Awards Assembly

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Before you read this blog, please bear in mind that this is about me and my family and our particular journey through education. I see other parents on Facebook beaming with justified pride in their child’s achievements as we come to the end of term. And I don’t want to take anything away from them, just explain where I’m at.

If you’ve been following this blog for a while you’ll realise that I’m often not very sentimental about things. But this Monday I had Middlest’s year 7 Family Assembly. I wasn’t really sure what to expect, but it soon became clear that it was, among other things, an awards ceremony. More than that, it soon became clear that every student was getting at least one certificate.

Because of the way the classes are named, I knew that Middlest’s class would be last so I had to wait for five whole classes get called up. This gave me a lot of time alone with my thoughts. I actually felt a bit, not exactly sad, maybe thoughtful is a better word.

Fate, or whatever you believe in, dealt us this hand. Our children are autistic. Middlest won’t win the award for Positive Attitude to Learning. I initially though that this a make-weight award but the Head of Year explained that they asked every teacher to grade every student on their attitude, from 1 to 4 with 1 being the best. If any pupil got more than 13 1s overall, then they got the award. I’d guess Middlest sees about 16 or so teachers, and I know from what he says, that some of them just don’t get him. They don’t understand that his mind, while it is incredible, works differently to the way the education system thinks it should. If he’s allowed to work on his own terms then he is brilliant – forced into a mould he can just freeze or refuse to participate. Add in super-sensitivity and you can see the problems he faces every day at school.

I guess this was one of the first times I actually felt the loss. The feeling of what could have been. In another life, I’d have been sitting there wondering which of his subjects Middlest might have got Student of the Year or Most Improved student. (He’s not really a joiner so those all-round awards were out of the window too.) As it was I wondered if he’d get the real make-weight award, Valued Member of the Year Group.

I just want to make it clear that I am so proud of him. His autism gives him a unique insight on the world and he constantly astounds us with his wisdom. But it also means that for him, every day is a struggle. As best we can understand, it’s like he’s spending his whole life in a foreign country, never quite sure of what words mean, or what behaviour is expected or required. On top of this, everything is too loud, too bright, too itchy and  overwhelming. Once you bear that in mind, the fact that he’s completed an entire year in mainstream without dropping out or going to special school is a miracle. I think he deserves a medal for that alone.

Anyway, after all that introspection, he got a Bronze Attendance Award. (And he didn’t want to shake the head-teacher’s hand which was a bit awkward.) Not entirely sure how I feel about that, as he had little input into the decision whether or not to go to school every morning. He was lucky not to be too ill. But, on the other hand, if he’d had slightly more trouble fitting in, he might have been denied that award and I’m not sure that would be fair either.

So, yeah, it’s been an interesting end to the term. If I’m really honest, I was more interested that the ALNCo is taking him seriously, that he’s got an appointment with the Educational Psychologist and he’s now on track to a diagnosis. But that’s not the sort of thing that they hand out certificates for.

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It’s been a while since I updated this blog, for one very good reason. I wrote a book! More than that my book, The List, is being published tomorrow.

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It’s a crime novel (fiction) set in Cardiff. As it’s not about autism, parenting, being a house-husband, or even anything pagan or witchy I’ve tried to keep it separate from this blog. This means this is the only post you’ll see about it from here.

You can buy the book here, and I’m having an online launch party on Facebook tomorrow here – this is just a chance to chat to me, see some photos, learn about the book and maybe win prizes! I’m obviously also still on Twitter – @grahamhmiller and you’ve already found this blog but my main writer page is at grahamhmiller.com

The Reason I Jump – review

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So, we’ve spent the week going up the Hay Festival and we saw a couple of talks about autism. The first was by David Mitchell (Cloud Atlas not comedian!). He has a boy with non-verbal autism and a Japanese wife. These two facts aren’t random – they lead him and his wife to translate the Reason I Jump by Naoki Higashida.

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It is a ground-breaking book because Naoki has non-verbal autism but uses a cardboard letter board (both our Western alphabet and Japanese characters) to communicate. He can use a computer but finds it distracting – actually most writers probably agree with this statement! When he was thirteen, he wrote this book. It’s very short (and was painstaking to write) and takes the form of around 80 questions and answers, together with a couple of short stories.

