The most common two questions I am asked at the moment is, How is Sofia doing in her new school? and How am I doing with this big change?
With the first, Sofia is settling in really well. I have to say that all the travelling she has done, has made the transition really easy for her in that she has the confidence to adapt to her new environment and make the best of it. That is not so say that she is not confronting many challenges, but she seems to be happy to embrace the challenges and for the first time in a school environment, has the opportunity and space to process and recognise those challenges and learn something from them. It is a huge step for her and I have to say that she is making me enormously proud.
For my part, it has been a surreal experience. So reconnect to myself, to remember who I was and what my goals were in life and re-evaluate them in the context of today is quite a journey, and one that I feel can’t be rushed. The conclusions I have drawn are that I will ride the motorbike for my own pleasure and will no doubt seek my own adventures where I can, but I may or may not publish them as part of Adventure with Autism, I don’t have a feel for it yet. I will however be organising a ride from Lands End to John O’groats (the LEGO Adventure) next Summer for Sofia, which will no doubt take us via Wales and Ireland.
Adventure with Autism in the mean time will remain relatively quiet, as it seems to do during the winter months. We are just about to leave for a proper holiday (for a change!) tomorrow on a cruise, and it will be an opportunity to recap the last four years since the last time Sofia took a cruise which started off this big travel adventure for her. I’m not entirely sure how I’m going to film/record it, but we will be going through all the photos I have and reminiscing. Hopefully catching as many of Sofia’s memories before she forgets them. The results of this effort will no doubt leak into social media over the winter months so watch this space!
I’m not shy to push the envelope with Sofia to help her move forward in life, to learn through actual experiences and to gain confidence for more. One of the aspects of this is related to physical activity.
Getting Sofia to be physically active has been extremely difficult. In Africa it was wonderful to see her come out of her shell a little in this regard. When we were preparing to leave she started trying to tie her own shoe laces, by the time we were in Greece she started using a knife and fork correctly, and by the time we were in Sudan, she was starting to take little risks related to climbing which continued to expand for the rest of the trip.
In Europe too, a little of this returned when confronted with bunk bed ladders, where out right refusal didn’t happen (as is normally the case) but this time a brave ‘I’m going to try, please help me’. Try she did and succeeded much to her delight and she had tried enough times that she by the end of the trip she was starting to feel confident.
So when she started home schooling I decided I would try to make walking more of thing for her. Short walks in nature when the weather approved so that she would not feel any resistance. She enjoyed this, or rather she wasn’t objecting to go out for one, so I started thinking bigger and wondering if it wouldn’t be a good idea to do a proper hike with wild camping, the works.
Long story short this came to fruition this last week. Inspired by a group of Facebook of women who are getting out there climbing, cycling, hiking, biking, or what ever adventure big or small (Adventure Queens), I finally put a plan together.
39km around the Wiltshire country side, with the sell factor being the crop circles. Sofia loved this idea!
To be fair, I was pretty sure, considering our state of fitness, that we would likely not manage the full trip, and that some pain may be experienced and that Sofia may at some point, fall out of love with the idea completely. But as with all the travel we have done, the whole point is being out there and having no choice but to deal with her issues be they internal or external and she will never learn how to deal with them if not presented with them experientially.
And so we set off on a lovely sunny Thursday afternoon in middle England. Our first stop and where we would leave the car, Martinsell Hill. This hill directly overlooking a crop circle that only appeared last week. Sadly, however, the farmer had cut the pattern out, but rather than dampen our spirits it gave us momentum to see the others at Hackpen Hill about 15km away and the site of the White Horse.
It wasn’t long we were off the country lane and into fields and small woodlands. Now it is worth mentioning at this point that in Sofia’s recent assessments dyspraxia and hyper mobility were flagged, and in part I would not have done this hike if I didn’t have these as a source on knowledge for monitoring Sofia. But likewise, it made this type of challenge more important because in truth I have never challenged her in this way as I wasn’t sure what the situation was and it is through challenge that the mind starts to focus and find out what it is made of. She was also wearing a back pack of about 4 or 5kg to promote this need to focus.
