Of Wonderful People, Chilling with a Book and a Little more about Edward

It is now a week since I posted about the wonderful world of Edward. During the past seven days we have been overwhelmed by the strength and the positivity of the responses that we have received. Thank you is completely inadequate. Thank you to the 76 people, from seven different countries, who shared my original post and to the unknown number who shared those shares. Thank you to the 844 people (and the number is still rising) who have viewed the post and thank you to those who have retweeted. The many comments and private messages of support, understanding and thanks have been amazing. You have no idea how important these are to Edward’s family. At one point Martha (Edward’s mum) said, ‘Aren’t there any negative comments’ and no there weren’t, not one single one because I have wonderful friends, so thank you again. We have tried to save all the comments for Edward to see when he is older. We believe that we have probably reached at least 1000 people, who are now a little more aware of what life with PDA can be like. To say this exceeded our expectations is beyond an understatement and it is not over yet. On the strength of this response and for the many of you who said you would like to hear more about life with Edward, Martha has now set up her own blog Being Edward, with the associated twitter account @being_edward so please do take a look. This process has been incredibly positive and uplifting for our family and it is all down to you; a real indication that social media can be a force for good and of course that I have wonderful friends.

chill with a book barefoot on the cobbles by janet fewLife has gone on in the midst of this media storm. I am ridiculously excited to have received a Chill with a Book Award for Barefoot on the Cobbles and the reviews and feedback have been wonderful. Another thank you. I promise I am working on book two but give me a year or so. There is even something that passes for continuous narrative now, about 4000 words worth. Ok, so they are going to need a lot of work but narrative nonethless. I am getting ridiculously sidetracked by the research and the focus is shifting slightly as I write but I hope the end result will incorporate many of the elements that you tell me you enjoyed in Barefoot.

More information about Barefoot on the Cobbles can be found here. Copies are available at various events and at all my presentations. You can order from Blue Poppy Publishing or directly from me. Kindle editions are available for those in the UK, USA, Australasia and Canada.

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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 high-functioning 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.

Of Oven Cleaner, Ancestor Chasing, Genealogy Courses and Procrastinating

Well I guess this is where I say Happy New Year. New starts, new resolutions new things to look forward to. For those of you for whom life can be a struggle, I wish an easier time for you in 2019. I hope it can be a year when the world is more compassionate and more tolerant of others’ differences. We can be polite and forbearing, even if we do not always agree.

I was lucky enough to do some wonderful things in 2018 and there are some excitements on my 2019 horizon, although I am hoping to find time to relax more and actually see my house occasionally. So what’s been happening chez moi? Firstly, the inevitable seasonal lurgy has left me lacking in energy and sounding very deep and interesting, or as we say, croaky. Notwithstanding, I have begun the spring cleaning. Ok, so this is probably spring cleaning 2010 but spring cleaning nonetheless. With the assistance of the fisherman of my acquaintance, to whom grateful thanks are extended, I have embarked on the kitchen. The lack of energy thing (and I’ll be honest, the fact that cleaning isn’t exactly my number one favourite activity) means that it has taken several days but the end is in sight. Cupboards have been emptied and de-cobwebbed – I live in a house made of mud, of course there are cobwebs. I have unpacked two boxes that hadn’t seen the light of day since I moved in in 2006. These have now been rationalised into one box. Said box is probably still full of stuff I neither need nor am likely to use but hey, it is one less box for my descendants to dispose of when I go to meet the ancestors. I have discovered that I have a lifetime’s supply of oven cleaner. Who am I kidding? At the frequency that my oven gets cleaned it will probably last until 2130.

martha regional breakdwon from documentary evidenceAfter a lovely time with two fifths of my descendants, I used the lacunae between Christmas and New Year to cough a great deal and revisit some family history. This was partly inspired by a recent meeting with the full range of my second cousins at the funeral of the last of my mother’s cousins. This officially makes me the oldest generation now, that is a sobering thought. I was also motivated to look at my daughters’ ancestors, in preparation for LivingDNA results for one of them. I found my own regional profile that I received from LivingDNA closely matched the documentary evidence and I have already written about this. This is the prediction for my daughter and we will see how that compares with the actual results in a few months’ time.

numbers of ancestorsIn the course of working out what I was expecting, I also calculated how many of my direct ancestors I have discovered in forty two years of research. Not a bad haul for someone whose grandparents were born in the 1880s and 1890s, especially as I am 95% sure who the missing 3 3x great-grandparents are, which has a knock on effect on the totals in earlier generations. Whether I shall ever be confident enough to ‘ink these in’ is another matter.

I’ve had fun revising a couple of courses. Firstly, the next presentation of my five week online course for Pharos Teaching and TutoringDiscovering your British Family and the Local Community in the early C20th’, which begins in a couple of weeks. There are still a few places left. What a great start to your family history new year, to revisit your more recent ancestry and look at their lives in context. I am also going to be leading an ‘Introduction to Family History’ day course at Crediton Library on January. It has been a few years since I last did this and plenty has changed, underlining how fast-moving our hobby is. Contact the library directly if you are interested in this one.

And what of the writing? I hear you ask. Well, if you aren’t asking, why not? Firstly, I have made a significant dent in my pile of Barefoot in the Cobbles boxes and sales online are going well. Please can I reiterate my plea for you to buy paper copies directly from me, from my lovely publisher or from an independent bookshop near you, rather than pressing that tempting little ‘buy it now’ button. Obviously, if you are outside the UK, or want a copy for your e-reader, please do press away. Some lovely reviews are coming in – more are always welcome  and I have been re-energised to get back to work on book two. This was abandoned during the frenetic Barefoot marketing phase but I have picked up the threads of this work-in-progress. The researching is proving fascinating. I don’t want to give too much away at present but I’ve been delving into the records of Westminster School and looking at seventeenth century licenses to pass beyond the seas amongst other things. Actual writing though has stalled. I have sharpened my pencils in preparation (I don’t write text in pencil – although I do use pencil for my notes). I have put a pile of reference books in a box but procrastination abounds. I am even tempted to spring-clean another room to put off the moment when I have to produce something that resembles narrative – maybe next week.