Spastic Quadriplegia

“A compelling must-read.” 

“This book opens with the observation that the parent is the expert of their child while the professional is the expert of the condition. In fact, the book will go a long way to help the parent—or, indeed, the adult with spastic quadriplegia—to become an expert in the condition themselves. It will equip parents and adults with the condition to understand the bigger picture of spastic quadriplegia, whether that’s by using it to come to terms with the diagnosis and preparing for a lifetime of challenges ahead, or to dip back into after being bamboozled with potential risks, therapeutic recommendations, and alternative treatment options at a medical appointment. The book methodically breaks down the latest evidence-based research into laypersons’ language. It is a must-have resource for every family of a person with spastic quadriplegia.”

“This book presents clear and concise explanations and eliminates the confusion caused by misinformation online. It has helped me realize that we are not alone; there are other families just like ours experiencing the same highs and lows, joys and sorrows. It will provide comfort and hope to families striving to adjust to a new and oftentimes difficult diagnosis.”

“I highly recommend this book for parents, clinicians, and individuals affected by spastic quadriplegia. The authors provide a clear explanation of the diagnosis and treatments, empowering parents to engage in meaningful discussions with medical professionals. The journeys of individuals and families are woven throughout the text, highlighting both their struggles and their joys. This book is a must-read!”

“This comprehensive guide goes beyond the clinical picture of possibilities, issues, and conditions associated with a diagnosis of spastic quadriplegia. Cowritten by a parent and with personal stories from individuals and their families with this more complex form of cerebral palsy, it offers insider insight, practical tools, and helpful advice. This book is easy to navigate and covers the lifespan; it will serve as a great starting point when new issues arise and will guide the reader to the next step in care. This insight is backed up by facts and statistics that remind us that we are not alone on this journey.”

“I began to read this wonderful book whilst on a flight and was happily appreciating its content and layout when I came to one of the ‘orange boxes’: Kate’s story describing Levi’s birth and perinatal trauma and the impact on both her own and her husband’s life. It suddenly hit me that Kate’s story was also mine. Twenty-seven years ago, I, too, had a silent placental abruption during mid–first stage of labour with my beautiful son Conor. He was born covered in blood and clots and was unresponsive. Reading the book, I relived the sadness and pain and feelings of regret that ‘it’ had ever happened. But I am not stuck in that time. I have moved on hugely, have survived, and have ultimately accepted Conor for the person he is today. Indeed, I very rarely think of what could/should have been. He lives in supported accommodation and is hugely loved by his dedicated carers. He is also very much loved and a vital part of our family. He visits on Sundays, and we go for walks; he tastes small amounts of chocolate, and he even goes to the pub with us while we have a drink!

The family story told throughout the book contains wisdom and honest insights into the feelings and thoughts that accompany parents on this journey with a disabled child; they are invaluable for families and clinicians alike. It addresses what to consider when making the many care decisions, such as whether there is benefit in continuing a specific therapy if the child is not enjoying it. The photos brought the family story to life and reminded me of the many hours I spent swimming with Conor during his baby days. He loved the warmth of the water and the freedom that the buoyancy gave him.

The book is beautifully laid out and so user-friendly; it’s suitable for all levels of knowledge, and you can dip into whichever part of the book that answers your current query, whether it is in relation to feeding, growth, respiratory issues, mobility, surgery, or more. The photographs are really wonderful with so many smiling faces using the many assistive/adaptive technologies available today.

The section on transition to adulthood raises a very important issue and is an area every country needs to work on. It is so important that parents be allowed to enjoy their late-middle and old age without having to worry about how their child will be looked after when they are no longer able to.

Congratulations on a really wonderful book!”