At last, the book parents of disabled children wanted to read has been written ... by them.  A group of parents from Ryedale Special Families, North Yorkshire joined together four years ago to share their experiences.   They realised they had the authority to write this book about facing the challenge of who their children were.  Each parent has confronted different situations - Autism, Cerebral Palsy, Down’s Syndrome, learning disabilities and having babies in special care units.  What they had in common was a world that didn’t understand and that world sometimes included families and partners. 

The result is Altered Images: Becoming parents of our disabled children.  It is written for other parents, to guide and sustain them on the complex journey ahead.  The book explores diagnosis, dealing with the professionals, decisions about schooling, independent living and family life.  It includes different types of writing: diary extracts, autobiography, poetry, opinion pieces and wry observations on life.  What sets this book apart is its truthful and unsentimental account of a life very different from that which any parent expects.  The book does not provide easy answers nor does it have a feel - good happy ending.  Altered Images tells it as it is ...the highs, the lows, the good and the bad.

This is not just a book for parents.  It is a book for anyone who needs a better understanding, especially professionals working with these families. They will gain an unparalleled insight into the daily lives, struggles and pleasures of ordinary people with extraordinary children. 

The professionals, that brigade of experts who march into your life, often into your house, where they drink all your coffee, tell you a hundred things you don’t want to know or alternatively keep everything totally secret with the tenacity of a member of the French Resistance under torture.

There’s a paediatrician for the whole child and a consultant paediatrician for all the bits where something is wrong.  Hal had experts for eyes (5), ears (2 and a nurse) and teeth (2).  He had a speech therapist – they are not only for speech (which he can’t do), but also for language and communication, and swallowing as well.  That’s thirteen already and we’re only down to the neck.

Described as a collection of writing about being and becoming parents of disabled children, the book reflects the character of the different authors and the different journeys they have taken with their children. Not all the children have survived.

It reflects the diversity of views and the kaleidoscope of different emotions often held simultaneously as parents face the harsh reality that fate has given them. It is divided into different sections corresponding to the stages of that journey concluding with the "The job of a lifetime" an ideal job description of such a parent

A mother applauds the candour of an orthopaedic surgeon "Twenty years ago, when Tom’s orthopaedic surgeon held that tiny deformed foot in his hand he told Tom it was a cruel world. He turned to me and spoke with a directness that most doctors seem afraid of. We spoke the same language"

Star Boy, a story of David a little boy with Down’s Syndrome written by his father (striking a chord with BAACH members’ Star emblem after the Star Thrower story) "Some bonds cannot be broken by death. The oneness of love and family seemed unbreakable before the humility and eternity of the altar. He will always be my son, always a brother, always the first born and always part of our family. And I will be his father for eternity." This contrasts strongly with David’s mother’s letter "Dealing with God "concluding with "Makes no sense. Full stop."

As parents, paediatricians and human beings we continually strive for answers that are beyond our understanding. One of the bereaved parents draws comfort not only from not having answers but having reached a stage where she feels she no longer needs them. This is something of course we all have to sort out for ourselves and come to a solution we can live individually live with

I found it a book I could only take at small portions rather than read from cover to cover at a single sitting. That is not in any way to undervalue it but rather because it forced me to think and consider from the parents’ perspective.

I would have liked more articles from fathers, and also on the doctor’s journey as relationships between the doctor the child and their family ideally mature through trust and growing friendship and how they can continue beyond the death of the child.

The sections on education I found particularly enlightening and the evolution of the debate from special education to full on inclusion irrespective of the needs of the child is poignantly put.

It is clear that parents of children with special needs value two distinct types of honest conversation, the first with the professionals who are charged with managing their child, the second with parents who have been down this road before them.

I believe that this book does what it says in being what the authors would have wanted to have read when they first started on their journeys. It emphasises the harsh reality, the inescapable suffering and frustration with no miracle doctor or cure on hand to heal.  The hard and all too often undervalued (from Society’s perspective) burden that it places on disabled children and their carers is also frankly stressed, as are the authors’ reasons for their contributions and for some their ongoing personal difficulties.

Whether it can be described as an important contribution to disability literature I believe it is far too soon to tell. Nevertheless I would unhesitatingly recommend that Paediatric Departments purchase it for all their staff to read and also to have it available for parents or prospective parents, (where there is a confirmed antenatal diagnosis), to read at the start of their journey with their own "Star child."