The walking for an average person was very easy, maybe a bit lumpy in places, but generally very good walking. For Sofia on the other hand little lumps and bumps and tufts of grass are a challenge. She had to really concentrate and look where she was going and with some weight on her back it was important. EVERYTHING about this experience was new to her. Yes she has walked down paths and over rocky terrain to get to a place not far and never carrying a weight and always reluctantly so, but never for the sake of the body being primary transport over a long distance. She was doing very well.
There were a number of stiles we had to climb over and she demonstrated well how much her confidence in that area had improved by clambering over them with a degree of alacrity (back pack included) that wasn’t matching her confidence in walking. We also made a number or rest stops in beautiful places drinking our water and enjoying the scenery before moving on again.
Finally after clambering about the country side for several hours, we arrived in a small village walked into the first pub we saw and collapsed with cold drinks and our pork pie and fig role dinner. I’ve never liked Pepsi, but this day a cold pint of it was like liquid gold!
At this point there really wasn’t too much left in us, so I made a target on the map of where we would start looking for a place to put down our bivy bags and we headed off around 6pm hoping that it really wouldn’t be too long before we could rest up. It ended up being a 2 hour slog up hill before we stopped. But we managed it and it was a perfect location. A small piece of lawn behind a hedge next to a single horse race track that wasn’t seeing much use. In fact we were on a big horse racing stable/stud farm. On another day, if we were exploring the world of horses, this would have been fun and interesting, today however, we didn’t care much other than having a decent place to sleep for the night.
Sofia had done really well on her first day. I was really proud of her. Whilst tired, her body seemed to be generally coping, however, she did say her ankles were sore, so I made a note to give her more attention the next day about walking properly.
These camp chairs are perhaps our favourite items in our kit!
Sofia processing her day, it was a lot to take in.
We were up early the next morning, and took it slowly watching the sun rise before packing up and heading off about 8am. We hadn’t seen any horses, and as we walked through the main training area, our hearts sank even lower, as still no horses. So much evidence of them but not a single horse in sight. It was only as we were coming to the end of the gallops that suddenly we heard the sound of cantering hooves!
What a joy! Sofia loved it. We sat for a moment as they turned and started to walk down the track to start the gallop again. We were told to move before they galloped up again as we were a distraction for the horses so we moved higher up and out-of-the-way with a good vantage point.
Sofia may be doing some horse therapy at her new school so it was really lovely to see her showing an interest and asking questions about the different sports and what they were like. I think it is now a case of watching this space and see if she develops this.
We developed more of a rhythm as we went, it was hot, so often I was walking ahead and then waiting for Sofia to catch up. Most of the byways were very over grown, and like the day before, we didn’t see a soul! it was wonderful, but tough going for Sofia who was nervous of pricks and stings and not being able to see the path clearly to place her feet. Progress was slow and by the time we were on the Ridgeway trail that took us up Hackpen Hill, we were both pretty exhausted.
In the end we only walked as far as a clear view of one of the circles (and to be honest it looked like the other had been harvested) where we collapse looking over it finishing our water and hitting the pork pies and oranges to find our strength to make it to Avebury. I was by now starting to feel pain in my shoulder muscles, feet, calves and the tops of my thighs. Thankfully Sofia was only feeling it in her feet. But either way, I decided that we should get to Avebury and call a taxi back to the car. Sofia was really tired, and whilst she was happy to see the circle, it wasn’t the degree of happy she might otherwise have had if she hadn’t been walking for 4 hours already that morning.
By the time we got up and started walking the storm clouds were gathering. It seemed as if the universe wanted to make sure that I didn’t change my mind and heading home. But we still needed to get to Avebury. We were in the middle of nowhere, and Sofia was ready to give up. I tried to teach her how to march as a way to focus her brain to get through to the end, but she didn’t want to listen only argue and complain that I wasn’t listening to her and it seemed better to leave her to it and a walked ahead as showers of rain started to pass over us. Perhaps not the most sensible idea as she slowed down even more which I hadn’t thought possible. We didn’t join forces again until the out skirts of Avebury where I sat waiting for her for about 45mins and I hadn’t been walking fast.
