Panda Explosion #PDADay #Autismawareness

The day has dawned. It is #PDADay. For our family every day is #PDADay as we support Edward who has a diagnosis of Autism with Pathological Demand Avoidance (PDA). For more about what this means see my post Of Pokemon and Dinosaurs and being Edward and the website Being Edward, where his mum explains a little of the excitement that is life with Edward. In order to raise awareness of this, often overlooked and misunderstood, condition. Martha began to organise a Panda for PDA Day campaign. It began with close family agreeing to hide pandas around the country, which were accompanied by information about PDA. Friends got on board, then it spread to friends of friends. Martha spent a small fortune purchasing and posting pandas to willing volunteers. We began to hide pandas on Sunday and there are many still to be hidden. Worries that panda finders would not enter into the spirit of the thing and feedback news of panda discoveries, were unfounded. We’ve barely begun and already the responses have been overwhelming. We’ve had pandas hidden in many English counties (with more to come) and today I will be hiding what we believe will be the first Scottish panda.


One (we think it is Frederick Herbert panda #18) started his journey in Manchester, has been found twice and is currently on his way to Clapham Common. Another, Star, was hidden in a station and is now on his third train ride. Pandas have been hidden in shops and libraries, near schools and on footpaths. Panda hiders have told their friends and colleagues about the project and that too has spread awareness. The success, even at this stage, means that we will be continuing this throughout the year. It is obviously not sustainable to keep purchasing pandas, so we will be knitting and crocheting our own and looking to repurpose small charity shop pandas. Alternatively, why not make pandas from Hama beads or Fimo or paint a panda or a stone? – although we need to work out how to attach the information cards to stones! Anyone can join in the fun, anywhere in the world. We can email you the information details for you to print out and attach to your pandas and at the end of the week a printable label will be available on the Being Edward blog. We can also find patterns for you to make your own woolly pandas. We hope that you will then report on where pandas have been hidden, either on Martha’s website or on the Pandas for PDA Facebook Group or by tweeting @Being_Edward.

As well as raising awareness, Martha has set up a go fund me page to enable people to support the invaluable work of The PDA Society. She is also inviting those who make a donation to name a panda. Names vary from ancestral names (for my family historian friends), items from nature, book characters (potential for my authory friends here) and other weird and wonderful inventions – your panda, your name choice.

P.S. If any of my local friends have oddments of black or white wool, please leave them in my porch.

All about Pandas #Autismawareness #PDA

If you are expecting this post to be about family history, it isn’t. It isn’t about books either. It is however about family. As regular readers will know, my grandson, Edward, has a diagnosis of Autism with Pathological Demand Avoidance (PDA). For more about what this means see my post Of Pokemon and Dinosaurs and being Edward and the website Being Edward, where his mum explains a little of the excitement that is life with Edward. 15th May is PDA awareness day and as a family, we are using the days around that time to spread information about the implications of PDA. Martha is coordinating a panda explosion. (Edit – We’ve discovered that one of the collective nouns for pandas is cupboard – so it will be a Cupboard of Pandas, rather than an explosion). The panda is the logo of the PDA Society, so toy pandas are to be hidden round the country, with explanatory cards attached, explaining a little about PDA. Martha’s blog post explains this more fully.

This started with the idea that close family would hide a few pandas but it is already spreading, with friends and acquaintances rushing in to buy and hide their own pandas, to fund panda purchases, to donate to The PDA Society, who do wonderful work and to spread awareness. If this takes off, we may extend it for a longer time period. If you know anyone who would like to make/buy/hide/name a panda. Do get in touch.


The Hidden Children?: my thoughts on home education

Firstly, an apology to those who follow my somewhat random posts for the history, for the bits about books, or for the occasionally vaguely witty observations about my travels or my life in general. This is not one of those posts. There is something about today’s world that appears to have turned me into some kind of activist. It would probably be more accurate to say that I have been forced out of my comfort zone and those maverick qualities that I have always had have surfaced. I hope that you will read this anyway, despite its length (you’d better, I got up at 3am to write this because I needed to get it out of my head).

I also have to make it quite clear that I have nothing but admiration for all those who work within our beleaguered school system, struggling with increasingly inadequate funding and layers of ridiculous and frequently unnecessary bureaucracy. Many of my friends and family work, or have worked, in schools. In my convoluted career I have been and still am, associated with education in a variety of ways; in mainstream schools, in private schools, in special schools and in adult education. I was a pupil at three very different establishments, I have been a teacher, a teaching assistant, a governor, a university tutor, a bursar, a dinner lady and a parent.