I admit that I got the book out of curiosity. Being a father to boys with autism (Asperger’s Syndrome) I look to learn what I can about the condition. So, I picked up this book in a scientific frame of mind. But what came across was incredibly moving. I felt I’ve spent so much time in the world of diagnoses and school departments and Three Letter Acronyms that I lost sight of the human condition.

Naoki explodes a lot of myths about autism. The traditional view is that children with autism are lacking in empathy and prefer to spend their time alone. But Naoki feels pain that he is so much trouble for his parents. He wishes he could communicate better, that his memory would function like Neurotypicals, that he could control his body and not flap and stim. And he recognises the problems this causes for those around him. Often he doesn’t want to do the same repetitive things but doesn’t seem to able to choose something else to do.

It acted as a reboot for me in looking at my own boys. I’m lucky that they can talk so I’ve read bits of the book to them and got their feedback. It seems that while it’s one child’s point of view from the other side of the world, what he says does apply. And it’s helped me change my outlook. I now see my children as less naughty, less a collection of symptoms and more as confused and scared people who are trying their best.

So, for me this was a world-changing book. I’m guess it’s going to be one of those books that I keep until it falls apart and I need another copy.

Putting teaspoons in the dishwasher

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I promised you a more upbeat post last week, and here it is. Admittedly it’s about loading the dishwasher, but bear with me. The dishwasher is just a metaphor for life!

I’m a house-husband, that means I spend some (not as much as needed!) time doing the housework. And thinking. Because, let’s face it, housework is often not that mentally demanding.

I also like reading self-help, change your life types of books. At the moment my life is running on a strange mixture of FLY Lady, Getting Things Done and I Can Make You Rich with an added dash of Life Changing Magic of Tidying. (Although I did seriously fall out with the tidying book over books and paperwork!)

Bearing all this in mind, I had an epiphany while loading the dishwasher. I tend to just drop things into the cutlery basket, especially if I’m in a playful mood. Or try to knock them off so they fall straight in. I was trying to get a teaspoon in and it bounced and skittered and went right to the bottom, underneath the arm. And I tutted, and frowned. I didn’t have a meltdown or anything but I was annoyed.

And then I realised. It’s all about focus. Whatever you put your attention on, you get more of. And what I was doing was putting emotional energy into my failures. Every time something missed or stuck in sideways, I’d complain. I’d bemoan the design and wonder why it wasn’t made to be easier.

So I switched. Now, if I launch a teaspoon and it slots straight in I have a little internal cheer. I drop a spoon straight through to top deck and it lands in the basket perfectly. Yay! I haven’t changed the way I load the dishwasher, and I haven’t improved my accuracy. But I ignore the misses and celebrate the hits.

And of course, this isn’t just about dishwashers. It’s about life. Today I got everyone to school on time, with all the right kit, and fully aware of all the after-school activities. That is a major achievement. (Self high-five!) I’m going to give this moment of self-celebration at least as much emotional energy as the days where it doesn’t quite hang together.

On a similar vein, yesterday I took time out to drive to Cardiff to get five new pound coins. I agonised over the decision. I wasn’t feeling great – lack of sleep and minor stomach bug – it was about 40 mins drive each way, plus parking, walking to the bank etc. And I wasn’t even certain they’d have them. Then I realised another great truth.

To be happy, do more of what makes you happy.

Damn that sounds simple. But I like collecting coins. I like being the first to have a new one. I knew the boys would enjoy it too. (They did spend a long time looking at them and checking out the new features!) So I did it. And it made me happy. I actually smiled as I came out of the bank with five shiny new coins in my hand!

And isn’t that kind of the point of life? To be happy and make those around you happy?

Being a house-husband

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So usually I try to keep these posts upbeat and positive, but every now and again I feel the need to let off steam. (Positive post coming next week though!)

Also, I usually blog about the world of Special Educational Needs, but today I want to talk about the other way my life is a bit different. I’m a house-husband, I stay here during the day and look after the house and children.

I chose this way of life. I didn’t pick it up as a stop-gap while looking for another job. Over ten years ago, I was let go from yet another computer programmer job which wasn’t making me happy. I had two children then, who The Wife and I dropped off to the child minder at half eight and picked up before six. No-one was doing well, in hindsight, with that arrangement.

