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.

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22 comments on “Of Pokemon and Dinosaurs and being Edward

  1. […] taken an interest in our BeingEdward story. I am pleased to report that the number who have read my original post has now reached four figures; so thank you so much to all who read and shared. This week, Martha […]

  2. […] to the amazing response to Edward’s Granny’s recent blog post, I have finally had the nudge I needed to get something […]

  3. Lilian Magill says:

    Thank you. Hugs for all.

  4. […] 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 […]

  5. Janet, how brave you and your family are in talking about your amazing grandson Edward. How wonderful that you can enjoy all his marvelous qualities even when exhausted, There are so many forms of autism and by sharing Edwards story it may help other families in similar circumstances. It will certainly help us all join the conversation about autism and hopefully spread more understanding and tolerance.

  6. crissouli says:

    Congratulations, I have included your blog in INTERESTING BLOGS in FRIDAY FOSSICKING at

    https://thatmomentintime-crissouli.blogspot.com/2019/01/friday-fossicking-18th-jan-2019.html

    Thank you, Chris

    What a beautiful story…I hope that by fearuring this it will help others to be less judgemental and more accepting. Edward’s life might not be easy, but he has chosen his family well..one that surrounds him by love and understanding. Bless him and all your family.

  7. Mr Bernard Johnson says:

    Janet,

    I have read your posts on an almost daily basis over many years and have always found them of interest. However, this one demands a much wider audience, I only wish I new how to accomplish that.

    Best wishes,

    Bernard Johnson

  8. martyw37 says:

    Hi Janet
    So very beautifully written to explain to us more about Edward’s form of autism .
    We are learning about our great grandson’s genetic disorder Crie Du Chat-5
    He is 5 years old now and has two younger brothers,
    He cannot walk or talk but we have not given up hope that there will be coming a day when he can do both !
    He did well at pre school and JK at the school (KidsAbility) where he attended that also gave him his therapy but now he is at a public school in SK , goes on a little bus in his wheel chair and has a wonderful man teacher who is making sure he is included in all the activities in class and he is well accepted by his peers.
    I call him my “Angel Boy”.

  9. Janet, what a beautiful post about Edward. I am not sorry that this experience exists for your family, but that fact that as a society we are judgemental and unforgiving. An important article and I am glad you wrote it & clearly as you would, support your family.
    I hope Edward continues to be him & to find his own way with the support he & his family need.

    With love.

      • Kitty Hayes says:

        Thank you, Janet. I have a 58-year old child who has Angelman Syndrome. He requires 24-hour care which I relinquished when he was five years old. His home is Beverly Farm in Godfrey, Illinois, which has cared for children like him for over100 years. Part of your words I have used in a memo to members of my family who have never accepted him. Oh, for a kinder world. Kitty Hayes

      • Thank you Kitty. I hope my words will, in some small way, make the members of your family think again

  10. Brenda Turner says:

    Wonderful, strong, important article. I have a very good friend with a son on the autistic spectrum, who is finishing a PhD in mathematics this year. we all are valauble. In our own ways. Thank you Janet,

    Brenda

  11. Yvonne Penrose says:

    This resonated so strongly with me Janet, to the point where you could have been describing my own – now nearly fifty year old – son, at 5 years old. And to some extent my own husband. Is it just a bloke thing? Anyway, son is now the CEO of Global aid agency having spent many dangerous and courageous years working in war and famine zones all over the world. I hope the day will come soon when these different thinkers are recognised for their enormous talents rather than it being seen as a problem. He is happily married (to a saint) and has a son of his own. I am immensely proud of him, not least because he has made what many consider a handicap into a tool and an advantage.

  12. manchestermama says:

    O my goodness Janet, I am in floods of tears. What a wonderful support for your family and of course I shall ‘Share’ this far and wide. You have written a beautiful piece to help us on the outside understand what life is like for those like Edward and your family. You can rightly be proud of them and yourself. I will now read the links you have suggested. Wishing you all well. Marija

  13. Linda Moulder says:

    This made me cry Janet, I can fully understand your feelings. My 7 year old grandaughter has CP and although not Autistic has Autistic traits. Public spaces are best avoided and meltdowns are common. Well done for putting into words what these families go through.

  14. Olli Tooley says:

    Love this. Thank you for some very wise words, Janet.

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