The prognosis for individuals with Duchenne Muscular Dystrophy (DMD) is improving, with some men with DMD living into their 30s and 40s. More vital than ever, this book helps teachers and parents to support children and young people with DMD with their education and transition into adulthood.
Leading experts on DMD explain Duchenne and its impact in easy-to-understand terms. Going beyond physical management, particular focus is put on learning and behavioural issues, including speech delay and difficulty learning to read, as well as common comorbid conditions, such as ADHD, autism and OCD. Raising aspirations, the book gives guidance on effective support in the classroom and advice on the transition to adulthood, employment and independent living.
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Edited by Janet Hoskin
1. Introduction: DMD in a New Landscape. Janet Hoskin. 2. Why Do Some Children with DMD Have Learning and Behaviour Difficulties? Kate Maresh and Francesco Muntoni. 3. What are the Learning and Behaviour Risks in DMD? Veronica Hinton and Robert J Fee. 4. The Physical Management of DMD in School, College and Beyond. Lianne Abbott and Victoria Selby. 5. Early Intervention for Reading and Learning. Janet Hoskin. 6. Behavior Solutions in DMD. James Poysky. 7. How to Talk to Children about DMD. David Schonfeld. 8. Having a Road Map for Life - Creating an Education, Health and Care Plan for Duchenne Muscular Dystrophy. Nick Catlin. 9. Taking Charge of Transition. Janet Hoskin and Celine Barry. 10. Getting the Life You Want as an Adult with DMD. Jon Hastie and Mark Chapman.
This book is long overdue and will be a welcome resource for parents, caregivers, teachers and patients with Duchenne Muscular Dystrophy. It provides a compass with which to navigate the world of Duchenne Muscular Dystrophy, giving patients and caregivers the tools they need to manage the emotional, behavioural and learning challenges that sit alongside the physical realities of DMD. I found the chapter on talking to your children especially helpful, as I am very often asked by families when is the "right time" to tell their children. This books shows that although there is no right time, there are ways of addressing these unbelievably difficult conversations that will help. And there is lots else in the book to give parents the hope that their children can shoot for the stars and create as Dr Jon Hastie so movingly describes, a "fantastic life". -- Emily Crossley, Co-Founder and Co-CEO, Duchenne UK and Mum to Eli with DMD This book will support young people with DMD and their families to find solutions ahead of problems, so that they can transition into adulthood with the best support possible, and make the most of all opportunities. -- Tyran Hawthorn, Trustee of DMD Pathfinders This truly is a go-to guide; written in such a clear format and with the breadth of important aspects of living with Duchenne. Following from Action Duchenne's learning and behavioural toolkit, this will prove an invaluable resource to the community and complements the forthcoming updated standard of care guidelines. Very positive and inspirational, a must read for all. -- Diana Ribeiro, Chief Executive Officer and Director of Research, Action Duchenne There is much to recommend this wide-ranging reference for the DMD community - from the importance of phonics mastery to job seeking. -- Deborah Robins, parent and Muscular Dystrophy Queensland Ambassador This inspirational book goes 'above and beyond' the journey of the physical and medical challenges associated with Duchenne Muscular Dystrophy (DMD). Case studies that will touch your soul but inspire your heart. Offering refreshing, crisp, deeper perspectives supporting parents, teachers and clinicians; to focus on the individual person and not just their condition on their road to adulthood. -- Christopher Wilson, Deputy Head Teacher, Wilson Stuart School (Special Academy for young people with physical disabilities and complex medical needs) With medical interventions, boys with Duchenne are living into adult years. Traditionally, social and educational expectations have been lacking. This book will challenge your expectations as a parent or teacher. Encompassing neuro-developmental disorders associated with Duchenne, this book offers developmental recommendations for interventions, and empowers parents to successfully support boys into adulthood. -- Michelle Pomeroy, Developmental Educator and mother of a boy with Duchenne Our son, Fraser, is 17 and has DMD and ASD. He also has specific learning difficulties associated with DMD. I am sure that both parents and professionals would benefit greatly from this book. Many professionals who worked with Fraser in his early years, especially in mainstream educational settings, would have gained much from it. DMD is a rare condition and add to that the complications of behavioural and learning difficulties and there are few who have the skills and/or the will to go beyond the standard interventions. If they had had access to straightforward information about the issues and guidance on how to address them many difficulties would have been avoided. The book is a "go to" source of information, inspiration and signposting and will encourage parents to be more creative and assertive in trying to ensure their children have good lives. -- Julia Carr, Gateshead This book gives an excellent overview of DMD and provides a very valuable guide to the journey made for both parents and professionals. It has concise easy-to-read details on the complexities that come with DMD and practical tips. I particularly enjoyed reading about the inspirational adults with DMD and would highly recommend this book to all affected by Duchenne. -- Claire Bosanquet, parent to two sons with DMD The practical guidance included in this book, with chapters on behaviour, EHC plans, transitioning to adulthood and work, will be invaluable to all parents, educators and health professionals supporting a young person with DMD. It's a must read which you will return to again and again. -- Claire Binns, SENCO, Frederick Bremer School, Walthamstow This book is an accessible and actionable study looking at the lesser known barriers to learning and behaviour that young people with DMD experience. It guides teachers and parents to explore how starting early, self-determination, wellbeing and aspiration really matter, not just the focus on physical health. Essential reading for anyone involved in developing aspirations for young people with DMD. -- Margaret Mulholland, Director of Development and Research, Swiss Cottage School Development and Research Centre
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