So, we took the plunge, and to be honest, for the first few years we struggled financially. Then, slowly but surely The Wife’s career took off as she only had to focus on work and left the rest of it to me.

It was brought home to me how unusual this arrangement is when I saw the latest (in the UK) episode of  The Big Bang Theory. Two of the characters, Howard and Bernadette have just had a baby. Bernadette is feeling frazzled so has a night out with her friends, leaving two men, Stuart and Raj to look after the baby. Predictably they can’t cope and have to keep phoning with ridiculous questions. Of course, Raj has a doctorate in astrophysics and has previously demonstrated excellent problem solving skills.

What’s even worse is that they are told “don’t phone Howard” because the father is incapable of looking after his own child for a few hours. In a previous series, they were running the joke that Bernie didn’t want children, and earned more than Howard, so it was suggested that he take a career break to look after the baby when it happened. I’ll be watching to see if that happens!

Over the past week I’ve sat down and thought about this. I can find no role models for my lifestyle whatsoever in books, films or TV. Liam Neeson’s character in Love Actually comes fairly close but he’s a tragic widower making the best of it while searching for a girlfriend. Where men do have caring roles, like in Melissa & Joey (US sitcom), then it is played as slightly demeaning and the man is always looking for something better.

(Full disclosure here, I am a writer and I do hope to be earning money from this in the near future. But I don’t see it as something better than looking after my children. I see it as an extension of the tradition of writers (nearly always women) using the time while their kids are at school to write. It complements what I do in the home, it doesn’t replace it.)

When you pull it apart, there is a paradox here. On the one hand, it’s demeaning for a man to be a primary care-giver. It is (still) seen as women’s work and a man who undertakes it is expected to be moving on to important work soon. I even see this implied on some blogs and articles written by stay at home dads. When I worked in my son’s preschool, family members assumed that I’d be managing a chain of preschools in five years even though for me it was a job to bring in some much needed money while fitting around the children’s school times.

On the other hand there is a deep cultural idea that men aren’t good enough to do this work. Women have to multi-task and also be caring and empathetic. It’s assumed that men can run companies, sit on executive boards, hold summits, sign treaties – basically they run the world. But for some reason, it’s a stretch to imagine that I, as a man, can juggle the timetables of four other people, who work (or go to school) in three locations and still manage to provide them with food and clean clothes.

That video of the expert interrupted live on BBC News by his children sparked a fierce debate about patriarchy. It also spawned a spoof on Australian TV where a woman was in the same situation, so she fed the child, made a roast dinner and defused a bomb! Admittedly it was funny, but this assumption that women are capable and men are not is so deeply ingrained that it needed no explanation.

I’m really interested in this. Can anyone think of a fictional character who’s male, who’s chosen to look after his children while the mother is still around, and who makes a decent job of it? I can’t think of one, but I’m hoping someone somewhere will. Please comment below!

 

 

 

 

I am tired

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I realised today that I’m always tired.

I am tired because the children are always special. 24/7 they need managing. We have read many books and talked to experts and the truth is that pretty much we know the things we have to do, the way we have to arrange things, what tirggers them off and what calms them down. The difficult bit is doing it, all day, every day. Keeping it up throughout car breakdowns, spontaneous holidays, people being ill and the myriad of ways that life can wear you out and once you’re worn out that’s puts you off your next day’s game.

I am tired because the children don’t sleep. After years of arguing we found out that ASD messes up their melatonin production. So, when it comes around to our idea of bedtime, chances are they just don’t feel tired. Forget all about routines, they’ll throw out every possible excuse and delaying tactic. And this then ripples, from the Youngest to the Eldest, to the refrain of “I’m not going to bed, he only went to bed ten minutes ago, it’s not fair!” This has got better over recent years because they all read so well. Youngest two would read all night if we let them and Eldest is a teenager in the middle of exams so he actually wants to go to sleep and catch up!

I am tired because the mental health system, especially for children is fragmented and under funded. As I said last week, I’m working as a project manager for the children’s care. All the meetings to attend and forms to completer are like having a small business on top of running the household. At the moment we have a confluence where both Youngest and Middlest are suddenly making progress and generating meetings and reports.

