Bucks to Budapest and Back Again: Reflections

So, I have been feeling that I should write a what-did-it-all-mean blog post.

To start with you can all have the opportunity to listen to the theme song of our trip “Dumb Ways to Die”. Otto was introduced to this by the Crawford kids and thinks it is the funniest thing he has ever heard and memorised all the lyrics. Given that it seems to be a cult hit amongst the under-tens, this has proven to be quite a party trick. It is a song that was released in Australia as part of a public safety campaign. The video is quite funny too: Dumb Ways to Die.

More importantly: how is AJ getting on? Well, brilliantly. She is not yet skipping through the buttercups but she has made significant improvements that have become more evident since we have come home. For me it has been particularly striking seeing her back in her own environment, surrounded by her old toys. She has always really enjoyed playing with her bricks (not quite Duplo but a similar oversized Lego) but it had always been a bit of a hit and miss affair. She could more or less put one on top of the other but then would knock those ones over if she tried a third. Since we have got back from Hungary she has put together some amazing constructions and managed to stay focused on what she is doing for much longer.

Her balance is also coming on. I haven’t seen her on it yet but Fo has got her a little stool, the same height as the boxes they have at the Peto with sides she can hold on to. Apparently she is sitting on it quite happily. Jan, who has looked after her a lot, saw her the other day and was very impressed.

We have learnt a lot and will be continuing with the techniques that we have learnt while we were at the Peto. The chances are that we will go back at some time. I think that if she can go on having the sessions that she had before at PACE, which does the same conductive education, some work from us and a visit to the Peto once in a while, she will make steady progress.

She is also vocalising a lot more than before. I had a run in with the lovely Clarey, AJ’s conductor at the Peto about AJ’s speech. Clarey felt that because we encouraged her to use sign language we had given up on her being able to speak. It is my fondest wish that AJ can one day speak. Not least because she has so much to say and would love to chat to people. And she is joining in to all our conversations, not making an awful lot of sense to the rest of us but she certainly has a point to make.  It is amazing how much she is trying to speak since we have got back and we are all trying to encourage her as much as possible.

So, I think that in terms of AJ, if this is a beginning rather than a thing in and of itself, she will have really benefited from the trip.

And we all have. It has been absolutely wonderful. I feel very privileged to have been able to spend this much time with my family (thanks to all those who made it possible, you know who you are). It is not something a lot of us are able to do with all the pressures of work and so on. Which is a shame because it is brilliant.

It was a proper rooooad triiiip, going from Budapest to the Med in Croatia to the Swiss Alps in three days was pretty nuts but quite an experience. My fellow travellers were great. AJ had one screaming episode on the way out and one on the way back, both justifiably because she wanted a crap. Otto either wittered entertainingly or was plugged into one device or another. It amazes me what my parents used to do in the seventies, five of us in the car with three story tapes to last us from Scotland to Greece. And Fo made it all happen, she wouldn’t want an internet gush, but thanks.

Here’s a little slideshow of some pics of the trip. There are a few selfies in there and lots of Otto being made to stand in front of one view or another. And if you want some musical accompaniment, I have included Canned Heat’s “On the Road Again”, which I religiously played as we hit the road every day on our trip home.

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Back to Bucks: The Last Push

The Massif drive was not so bad and we made it to Beanie’s house in Chantilly, just outside Paris. We managed to stop for a lovely picnic in a glade below some Castle walls. a lovely French farmer came up to us and gave us some plums, though the kids were more interested in a massive meringue. Otto absolutely insisted on going to the Eiffel Tower, so that is another experience to chalk up. However, once we got up, via the stairs, he just wanted to come back down again. Ah the whims of a seven-year old.

Otto halfway up and AJ at bottom
So we make the final push to UK this evening, not sure what time we will be arriving but all looking forward to our own beds.

It’s Gonna be Massif!

