and on return, the caravan was wheeled out again until we found a permanent address. I thought this would take a couple of months, but after a week and a half, I was done with out-door life and creature comforts were calling me very loudly. Again, thinking that it would take time to find somewhere we would like, I was surprised that the second appartement we saw was perfect and empty and a week later we moved in.
It was strange having all our stuff out of storage, and so much of it as well – one of the wonderful side effects of travelling for a long period is that you let go of material attachments and keep only those things you actually need. So, as I started up packing boxes, I started throwing stuff away. I would say about three-quarters made it down to the dump. Of course I have kept a few sentimental items, but even most of my books made it into the trash, and I love my books.
The bike arrived in port a few weeks after us, and Mick took it straight to his workshop to give it a work over and MOT so it could be taxed for the road. The list of work was long, and mostly associated with the wheels which had become a main issue at the end of the trip. The engine was fine, but the timing had been set incorrectly by the South African mechanic, and the gear box is having to be reworked as the efforts of the South African mechanic made the 3rd gear issue we experienced in Ethiopia return. The side car alignment was also incorrect as well as the rear wheel alignment – the two may be connected, an expert would know, sadly the issues they created all appeared after the bike’s ‘overhaul’ in South Africa. All in all, it seems sending the bike to South Africa for an overhaul was a massive mistake. Whilst there may have been pre-existing wear on the bike that may have contributed, that they didn’t make note of it and warn me of any potential future problems after releasing bike leads me to assume that there were no potential issues other than those that they had created. And with out a doubt, a missing collet and a broken universal joint, incorrect timing and gear box problems would have all been avoided if the bike had not been in their care.
Sofia has settled down really well since moving into the apartment and started school the week after. Her emotional well being is remarkable, and even now after 4 weeks, she is still positive, optimistic and looking ahead. I hear last week that she will often apply her travel experiences to what she is learning in the class room which is wonderful. I had originally wanted her to go to a more specialist school and had stopped the appeal process because I couldn’t find the mental space to focus on it whilst on the road, so I was really worried about how she would cope being on a large campus with a lot of students. I’m please so say though that the special unit to which she is attached is making sure that she is fully supported in finding her way around and ensuring that she uses the unit as base between lessons.
On a personal level, the change in Sofia has been something I get to appreciate every day. She is no so easily upset by change, personal hygiene has improved, contributing to the house by doing a few chores is no long a world war 3 scenario. Generally her fight with me is 20% of what it used to be and I would say, it have moved into a more normal range of what you would expect of an 11 year old girl. I am so proud of her, and every second of the journey we have taken across Europe and Africa has been worth every ounce of increased confidence she feels in herself and every inspired effort she makes to challenge herself.
For my part, I have not settled so well. Once the first several whirlwind weeks of our return died down, I felt myself left wanting and not entirely sure why. The sense that I was living in the real world and now had to return to a surreal world was confusing, and being at the Overland Event saw me starting to plan another trip with the idea of being back on the road in 6 months. I had heard from other travellers about this, but I had not expected it to be so overwhelming and such a fight to redefine my identity. None the less, I started to write, notes mostly so that I could start to get to grips with the story we had just lived. A couple of weeks ago I found a starting point and now the first draft is under way. I am still struggling to make sense of on my new static identity, but it is not nearly as distracting as it has been, and the more immersed I get into the book writing process, I’m sure it will eventually dissipate.
Going forward – I hope to post photos with stories of our travels, some might make it into the book, but many sadly won’t and yet still need to be told. I hope you enjoy them and thank you for continuing to follow us. We are still raising money through Africa With Autism (see donation links in the right column of this website) – I’ve not decided on what we will do with the money just yet, but will keep you posted of any progress on that front.
As the 3rd month of planning our trip draws to a close, I can’t help but reflect how far suddenly we have come since January!
This 3rd month, though starting slow, suddenly shifted up a gear when I finally passed my motorcycle test mid month. Two clutch levers, a broken indicator light and a few scratches later, it finally happened, and my instructor, Mark at M&C Training, smiled through it all, giving me plenty of grief along the way to make sure that by the time I passed, I really was a safe rider on the roads. What a star!
It was with this pass that gears changed on the project with JustGiving finally sending me the documentation to set up the charity, the press release going out and sponsorship, more by accident than intention, suddenly coming into the spot light. Sponsorship is a whole new territory for me. I obviously see the best in what we are doing, but so glad that Richard at Trail Quest was on hand to put me into the right perspective and lead us in the right direction. All this whilst my head was full of flu!
When all was said and done at the end of last week, I am pleased to announce that ADVMoto is now sponsoring us; we are going to be featured on Adventure Bike TV several times, who will also feature updates during out journey and help with editing for YouTube posts; Overland Magazine is setting up a radio station this year dedicated to adventure and have asked if we would like to feature regularly during our journey with updates.
So things are generally moving along well, and looking forward to going to the Overland Event in June and meeting lots of people, and hooking up with the team there, as well as Rev’it who have also expressed an interest in sponsoring us.
On the Sofia planning side, we have hit a slight snag in that it is clear that she will not cope well with a permanent place in a mainstream school, even with support. So now the planning for secondary school, which she will be entering on our return, has also shifted gear as I look for a suitable placement for her, and attempt to get as much of the application process completed before we leave. It may be that we don’t know the results before we leave, but will have to stay close to what is happening whilst we are away, to ensure we can get as much planning and prep. done with Sofia before we return. A really special thanks to her school, who are just an amazing support.
So we go into the month of April hoping to secure a bike with sidecar and raise money through sponsorship! This project is gaining a life of its own, so I am excited to see where we will be in a months time and what my monthly update will be saying.
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.
And 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.
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