Because I am tired, I don’t achieve what I would like to. From tiny, daily things like not recycling as much as I would like. (Batteries. I have five different recycling bins in the home and I can’t add in batteries. It’s just a step too far!) I have cut down to two loyalty cards because I didn’t have the energy to organise any more. I was getting stressed trying to remember the voucher details to remove £1.37 from my bill!

To bigger things, like the house being full of half-finished or even not started projects. I don’t tend to go out very much in the evenings, and I have noticed that our socialising is becoming less and less frequent. It’s not finding and paying baby sitters – it’s the rearranging their schedules and dealing with the fall-out. Sometimes we’re simply not strong enough.

I used to be the one who would put up his hand, volunteer for the committee post, go and help, pitch in. Now, I don’t. I think about where I could add value and how much energy I have left, if there are gaps in my schedule. And if it really matters to me. There have been exceptions, but overall I am reducing the amount I have to do.

Because we’re tired, the house is always untidy. Yes, I know, we have always been messy but some days there are a lot of things that we just don’t quite catch. We’re not as organised as we were. This year I let the car insurance just roll over because I couldn’t face the price comparison sites. The Wife wants to change to a green energy supplier and again, I don’t know if I have the time. If I have to choose between cheap and easy, more often easy is going to win!

I do know that it will all be worth it. We are helping them to grow and to integrate and to find their place in the world. Their behaviour is definitely improving and they are happier.

I didn’t mean this to be a whinge, just a plea for understanding. If I seem a bit vacant, if I don’t turn up or if I retire early there’s a reason for it. If you haven’t seen me down the pub or at that meeting or helping around the school so much, I can explain.

I am tired.

Project Manager Dad

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I’ve spent just over two years trying to secure the correct support for my three children. It is a tough uphill struggle a lot of the time as there are many agencies to deal with – spread across the NHS, the education system and the charity sector.

Often I see my role as being a project manager, the one person who sees the whole process from beginning to end and co-ordinates all the separate parts. Of course, there is a big discrepancy here. If I wanted to be a project manager, then I would see if I had the aptitude for it. I would also study the field I wanted to project manage in and make sure I understood it.

As with every parent of special children, I didn’t choose this, it chose me. Because of my personality I have become self-educated in both autism and how the SEN world works. I’ve even done a university led free online course.

I’ve also got into the habit of reading business focused books, like Getting Things Done. I have managed to turn the ideas into a plan for running the house. With various systems in place, the home ticks over with a mixture of diaries, to-do lists and action plans. (Well, ticks over might be an exaggeration. It does keep us one level above “lurching from one disaster to the next” though!)

Now I have a private diagnosis for Youngest which comes with a fifteen page report. This has to be transmitted to the GP. Then I’ll need to ask the GP to make referrals to the various specialists that he’ll need. Meanwhile, I’m also communicating a different subset of that report to the school, to see what they are able to do. And I have to combine that report with a different one from the Educational Psychologist. At the same time I have contacts with various local groups who also provide highly valuable input to the process which I then integrate with all of the rest.

And this is just one child, I’m also fighting the ALN battle with Middlest who has just moved up to Secondary School. Once again, my main job will be in transferring information between various bodies. In this case, I have some very valuable input from the National Autism Society which now needs to be handed on.

Last year I was actually asked to get a report from school and take it into my GP. I was quite surprised that the school wasn’t expected to pass it directly to the surgery, but instead I literally had to hand it across.

I think at the moment I have three or four appointments for meetings in my diary. It’s not a job I expected to do and I am very fortunate that I have the time and the skills to be able to do it. I keep a log of most of the important things that happen so I can refer back to it when I need to. The weirdest thing about all this is that you need to keep on top of things, keep pushing to make sure that everything keeps moving forward. But, at the same time, everything moves almost glacially slowly. It can easily take weeks between making a phone call and getting the appointment. If I worried all the time I was waiting, I’d make myself ill. So I’ve developed a knack of keeping the pressure on without stressing every day.

I do a lot of charity work and support the local groups as much as I can. Part of the reason for this is that I know how much work it all is (I’m very lucky to be a full-time house-husband).

Does anyone else feel like an unpaid project manager?

A spotters guide to ASD

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Disclaimer: I am not qualified in psychology or psychiatry. I am writing this because over two years ago I started wondering if my children could be autistic. I found that my impression of autism was wrong, to the extent that over two years after I started, Youngest now has an ASD diagnosis.