Home education has been given a high profile of late and much of the media coverage has been negative. I have never been a home educator but I have encouraged friends to home educate and I have been a tutor for home educated children. Oh how I regret that I did not add this to my list of roles. There is talk of ‘hidden children’, children who have somehow slipped beneath the radar of officialdom. Suddenly, this is seen as some kind of scandal. Absolutely, the welfare of every child is paramount. Home education should never be allowed to mask inappropriate treatment of a young person but the recent demonization of all those who, often reluctantly, see no option but to take their children out of the school system is deeply unjust. With the exception of an infinitesimally small percentage, children are not home educated in order to deliberately hide them from the authorities.

Compromise is a necessary feature of even the best of schools. No teacher, however brilliant, can possibly be doing the absolute best for all thirty of the children in front of them at any one moment, let alone all of the time. Of course, teachers differentiate but no one can personally cater optimally for thirty different ability levels and learning styles every minute of the day. As a teacher, for the most part, you play to the middle, throwing as many scraps as you can to those on the periphery, perhaps, if funding cuts haven’t yet hit, with the aid of a teaching assistant. This isn’t bad teaching, it is survival. I have taught classes of just three children, where I was acutely aware that what I was delivering really only suited one of them. Yes I made sure it wasn’t always the same pupil but it meant that these children were not receiving an ideal education for much of each day. Despite this, broadly speaking, schools work well for most pupils, most of the time. Yet there have always been and always will be, those children for whom school is not the right place. Indeed for a few, it is so bad a fit that it is positively harmful and often having those children in a classroom is to the detriment of not just that child but also of the others in that group. These are the children on the side-lines, so far on the margins that they are, at best, ignored. At worst, their frustration, their anguish or their terror means that become disruptive and they are removed from the classroom, or they are permanently excluded. These children have been labelled forever. They are seen to be failures, yet it is they who have been failed. I really wish that our schools were ideal places for everyone but we are a long way from that and with more and more slashing of budgets, we are getting further away by the day. Here is the real scandal. The real hidden children are those who are within the school system yet are being failed by it.

So let me tell those who frown upon home educators, that this is not a decision that has been taken lightly. It is hugely difficult to keep your children at home. You have no resources, no pay, no energy and no respite. It can of course be unbelievably rewarding and indeed vital for those for whom school just does not work, for a variety of reasons. The home educating parent is investing heavily emotionally, practically and financially in creating an individually tailored, nurturing learning environment because they believe that this is overwhelmingly in their child’s best interests. The media’s implication that all home educated children are neglected, when in the vast majority of cases that could not be further from the truth, is not only wildly inaccurate but hugely disrespectful and damaging, as well as causing untold distress.

I was very nearly a home educator. As my eldest child neared school age, I doubted that school could prevent her from becoming disaffected and bored. Then we moved house and I approached three local schools to ask what provision they could make for my nearly four year old who could happily read the likes of Winnie the Pooh (unabridged) and was as precociously numerate as she was literate. I was brushed off, I was patently disbelieved and then I found the right school. All went well for four years. We lived in an area where children changed schools at the age of nine and again at thirteen. My child had been working with children up to two years older than she was. When her friends reached nine, I was told that my eight year old should stay where she was, whilst her classmates moved on. This ridiculous decision was based purely on her physical size. I was furious but impotent. Her academic education did not suffer but her friendship groups were severed and she became socially isolated. She would be the first to say that this did not materially change until she went to university.

Although I had seriously considered home education for daughter number one, school was working for her (at least at that point), so daughter number two went to school, of course she did, it is what you do. All the warning signs were there. Why did I ignore the fact that this daughter spoke to no one at school, unless she was directly addressed, for over two years? Why did I not read more in to her hitting me with her lunch box on the way home each day because I had put her through such a traumatising experience? Hindsight is a wonderful thing. So we persevered with school, she duly moved schools at nine and then the bullying began. Any school that tells you they do not have a bullying problem is deluded. What differs is how well they deal with it. This school dealt with it badly. Their solution was to suggest putting my already bored and disaffected child into a lower ability set to keep her away from the main perpetrator. I refused. Why should the victim be disadvantaged? Matters got worse. My child began deliberately underperforming and then school refusing. I spent many long weeks gradually getting her back in to school. Looking back, I have no idea why I did this. It remains the single worst mistake I have made as a parent. I have never been one to bow to social pressures, so I cannot cite that as a reason. I suppose, despite all the evidence to the contrary, I still had faith in the system. To make matters worse, I had the time and the experience to home educate. What little paid work I was doing would have been compatible with helping my child to learn at home. I would have had to sacrifice nothing but convention. I still can’t explain why I didn’t take her out of school and it is one of my biggest regrets that I did not. School left lasting scars on my child and any learning was despite, not because of, the education system. This was not all down to the school itself; it was primarily because my child was so deeply incompatible with that learning environment, that the experience was both harrowing and harmful.