I certainly had one of my dimmer days yesterday! Firstly when we went to fill up, it turned out that we had a missing petrol cap. It did not take much investigative work to decide where the blame lay! Fortunately, with much gesticulation and my cod Italian, we managed to get a replacement which the garage guy promised me would get us to “Inghlaterra y de volta”.
Then I had a direction malfunction. I started swearing at the satnav. “What the bloody hell is she talking about?” (Digital Publisher I may be but I still think there is a little bossy lady inside the box) “This can’t possibly be the right way!” But after a bit of this, with Fo talking me down, I realised that Lausanne is not Lucerne, nor even Luzern, and not Lucerna either. These multilingual countries have been confusing me since Belgium! Lucky really as I was having a crisis realising that we would be driving through Montreux and I only had a Red Hot Chilli Peppers version of ‘Smoke on the Water’ on my iPod, which would not have been appropriate (apologies, another ROCK! reference).
On both occasions, Fo with her limitless patience managed to avoid calling me a Muppet, but I think she was itching to.
But what a drive! We opted to go over a pass rather than through a tunnel, which took us along a windy road that looked like it had been made out of Scalextrix. Otto spent his the trip spotting waterfalls and AJ loved it. I think having the scenery rising up around her meant that she could take a lot more in from her car seat position. So she could really join in the pointing and exclaiming at the natural wonders. Otto does, for a bright boy, occasionally come out with some statements of the bears defecating in the woods or Pope being Catholic variety “Oh, look, they have got cable cars in The Alps!”
Today is going to be more of an ordeal and less scenic, six hours through France to Chantilly. So no chance to see anything of Lucerne (or whatever it is called) – not even the covered bridge!

Back to Bucks: Lake Garda

No time for much today. We have made some less than earth-shattering discoveries – Lake Garda is gorgeous and the Italians know their sh*t when it comes to food. Otto has had a pizza in Italy, so that is another experience to chalk up. I had Gorgonzola for breakfast, which is pretty hardcore even for me. We are at a lovely AgriTurismo, which has more of an emphasis on the Turismo than the Agri, though they do make their own olive oil. Absolutely perfect spot for a night. Super-cool lady in charge who comes out with right proper Italian stuff like “Que brava la bambina” when talking about AJ.
Pic below with AJ by pool and Otto in background on sun lounger.

Heading off now, turning north to next Lakeside stop in Lucerne. Can’t complain!

Back to Bucks: Istria

Well we have made it to the Med! But frankly there have got to be easier ways to get to the Mediterranean Sea, the Mare Nostrum, it was a bit of a battle. What the GPS gave as five hours turned out to be ten. Mainly I think the problem is that the Croats have not fully come to terms with the fact that they are a very popular holiday destination and lots of people want to go through their border crossing and their motorway tolls at the same time. So if these are not big enough or not run very efficiently there will be massive tailbacks.
There is also a mad disparity in the quality of their service stations. We had a great impression of Hungarian service stations, in fact one of the best meals we had in our whole time there was our first stop in a service station: Hortbagy Pancakes, chicken in a paprika sauce, yummy! But the first service station in Croatia barely had sandwiches in a packet and this was the one just past the border on the main motorway and then in another service station, on a motorway in the mountains, we found an incredible selection of food and two playgrounds. So, yeah, I have become a bit of a service station train spotter.
In fact, I am becoming a bit of a Euro road trip geek overall, we now have Canned Heat ‘On the Road Again’ which we will be listening to every day as we set off and I have put together a playlist with songs to suit all occasions:
Daughter – Pearl Jam, for when AJ is getting restless
No Rest – New Model Army for when she is really kicking off
It Smells Like Teen Spirit – Nirvana Otto is only seven but there are times when it feels like he is getting that way
Voodoo Chile (Slight Return) – Jimi Hendrix for the “I am making time” Withnail moments
Tunnel of Love – Dire Strait for the tunnels obvs
Walkin Man – Seasick Steve in case the car gets any worse; we needed new front tyres in Budapest, it is making a noise, and Otto’s door no longer locks, so fingers crossed we make it back in the same vehicle we set out in
Heart of Gold – Neil Young for AJ
Me and Bobby McGee – Janis Joplin because that is the ultimate road song
I have also downloaded Edie Stobart’s ‘Trucking Songs’ a compilation of ROCK! Yes that is ROCK all in caps with an exclamation mark! It even has a Motörhead song – brilliant it autocorrected to give me “Motörhead” with an umlaut – so yes Bill and Ken, I now have a Motörhead song and love it.
AJ also had one of her worst journeys of the whole trip, she was not comfortable for some reason and didn’t manage to nod off, which is unusual for her, so we had a bit of a screamy trip. But hey the whole experience just made us appreciate the final destination all that much more. We got to our campsite, to our deluxe cabin and we made it in time for a swim in the sea, which is what it was all about. We have just had a wonderful fish platter, only slightly marred by the band. They looked like Indie Croats, had a funky electro violin and then hit us with some of Celine Dion’s finest! AJ liked it but you have to say she is not the most discerning.
So tomorrow we head to Lake Garda, again theoretically five hours but we shall see.
No pics today, I doubt the campsite wifi will take it. And in any case, the only ones I have are of us in a traffic jam, which I took while having a fag by the side of the road.