I had stopped to watch her a few times from a distance and to make sure she was ok, and she seemed to be taking 3 steps and then stopping to look at something before taking another 3 steps. The main thing though is that she made it, and she did it on her own for all intense and purposes, something that she is now proud of.
We (more me really) staggered into the first pub we saw. I got some cold drinks and then set to task to find a taxi to come and pick us up in the middle of no where and take us to the middle of nowhere, but being Friday the 13th, it took over 30mins to find one available, and many thanks to the lads behind the bar who helped in this mission. Once the cab booked, the heavens opened in happy agreement, the thunder clapped and the lightning flashed in joy, and the possibility of me ever being braver than my body could handle was washed away with it!
When we got home, Sofia jumped in the shower and came out refreshed and all her ‘pains’ gone. I on the other hand will be hobbling to days as the lactic acid clears from my calf muscles and shoulder muscles!
This is the second time she has had this lesson that she may be overstating her condition. Whilst I appreciate that in her world what she is experiencing is a life and death event, I think it is important that she realises the reality that she isn’t even close and proportionalises her response and I do remind her of Peter and the Wolf when this becomes apparent in the hope that gentle repetition will help her to over come it. I think it is in part about fear and not knowing her own body, I’m not unsympathetic, but she does need to get past it. The last time was when she screamed like her leg was broken when in reality not so much as a bruise had appeared the following day. It is something the school she is going to can work on. I’m so happy she has a placement there!
The tension and pressure of the court hearing for Sofia’s school placement reached its pitch on the 25th June where the hearing turned into a non-event. The Local Authority really hadn’t prepared a case and by the time they had realised that there was a case to answer, it was too late for them and eventually they conceded that Sofia would start at the school of our choice in September but as yet have not conceeded that she needs a residential placement and we are now waiting for the judge’s decision (yes still!)
All the time the sun has roared above since our return from Dubai and as the weeks have ticked by my feet became increasingly itchy and it seems mine weren’t the only ones. Sofia, who has been generally negative about biking this year, was only to happy to jump on the bike and head up to Scotland with only a few days notice.
If only it was to be so easy.
The only thing that the bike really needed was a new battery. I had no idea there was such a thing as a dud battery, but now I do. So at the last-minute I was phoning around to find a new one, and racing off to get it, praying is wasn’t another dud. This put a kink in our plans time wise and time had suddenly become important on this trip the day before setting off. Leaving on the Saturday, we had to be back by the following Sunday so Sofia could spend time at her new school on Monday to help her mentally prepare becoming a student there (the transition).
We set off on Saturday half a day late and stopped by Mick the mechanic on our way north for a chain check and the leaky fork seal to be fixed and then pushed on for another couple of hours, stopping the night in a field just next to the Peak District. Wonderful to think we would be driving through in the morning, this trip was looking good already and I was glad for our minor delay.
Until the next morning, when I discover the adaptor for the bike to charge the phone wasn’t working. So the morning was instead spent finding a garage, and waiting for the phone (which was now only 2% charged) to give us enough charge to find our next stop. We didn’t hit the road until midday, by which point there was only one thing left to do, ride directly to our destination for the night, counsins’ who live in the Boarders of Scotland.
It had been a long time since I last saw them and it was lovely to reconnect and catch up and Sofia got to make a new friend (a cousin 3 times removed perhaps? I’m still not 100% on the nomenclature of cousins, but effectively my cousin’s, wife’s niece) who had exactly the same interests as Sofia it was no nice to see her hitting it off with someone so well, it really doesn’t happen often, certainly not to that degree!
We spent some time pouring over maps and it became clear that a full trip may not be possible in the time frame. What I was certain of was that I didn’t want to race around anymore and already it was starting to feel that way with the big push up to Scotland that day seeing nothing along the way.