So, this is a guide to the lesser known aspects of ASD. I won’t be touching on the obvious traits like obsession on routines and very narrow areas of interest. Or a love of patterns and repetition together with strange speech patterns. And while we’re on the subject, our boys are not obsessively tidy. They have patches of wanting to tidy and certain narrow areas where they like to be organised, but in general our house looks like a bomb has hit it!

And, as I said, this isn’t a professional guide. This is one parent’s observations on behaviours that I didn’t know were connected to ASD. If anything in here triggers some recognition, your first step should be a chat with your GP and checking out reputable websites, like the NAS.

My child is not a robot

This was our biggest misconception. Our children are loving and affectionate. They like hugs. They have fantastic imaginations, often creating whole worlds in their heads. They also do eye contact, although, if you watch closely then you can notice that their use of eye contact isn’t quite normal. When they are stressed, they tend to look away from you, as they do when they are concentrating. But the whole Rain Man thing where their speech is monotone, they are fixed into their routines and have weird savant abilities? Nope. None of the autistic children I know are like that.

Sensory Issues

This was a complete revelation to me. Most people with ASD have some degree of sensory problems. In technical terms, the differences lie in the way that the brain processes the input from various senses. This can be either very over or under sensitive. Often both can occur in different senses in the same individual. For example, Youngest hates firework displays, air-shows and loud concerts and shows. He copes well with ear defenders. But on the other hand, he can get grumpy because he is unaware of his body and lets himself get hungry. And he has very little sense of where his body is, so can be quite clumsy.

This leads on to another good point – think beyond the five traditional senses. The ability to know where your body is, proprioception, is a sense too. As is interoception, the sense of what’s going on inside your body. And the detection of hot and cold, balance and a host of others. Autistic children often have a reputation for swallowing odd things (because they’re seeking new sensations by putting things in their mouths).

Sleep

This one was a real revelation for us. Apparently together with autism, you often get random production of melatonin, the hormone that tells you when to sleep. So when we say it’s bedtime, our children may or may not feel tired. And if they don’t, then being told to lie in bed in the dark with nothing to do bores them and leads to them thinking up many excuses to come down and talk to us. Recognising this truth changed the way we parent them and made us much more sympathetic. (And now they’ve learned to read, that helps keep them occupied!)

Development delay

Development of skills is what characterises childhood. But autism can be seen to be a developmental delay condition. Lots of skills like speech, understanding, toilet training, walking and other physical skills can be delayed. But, in my observation, the delay is often uneven and off-set by advances in other areas. I know children who can take electronics apart and fix them but can’t read at the age of 7. My own children excel in some areas academically but struggle socially.

One big clue that we missed was that pretty much all of our children’s friends (and they only had a few really close ones) were younger than them. This confused us at the time, because they are bright, so we’d expect them to have older friends. But that’s intellectual, socially they are delayed so find younger friends more to their liking.

Another big topic in this area is handwriting. I don’t know the cause, but often the handwriting of autistic children is awful and a long way behind their peers. The problem here is that writing can actually hurt their hands and cause immense frustration with school work. When you consider that the main way of presenting your work in school is through hand writing, it becomes clear that handwriting problems can undermine all aspects of learning and make it hard for a teacher to truly see a child’s potential. You can either choose to have intensive handwriting support or teach them to type, but chances are they’ll need some support in this area.

Academic success

This really is a follow on from development. Some autistic children are way ahead (and usually classed as Aspergers or High Functioning), others are behind, some to the extent that they have learning difficulties. And some are just about average. Or maybe they are advanced in some areas and way behind in others. It is said that if you compare ASD children to neurotypical (a shorthand for non-autistic, sometimes abbreviated to NT) then ASD children tend to have a wider spread of abilities and personalities. The one trigger that finally alerted us to go and seek professional help for our children was that they were way ahead academically, yet their behaviour was so bad I was called in to see the headteacher at least once a term.

I must point out that we love our three children dearly. But with their particular make-up they need a love that can see both their strengths and their weaknesses. That way we can help them to be the best they can be – we don’t give them a free pass on account of their special needs.

