Saturday, 29 March 2014

Coke Floats & Chemo: Rattling Cages

Coke Floats & Chemo: Rattling Cages: Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in...

Rattling Cages

Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in motion a chain of events that means that, in a few months time, nothing will ever be quite the same for my family again.

The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me. 

Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care. 

If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody: 


There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard. 

The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned. 

At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday. 

On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.  

Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted. 

I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.

There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns. 

All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not. 

Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds. 

There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better. 

A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged. 

Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject. 

Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time". 

So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.

Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice. 

Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff. 

There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny. 

Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that? 

Sunday, 9 March 2014

Coke Floats & Chemo: The Special Parent's Handbook Update

Coke Floats & Chemo: 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 ...

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.