Back to Bucks: Last Night in Budapest

So this is it. Four weeks on and out last night here. I imagine I will have to write a taking stock blog post once we are back home to reflect on our whole adventure. So there is only time and space here for a picture of our fifteen layers of cake for breakfast. Budapest is famous for its five-layer cakes and we had three. And also a quick clarification. Fo tells me that when I wrote that AJ had taken some steps, people understood that these were unassisted. They weren’t, that will be a way off yet but she is consciously taking steps and that is a massive step forward in itself. We were in the pool today and I was walking her along and with the aid if the water, she really was stepping. Amazing!
Oh Ok, a couple of other pics, me and the Aves in the pool and team Baxter enjoying our last meal in Budapest.

In Budapest: Back on Track

I think we are back on track morale-wise, not least because I had a great night out with my gorgeous wife, see above. We found a great restaurant, Klassz, which obviously appealed to classy people such as ourselves! Great Hungarian food, not too expensive, with all the right wines to accompany the right food. A semi-sweet Tokay with the pan-fried duck’s liver and we liked the red so much that we just got the waiter to leave us the whole bottle! He thought that was very funny, Well it was our one fancy night out.
We did not make it to the Rock Festival (sorry Fay!) The only act I would have liked to see was Rachid Taha and I did not get far selling Fo Algerian Punk music. It is good stuff but not really her thing shall we say. But we did do a bit more than just the middle-aged dining experience. We went to Szimpla Kert, which is a now well-established derelict bar. There are lots of these in Budapest that spring up in ruined buildings and last as long as they can. This one has been around for a while and is obviously in all the backpackers guides judging by the youthful, international clientele. Nevertheless, we loved it. It is full of all sorts of whacky decor. We ended up sitting in a spray-painted, communist-era car with floorboards made of skis, chatting to two charming and attractive young Italian girls who seemed to have nothing better to do than chat to a middle-aged English couple. They have since been texting to see if we want to hook up again. Fo has told Otto that I have two Italian girlfriends and he has been taunting me with “Daddy’s got two girlfriends”. It took a bit of tricky explanation to make him see that maybe this was not something he should be encouraging given that he would be the victim of this potentially broken home.
We just had a real laugh together which is exactly what we needed. Top girl, my wife!
We also had a very positive meeting with the summer director and our main conductor at the Peto. They had been reading the blog and were worried that we were down about the progress AJ is making. They pointed to the ways in which she has advanced and that this should be a process that will continue to evolve after we have finished this short, intensive course. We also discussed how the fact that encouraging her to walk might not be an end in itself but part of a process to help her understand herself better, build her strength and improve her balance. So we are both feeling a lot more chipper about that.
I got to take her in for the full session today, on the basis that I cope better on little sleep than Fo. AJ is definitely managing to balance herself sitting down a lot more. And after me thinking that the walking was not helping very much, she took a few steps herself today, I was nearly in tears!
So we have one more week to go. We are going to have a very chilled weekend to gird ourselves for the drive home.
Thanks to everyone for your kind words of encouragement. It means a lot to know people are thinking of us.

In Budapest: Balaton Blues

another scenic shot of Budapest, this time with AJ in the foreground

We all took a bit of a dip in morale early this week. We got out of town to Lake Balaton and spent a wonderful couple of days with Belen and Rob and extended family. Otto described it as a holiday from our holiday and it really was perfect. Unfortunately I did not take any pics, so you will have to make do of more touristy ones of Budapest, see above.
But I think it also possibly meant that the return to Budapest and the Peto felt more like work than before. Fo finds it difficult at times being with other children who are younger than AJ but considerably more able than her. My impatience has been getting the better of me and putting in so much and getting little back is very hard. Otto is feeling homesick, for all the unlimited Minecraft time he gets, he misses his bed, his mates and my mother.
I said we all took a dip in morale, that probably does not include AJ. She continues to be her usual cheery self, working hard and doing her absolute best in her sessions. Someone described my blog as brutally honest and I try to be and to be honest, we are not seeing any great progress in what is now the third week. We have been talking about just facing the fact that AJ will be immobile, unbalanced and without the use of her right arm and getting on with life the best we can in the light of that.
But I think we are back on track. Otto is becoming an unofficial conductive education conductor, he was brilliant today, helping AJ along and motivating her. Fo and I are having an evening a deux tomorrow — we are undecided between acting our age and having a boat cruise dinner on the Danube or reliving our youth and getting ourselves to the Szigert Festival — one of Europe’s finest rock festivals on an island in the Danube, what is it to be…? I will tell all in a future post, unless it really gets out of hand!
Thanks all for your suggestions for our route home. We have gone with Maggie and Zoltan’s idea of a night in Istria on the beach and then, hopefully an Italian lake.

she is darn cute and that is undeniable

In Budapest: What next?