So we set off Monday with a carefree attitude of what will be will be, but to start heading south again on Wednesday, and to meet up with a group of lady adventurers on the Saturday camping in the Yorshire Dales. This Monday night though, we were meeting up with Salla.
We met Salla last year at a bike meet in Estonia. She was part of a Finnish contingent who we hung out with. She was now touring the UK and had stayed with us several weeks before on her way to Ireland. Now we were going to meet up in Scotland for a night of wild camping before parting ways once more.
It was such a lovely day of driving. No rush, no big decisions, just wonderful weather, wonderful roads and wonderful scenery. We met with Salla, and as happens with the universe is agreeing with your actions, we found the perfect wild camping spot next to a river in about 10 minutes! Finding wild camping spots are usually a lot more challenging. After setting up camp Salla and Sofia went for a wild swim in the lovely warm water of the river whilst I went through the discovery of realising that my wonderful Optimus cooking stove was not going to work and the spare part I needed wasn’t in the spare parts pack! Why was this important? Haggis of course!
Yes, I decided that we should cook a Scottish bonanza that night and had bought a small haggis earlier in the day.
Thankfully Salla had her kit and in the late evening sunshine we watched eagerly as the pot steamed wanting to see the results. I was warned by the butcher that the bag would pop if it was too hot for too long, but simmering is a subjective measurement we discovered, and sure enough the bag had popped! we were too hungry to care, and most of the haggis still in its bag seemed fine. We woofed it down. Not the best haggis I’ve had, but glad we gave it a go, and glad Sofia tried some too.
Tuesday morning, the sun high in the sky once more, we headed North to see how far we would get. Inverness it would seem. I had run out of chain oil and needed to get some as well as getting the chain tightened (again! – we riding heavy it seems :D) Whilst this was taking place the phone, the centre of navigation and communication, was dropped, never to rise again.
I can’t tell you the pain I went through to reach a decision! There we were, in Scotland and the sun was shining! But the bottom line was, despite a group of guys who were also on a riding visit tempting me with news of the amazing roads they had been riding, I would not enjoy Scotland if I tried to stay without automated navigation, not with a deadline to be home by Sunday night.
So that afternoon we headed south again. It was hard going when it was hot, but as the air cooled in the late evening, with no traffic and the Northumberland NP for scenery, I have to say it was not a wasted day at all. We stopped in Newcastle for the night and the following day we were home by late afternoon. It was almost like we had woken up from a dream. Such good memories in such a short space of time so far away.
I’m already planning a return trip at the end of July early August – hopefully the weather will be with us again!
This year is a challenge, I knew it would be, but I don’t think I really appreciated how much of a challenge it was going to be, and it hasn’t even reached its climax yet!
The first challenge has been home schooling. This has not been an easy task for either of us. For Sofia it has been the ‘doing’ of it, and for me the understanding of why the ‘doing’ is so hard for her. In the end I gave up trying to understand and trying to make it happen, and found different language (way to talking to her) just to make something happen.
The second challenge is the appeal process for Sofia’s school placement. This is a challenge because of the emotional investment and will climax in June and July when we have the hearing and the process that follows according to the outcome. There is and upside to this though that has made the home schooling challenge a little easier.
A couple of weeks ago Sofia had her assessments with speech and language, occupational therapy and educational psychologist. All three were supportive for the placement I want for Sofia. More than this though is the flagging of new diagnosis for Sofia. It is common with a diagnosis of autism, that a list of further diagnosis will follow, and for Sofia these will be – Dyspraxia (lack of coordination), Hyper mobility (loose ligaments which compromises her ability to control the movement in her joints) and Executive function disorder (the inability to ‘do’ tasks).
Why would I be happy about these new ‘conditions’ coming to light? I’m not really, no one wants to have a label that says their child can,t do something that the average person can. But, I can tell you, and I wish all the parents struggling with accepting an autism diagnosis could read this, but knowing these things makes life as a parent so much easier.