This post is already longer than I intended, so I’ll stop here. Each of these subjects could actually make a whole blog post on their own. As I said, this is only me trying to remember what it was like two years ago when I started on this journey. And hopefully I can help someone else to find some short cuts.

Two Years Later

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It’s been just over two years since I updated this blog. I have drafts dating back to the end of 2014, so this is a tricky post to write and get right.

We always suspected the children were special. We toyed with ideas and read books like “Raising Spirited Children” and sought out parenting help as parenting seemed to be a struggle. We had suspicions stretching back over eight years that they might have an Autism Spectrum Disorder (although we didn’t know to call it that) but we shied away from it.

We knew that autism wasn’t always like it’s portrayed in the media – characters like Sheldon Cooper on Big Bang Theory are exceptions. For all our parental pride, our children aren’t world changing geniuses. Neither can they do Rain Man style mental gymnastics.

Despite this our children are bright and articulate so they don’t look like traditional autistic children either. (It doesn’t help that The Wife’s mother worked in a special school for decades and so she had quite an extreme view of what autism meant.) But they are verbal, affectionate and manage eye contact.

And, on top of all that, we didn’t want to be seen to be middle class parents seeking a syndrome to explain their badly behaved children.

Then, over two years ago I read a Quora answer about what is was like to raise an Asperger’s child and found I was agreeing with pretty much everything said there. The Wife, having been brought up with the extreme view of autism, was very resistant at first, but soon accepted that Aspergers/autism could be an explanation for the problems we were all experiencing.

Finally, I reached a point where I realised that actually getting a diagnosis would mean that we could be better parents and consequently the children would be happier.

Happy children is the defining factor in my success as a parent.

I started to research and found a lot of behaviours that fit with a diagnosis of ASD that I had no idea were part of the disorder. (I’ve broken this out to a separate post as it gets rather long!)

For the last two years we have struggled through the system. Youngest has an Individual Education Plan (IEP), a diagnosis of ASD that would be Aspergers if they hadn’t taken it out of the book, a report from the Education Psychologist and help from various voluntary organisations. Middlest has been to a similar alphabet soup of organisations, CAMHS and PMH from the NHS and other voluntary organisations. He too is under the ALN (Additional Learning Needs) stream at school. Eldest is not formally being investigated at the moment. In an ideal world with lots of resources he could maybe get an Aspergers diagnosis, but really he is just extremely geeky!

Our current project with the Youngest and the Middlest is to take all the information and turn it into an action plan for the schools to make the children’s experience better. This whole process is unbelievably long. Our children are scoring very highly on all the academic markers and none of their behaviours are directly harming, so they are a low priority for a very stressed and under resourced system. Both the NHS and education system, through no fault of their own, don’t really have enough money to cope

So, that’s where we are at now.

All Cadw in 17

I’ve been tweeting about this since the beginning of the year but I felt a longer explanation was due.

To set the scene, it was in that dead time between Christmas and the New Year. The Boys had been to Stonehenge, celebrated Chanukkah, had a family party, all the end of term madness and of course Christmas day itself. So the weather wasn’t too bad and we were all feeling a bit flat, when Middlest suggested we go to visit a Cadw site. I’d been wondering what we could do in 2017 and something clicked in my head. I answered, “How about we visit all the Cadw sites?”

img_20170205_142058A brief note to explain to those non-Welsh readers. Cadw is in effect Welsh Heritage, the sister organisation to English Heritage. You pay a yearly fee as a member, then get to visit all the sites for free. (And after the first year it extends to English Heritage, and the others. If you’ve seen the price of one family admission to Stonehenge, it starts to make sense.)

So, I did a bit of Googling, found a Wikipedia article listing all the sites, copied the list and tidied it up into a spreadsheet. Now there are over 120 sites. Doesn’t sound too bad except that they are scattered all over the country. If (and I’m not sure we will) we are to complete this challenge, then we’ll have to go on several impromptu camping trips during school holidays.

caerleon-amphitheatre

So far I’ve added one site (Caerleon Amphitheatre) and updated details on others.. We’ve found 6,000 year old tombs and Tudor manor houses. We’ve gone from huge, well staffed castles to remote squares of grass in the middle of the countryside. Some have been, shall we say, hard to find!

Anyway, we’ll be primarily tweeting and posting to Instagram with the hashtag #allCadwin17 or occasionally #pobCadwyn17