I fully support our education system yet, equally, I realise that there are some children who are infinitly better off outside it. As regards education in the academic sense, there are few who would argue that a personally tailored one-to-one delivery is not the best vehicle for imparting information. Yes, learning to work with others is a skill, as is accepting that you cannot always be the main focus of attention but that can be part of home education. There is a massive emphasis on schools as a vehicle for socialisation as well as education. This is ridiculously artificial. At what other stage in life are you socialising with twenty nine other people with whom you may have nothing in common apart from your chronological age? As someone close to me said, you end up sitting next to the least worst person. Of course, we all have to live in the real world and learn to get along, to a greater or lesser extent, with others and be part of a group but school does not have the monopoly on providing this experience. Home education is not incompatible with socialisation, in fact it can encourage socialisation with a much wider range of people. Peers can be cruel as well as kind. Enforced school-induced socialisation wreaks irrevocable psychological damage on countless bullied children; every year some are driven to take their own lives.


After all that I thought we deserved a nice calming picture

We also have to acknowledge that there are those for whom the prospect of interacting with others is an overwhelmingly anxious process. We would not remove hearing aids from a deaf child and expect them to ‘get used to it’ and somehow hear better as a result. Society would rightly be appalled at the prospect. Yet we do not apply the same measure to those with crippling social anxiety. By the application of some seriously perverted logic we think that throwing them into the school environment will help them ‘get used to it’. This is not just the equivalent of ‘the deep end’ but a bottomless chasm. It may be that this extreme form of exposure therapy might appear, on the surface, to work (the  child stays in school is the imperfect indicator of success) but at what hidden emotional cost? How much better would it be to lead that child gently and slowly, in a calm and supported environment, introducing them to others a few at a time, until the appallingly frightening prospect of ‘other people’ becomes more manageable.

In recent days, the media hype about ‘hidden children’ has reached a frenzy. Home educated children are not hidden. For the most part, they are happy, well-balanced, inquisitive young people who are learning important life skills alongside more traditionally academic topics in a manner that is one hundred per cent suitable for them. They are often highly skilled at self-motivation and are superior independent learners who are preparing to become engaged, sociable and often brilliant adults who are an asset to the workplace and society as a whole. The ill-informed who believe the ‘fake news’ now view all home educating parents as resting somewhere on a scale between weird and abusive. These parents are incredibly hard-working and self-sacrificing. They have often come to home education only after a lengthy battle to get suitable provision for their child within the school system; provision that the grossly overstretched resources cannot always provide. We have to accept that and not continue to attempt to fit the proverbial square pegs in to round holes, doing irreparable damage as we knock off those corners in the process. It is not and does not have to be, one size fits all. Instead of vilifying home educators, can we not celebrate difference and support those who have made this decision, not lightly, not on a whim but frequently out of sheer necessity? We do not all have to be the same, different does not have to be wrong.

For those who are here for the history, ponder on this. It is only in the last hundred and fifty years that we have universally delegated the education of our children to others. Until then, most children learned what they needed to from their parents and those around them, within the home. That may not have been best for everyone but it was certainly better for some. I for one want to live in a society where we have the freedom to choose what is best for our children and one where we are supported in that choice, even if the path we choose is not the conventional one.

Normal service will resume soon, I promise.






Of Pokemon and Dinosaurs and being Edward

Often my blog posts are about family history. This one is a bit different. This is about my family present, posted with the blessing of my daughter. I want to tell you about Edward, my wonderful elder grandson. This is not self-indulgent granny-boasting, this is important, please persevere to the end. Edward is funny, he is bright. He loves dinosaurs and wildlife and Robot Wars. He can tell you the properties of every robot in every series of this television programme. He knows all the roboteers and where they come from, which robot was the victor in every encounter and the modifications that were made to it for the following series. Ok, I will admit, Pokemon is gradually eclipsing Robot Wars. Unfortunately there are hundreds of Pokemon and to be in his presence means you will need to know about them all, about which ones evolve and which ones don’t, oh and what they evolve into and their special powers. You will have to be able to pronounce the unpronounceable names and not forget if you’ve been told once, several weeks ago, how it should be said. Edward loves board games, as long as he is the victor and soap-boxes and nature. His language is complex and varied; he is the only four year old I know who can use ‘ante-penultimate’ in context. I’ll be honest, we had to look it up when he wanted to know what came before penultimate. ‘Conversations’ with Edward do have their unique element but they make us laugh. He also happens to have a facet of autism known as PDA (Pathological Demand Avoidance). Even if you think you know about autism and what that means, you may not be aware of this specific manifestation of the condition. Edward isn’t five yet, so he can’t tell you how this makes him feel, therefore I would like you to look at this brilliant account by an adult with the same lifelong condition and at this one page summary by the PDA Society. I know you think you are too busy, that you don’t have time to read all this but please do, it could be life-changing for someone you may meet who will need you to understand them.