It is hard not to blame yourself as a parent if you child is not performing in the way that is expected persistently. To question the why’s and where fors. Ultimately you might accept it is something you can’t change, like I did after several months of homeschooling, but that feeling that the reason you are at that point is because there is something you have gotten wrong in the first place, and there is the sense that you have given up on your child because you no longer want to try to get them to that expected place. Failure.
The diagnoses changes this perspective completely. Now I understand Sofia’s resistance and difficultly with exercise and why she tires so quickly for example. The biggest thing for me though is the executive function disorder, which effectively means that she literally finds day-to-day functioning difficult, the simple act of actually doing things, planning to do things, prioritising, multi tasking, behaviour modification and control, self-reflection etc This is the right arm that is missing in the autistic brain and is a very common diagnosis that comes with it and it is really important because it provides the detail to autism which is otherwise a vague and difficult thing to understand.
The biggest cause of suffering in the autism world for both the child and those around supporting the child is expectations. What we expect of life and how it should be. It is such a subtle thing that holds us in place, keeps us going and motivated, but when it is misplaced, it can become a heart breaking pain from which there is no escape.
Last year Sofia and I came up with the super cool idea that it would be great if she could ride her own motorbike on a round the world trip when she is 18. It was such a great idea and she loved it. And whilst I would have been happy if this idea had resulted in Sofia learning to ride a bicycle or was able to achieve a degree of independence as an adult by being able to ride a scooter at the very least- today I realise that even these small goals may be beyond her reach. Have I given up though? No! of course not, but nor does it sit in my field of future goals for her because, whilst before I expected that Sofia would be able to over come her difficulties to get something that she wanted, I now know that even if she really wants it, it will not be enough and the path to achieving it will be a complex and challenging one that can’t be predetermined. Like walking through a deep dark tunnel with no light not knowing if you are going to find the end of it or even if it is going to take you where you think it is taking you. You just have to happy that you are there and going somewhere which is better than no where.
One expectation that is absolutely out the window, is the idea of doing another bike trip over this summer. India was pegged to follow through Sofia’s interest in Hindu culture. After 3 months of home schooling, the thought of trying to plan anything has sent my mind into melt down – I simply don’t have the capacity for it. Indeed, anything outside of the realm of home schooling and appeal causes minor melting in the brain, so I am seriously thinking about packing the bikes away for this year. I did then think that at least a month at an ashram would be good for us both to lose weight and increase our fitness – but sadly even this isn’t going to happen. I checked in with the solicitor before booking flights to make sure I wasn’t going to be needed after the hearing, however there is a risk that there is a second hearing and then there is also a process after the results which I need to be available for. There is a 2 week window immediately after the hearing only but we have a visitor in that time period so we can’t do anything then. If we do anything this summer it will be truly spontaneous!
Thankfully our local authority have come back sooner than expected with an answer to Sofia’s school placement. — sadly it was a ‘no’.
This sets out our agenda for the next eight months as being completely focused on appealing this decision. It will be no mean feat as I have been told that local authorities fight mean and dirty. The upside is that their evidence lacks depth so it looks like the counter to that is to overwhelm the tribunal with assessment reports of Sofia that give a much clearer picture of what she really needs and argue that the placement is necessary to meet those needs.
As this will be the focus of our existence I’m not sure whether we will be able to get to India as planned. In terms of time we may have a window before the tribunal date but even then funds will be significantly depleted by the appeals process (assessments will be privately funded and a solicitor will need to be on the case) that we may not be able to go anyway.
We will remain hopeful none the less – so watch this space for last-minute announcements!
For our new followers, the back story to this is that I made the application for this placement just before we left for Africa – somewhat naively, I thought I would be able to appeal a ‘no’ decision on the road – not only was I not in the mind frame to deal with the appeal so ended up cancelling it, but now I’m working on it I realise that actually it would have been a mammoth effort of super human proportions to achieve any success whilst travelling (especially with all the problems we were having with the bike!). So when we returned to the UK Sofia took up the placement that was offered. One year and one term later we are now revisiting the placement – only this time I am determined to make sure that she gets it. Please keep your fingers crossed for us!
Happy New Year! We hope it is a good one for everyone!