We are not allowed to post photos or videos from the Peto on the internet. This is partly for the usual child protection reasons that apply to any educational institution but also for intellectual property reasons; they do not want other practitioners to see what they do for fear that they might be copied. So I am afraid you will all have to put up with our tourist pics from Budapest, the family at the baths, Otto being dragged round the castle and so on.
What next? This covers what next on our trip and what next for AJ.
So, firstly we need to plan our trip home. We thought we would see if anyone reading this had any good ideas for where we should go and where we can stay on the homeward leg. Our plan is to go south, via Croatia, Slovenia, Northern Italy and then to France. We will be staying with Otto’s Godmother in Paris but we have quite a few kms to cover before we get there. So if anyone has any bright ideas, all suggestions gratefully accepted.
Fo and I have just had a chat to review what we think the progress has been thus far. Well Fo has got some callouses to show for all the hard work she has done. We do spend more time rolling around on mats than we normally would! But beyond that it is hard to see what advances AJ has made physically. I am still unconvinced that she will ever walk, though Fo is more hopeful. This is not just me being negative, Fo also thinks that the progress has been largely imperceptible.
The Peto method does very much focus on getting people to walk and we often come across kids being marched up and down corridors with very bendy legs with a variety of contraptions to encourage them. I asked whether we should perhaps focus on her crawling but they thought that was more tricky as her right arm is her weakest limb and she would need that to crawl, so they thinking walking is more feasible than crawling.
I think her balance has improved and she can sit unassisted for a few seconds and she does seem more comfortable in a chair. Though as she will eventually slump, you cannot leave her alone. She definitely has good days and bad days, when she is on form she finds the whole experience very stimulating. Today she was tired and didn’t get along so well and got quite frustrated.
I am learning a lot about her by spending so much time with her, which is itself very valuable. It has always been relatively easy for me to get home from work, tickle her and chuck her around a bit and only at weekends really begin to understand the daily grind that it can be looking after her full time. Sorry “grind” is not the right word. It is hard to find the right word to be honest, it is a strange mix of gruelling and uplifting… Grulifting? Possibly it is the sort of feeling people get from running marathons. I am very much a hedonist and have never really gone for the Xtreme sort of experiences, though I have always said that we have done Xtreme parenting.
We have got to meet some excellent people through being here. Twice we have bumped into English-speaking families with an older kid in a wheelchair and just started chatting to them. We are very much not the only people to be going through a similar kind of experience.
We are still enjoying Budapest. We have not quite visited all the bistros along our street but we are working on it! We are now regulars at the newly-opened Italian ice cream shop and are putting in suggestions for improvement: more absorbent serviettes — when kids and ice cream meet, wiping should not he taken lightly, nor economised on.
Otto and I took a long walk through the Castle district and old Buda today. There were lots of pics of the area through the ages. This got him started on questions about warfare and we seem to have covered everything from the Mongols to the Cold War today. He definitely thought it was a good idea for the Hungarian king to build the castle on the hill in case the Mongols ever came back again. We had to reenact a bit of trench warfare so he could see why it was so difficult to get across No Man’s Land with a load of machine guns firing at you. And when he asked me “Russia and America were enemies… But do you realise that they are on opposite sides of world from each other?” I had to reassure him that I did and then tell him about Inter Continental Ballistic Missiles, not something I know much about. That is the good thing about seven-year olds — you can feed them any old bollocks.
Spending time with Otto has been wonderful. His obsessiveness can drive me round the bend. Minecraft is his latest craze (thanks Dylan GS), it is a pretty good game but he can spend hours, not only playing it but also talking about it. He has also got hold of a song called Dumb Ways to Die (thanks Jake Crawf) and sings it incessantly. I can’t upload songs via the WordPress Blog app on my iPad, but you can look it up on YouTube, it is great… in the original… once. Unfortunately Otto has inherited all the combined musical ability of both his parents and his singing is lamentable. Even Fo and I wince.
I hope the bit above about AJ does not sound like we think that the trip will not be worth the while. She is gaining a lot and seems to be getting more verbally communicative even though this is not something the Peto method particularly focusses on. And this is very much a beginning, we will be taking away ways that we can work with her long terms, which is where the payoff should be.