img_20181106_134652The recent official diagnosis confirmed what his close family have known for some time but it has involved focusing very much on what he can’t do, not on all the many things that he can. So I wanted to celebrate all the joy he brings to those around him. I want you to know about the time he spent talking to the men at the Isle of Wight dinosaur museum (to whom I shall be eternally grateful for their patience), when he asked about every single artefact they had in their workshop. I want to share his excitement when he rode his home-made soap box and to recall how he repeated to his parents exactly what I had told him about how to approach the miniature ponies so they wouldn’t be scared. I need to tell you about the emotion on a rare family get together (Edward finds dealing with more than one person at a time difficult) when I had to hold back the tears as he spent an afternoon holding his younger cousin’s hand, instead of pushing him over in frustration because his cousin was too small to play in quite the desired fashion.

More than this, I want to pay tribute to his truly amazing, patient and totally exhausted parents. I am writing this because I want you to understand children like my Edward. I want you to know that they are not being naughty, or defiant or spoiled, or angry, or deliberately violent. They are just being the way their brains have made them; they are trying to cope with what to them is a very scary and incomprehensible world. Crucially, I want you to understand their parents. They continually have to run the gamut of the tutting and disapproving looks in the supermarket or park. The accusations of bad parenting, the ‘why don’t they give him a good telling off’, the ‘my child would never have got away with that.’ Unbelievably difficult though it is for them, they are going against the natural parenting instinct to guide your child by telling them what to do. They are giving their son exactly what he needs, the chance to grow and blossom in an environment where demands are kept to an absolute minimum, in order that his anxiety levels do not overwhelm him.

When you see a child who looks just like yours, a child who does not obviously have an intellectual or physical disability, a child who, on the surface seems articulate and yes, I will use the N word ‘normal’, please remember that you do not know what lies beneath. If that child then behaves in a manner that society has labelled ‘naughty’, or ‘anti-social’, or ‘unacceptable’, that child genuinely may not be able to control themselves. That tantrum on the pavement, or that lashing out at the adult with them, may be their only way of coping with the enormity of a life that is, to them, overpoweringly confusing and loud and bright and just too much to bear. Before you raise your eyebrows at the carer who is ignoring the meltdown in a public space, before you criticise them, either in your head or out loud, for inadequate parenting, please stop and think for a moment. That parent has probably not had an unbroken night’s sleep for years, that parent may have little or no opportunity for a life away from their dearly loved child, that parent may feel alone and unsupported. They might not be ignoring their child’s behaviour because they are lazy, or because they are a bad parent. They are not allowing their child to ‘get away with it’. They are, despite how much it might hurt them inside, despite their embarrassment, despite their sense of isolation, doing, out of overwhelming love, precisely what they should be doing for the good of their child.

I would love to offer my grandson a world in which he can be understood, where difference is tolerated and his unique positive qualities are lauded. I want a society where parents who are doing the very very best for their children are supported and praised not denigrated and made to jump through impossible bureaucratic hoops. I feel impotent in the face of the ignorance and misunderstanding that surround this little family and others like them. Using my words is all I have. I will support and defend them with every fibre of my being. I will fight so that others might have even just a slight indication of the enormous mountains they have to climb on a daily basis. It is lovely when you share my posts. Sometimes I am encouraging you to buy my books, or those of my fellow authors, sometimes I am inviting you to join me on one of my courses or at one of my presentations, or I am suggesting useful resources for your family history research. Other posts share my travel mis-adventures. None of that matters. This is the big one, the important one. If you don’t usually share or like my posts, please share this one. Please help to make life just a little easier for my grandson, his parents and families like them everywhere. Thank you.

PS Since I posted this, Martha has set up her own blog to share more about life with Edward. She would welcome your support. Or follow @being_edward on Twitter.