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      A Guide to Pathological Demand Avoidance

       for Young People

      Glòria Durà-Vilà and Tamar Levi

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      To David and our amazing children, Josep and Mireia. (Glòria)

      With love and gratitude for the support of my mother Sarah, the professional opinions of my sister Dalia Levi, the constant motivation

       of my husband Vasilis Katsardis and the distracting entertainment of

       our daughter Tova Niovi. (Tamar)

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      Acknowledgements

      The author team would like to acknowledge the children who were under Dr Glòria Durà-Vilà’s care and who bravely let us into their world so we could understand it. We are also very grateful to their parents who were such strong advocates for their children and who worked with Glòria to offer the best possible care for them. You inspired and compelled us to write this book.

      We cannot let this opportunity go by without paying tribute to a heroine of the publishing world, Jessica Kingsley, whom we are going to miss enormously after her retirement. Many thanks, Jessica, for your enthusiasm for our work and for your unique contribution to the literature on autism and mental health; it has been an honour and a privilege to publish our work with you.

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      This is a letter to you.

      It could be called The Preface.

      This means it’s at the beginning of the book.

      Dear YOU,

      We have written this book for you. You are in control of this book at all times. You can read it whenever you like. It doesn’t matter how long it takes you to go through the book, weeks or years, or if you choose to give some pages a miss – it doesn’t matter at all! You can choose to read it by yourself or with someone else. It is also up to you to decide whom you want to share it with.

      You are an expert. You know yourself better than anyone

       else. If anyone wanted to know anything about how you feel,

       what you think and how you see the world, you are the best

       teacher there is.

      The goal of this book is that you understand

       what PDA means for you. This will

       help you and those adults close to

       you to develop your talents and

       to find ways to cope better with

       your difficulties.

      We have put a lot of information

       about PDA in here. No two people

       with these difficulties are the

       same so it would be great if you

       could help find which bits are right

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      for you and which bits are not. We would love to learn how your PDA is unique. This is so you and the important people around you – your parents, teachers or other trusted grown-ups – can have a better understanding of how PDA affects you.

      You are the very best person to tell us about your PDA.

      Wishing you all the best,

      Glòria and Tamar

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      Two people wrote this book together. We will introduce ourselves now:

      Hello, I’m Dr Glòria!

      99.9 per cent of my patients call me Dr Glòria, which is easier to remember than my surname.

      I studied medicine and child and adolescent psychiatry, and I specialise in Autism Spectrum Disorder.

      Let me tell you how the book came to be: over the years, many children and young people who were told they had PDA have asked me to help them understand what having PDA was all about, and even more importantly, what PDA meant specifically for them.

       Many parents and teachers have also asked how best to help

       children and pupils to understand their difficulties. I thought it

       would be easier if I made a book that you could take home, to

       look at any time you wanted. Also, parents and

       people who help you can read it to understand

       and support you better.

      As I did with my earlier child’s guide

       to Autism Spectrum Disorder, My Autism

       Book, I asked Tamar to help me with

       the book. She didn’t need much

       convincing this time either as

       she loved the idea straightaway.

       I will let Tamar introduce

       herself now.

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      Hi, I’m Tamar!

      It’s my job to explain things. Sometimes I explain things in pictures, as an artist for books. Sometimes I explain things as an author by writing them down. Sometimes I explain things in the classroom as a teacher. I spend all my time explaining things!

      Dr Glòria told me all she knows about PDA and we worked hard figuring out how to explain it together. Plus, I’m a member of social media groups where I check with parents, carers and families how they would like to explain PDA too.

      I made sure we left space for you to write and draw too. If you notice something missing, you can also write your own words in this book or make your own pictures to explain your own PDA.

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      This is a letter for your parents. You can share it with them if you want to.

      Dear Parents,

      We witness again and again, with awe and admiration, how you have bravely undergone the journey to understand your child’s difficulties and to get the best support for them. Some of you found that descriptions of PDA ‘made perfect sense’, that it described difficulties you were having while trying your best to parent your child. Many talked about a ‘penny dropping’ moment when reading about PDA. We listened and heard that your paths have been plagued with misunderstanding, confusion, controversy, ignorance, disbelief and even judgement coming from professionals. We were even told that some of you were refused help by services as PDA is not in the diagnostic classifications. Whatever name we might give to a child’s difficulties, it must never reduce their complexity into a meaningless label; a diagnosis should never put children into a box. On the contrary, it should help people understand their strengths and difficulties. This book aims to support a ‘needs-led’ individualised programme full of strategies and approaches that is shared by you, your family and friends, and all the professionals involved in the care of your child.

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      It is the parents of young people with PDA, with their immense tenacity and determination to help their children, who fight most for recognition among education, mental

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