Sunday, 9 March 2014

The Special Parent's Handbook Update

The book is nearly ready to go, I'm well on my way through the final ever edit. A handful of people have already read the drafts and so far their comments have been simply amazing. "Simply the best book a parent of a child with a disability or a serious illness could read", "This book is going to be a must-read for every Professional working with disability", "A story of our time". Everyone who has seen it so far has been really enthusiastic with their praise, and I can't quite believe how well it all seems to be going, and how supportive and lovely people are being. 

Supportive and lovely; I can't find two better words to describe someone who has unexpectedly offered me so much encouragement and who is so supportively behind what I am trying to achieve. Rosa Monckton has actually taken the time and the interest not only to read the book all the way through, but she has also written a very powerful and passionate Foreword for the book itself. Rosa has been lovely all the way through, and I am just overwhelmed to have her support and such a strong endorsement from her for what I am doing. Rosa is very well-known as a Disability Campaigner, and she has presented some very shocking and hard-hitting TV documentaries about families in similar situations to mine. She is also a parent of a disabled child. I am so grateful that she is prepared to give my book her stamp of approval.   

The Special Parent's Handbook is a hands-on, practical parenting manual for parents who have children like mine, with serious illnesses and disabilities. It's the book I wish someone could have given me the day I gave birth, so I had some idea of what was ahead, the adjustments I would have to make, the prejudices I would have to overcome and the sheer tenacity I would have to develop along the way to ensure all three of my children, each with very different disabilities, would receive the extra help and support they were entitled to from the Statutory Services. At the time, it would also have helped to know that I wasn't alone in this new and rather frightening situation, and I hope this book will also help parents to feel less isolated. 

The book isn't all doom and gloom, I'm just not capable of being serious for too long, so a lot of humour and lightheartedness has managed to make its way onto the pages too. 

It's partly a story of our family, partly jam-packed with tips, tricks and strategies for the parents themselves, and partly a commentary on having to cope with the Statutory Services becoming intrusively involved with family life. Once a child has been diagnosed with a condition, you often face an onslaught of professionals, supporting, advising and helping, but often just getting in the way too and making an already difficult life nigh on impossible. How the attitudes of staff within the NHS, Education and Social Services can either make or break your day, and how collectively, the culture of each of these organisations and their inability to master joined-up thinking can really push families like mine very close to the edge indeed.  

It's bound to rattle some cages and spark some debate, but that's not a bad thing. I've tried to praise the good aspects of the statutory support we've received, whilst highlighting the less good. I've written about this before, but if only the NHS, Education and Social Services departments would listen to those of us on the sharp end of their services and implement our suggestions, they would run much more efficiently, reduce costs, and most of all, massively reduce stress for both workers and end-users alike. I want to help to shape better services for the future, not to whinge or criticise. I hope professionals reading it will recognise the spirit in which it is written, and learn from some of my own experiences. I think they will; whenever I talk to groups of professionals, which is something I've done a fair bit of over the past few years, they are very receptive and warm towards what I say. The message is often very simple - work with parents rather than against them, and everyone, particularly the children themselves, will get much better outcomes with far less wasted time and resources. There are already thousands of individual professionals who see the absolute sense in this model of working, but unfortunately they often find it very difficult to implement due to the clunky processes within the organisations for whom they work. 

Once the book has gone off to the publishers, next is designing the website to partner the book, and then it's going to be fun learning how to get the PR right. So there's a lot to do in the few months before the book itself is launched, hopefully in June this year. Thank goodness I'm never happier than when I'm busy with something I can get my teeth into. 


  1. dear Yvonne,

    I am just simply amazed at how you are sharing such comprehensive, compassionate and committed advocacy to help other parents. if as you say, it will probably spark debates within the system, that will be a good thing. and I align my hope with yours that the powers that be will put a great deal of thought into how much more efficiently and effectively services can be rendered as they read of your own observations and yours and Toby's stories. I hold big hope in my heart for you, and send you my admiration and love.

    much love and light,

    Karen xoxoxo

  2. Karen, thank you for your lovely supportive words. It's hugely exciting, but also a big responsibility and more than a little daunting too. And it's taking much longer than it should - a chest infection I've struggled with all week hasn't helped much either! I hope the book won't disappoint when it's finally published. Take care, I can't tell you how much your kindness means to me. Yvonne xx