Jack’s Journey

This is the exemplar on Acquired Brain Injury which forms part of the National Service Framework for Children. The exemplar illustrates ideal care which will ensure the extent of brain damage is fully explored by specialists and treatment is provided to meet new needs as they emerge as the child grows.

Jack’s Journey illustrates a coordinated, child-centred framework of services for patients, parents, carers and professionals. This is important due to the increasing number of children surviving ABI with greater disability or with disability that may not be immediately obvious but that becomes more apparent as the child grows. Jack’s treatment after his accident shows the valuable contribution made to his acute and aftercare from a number of professionals working together to ensure the extent of his injuries is understood and treatment suitable for his changing needs as he grows.

Although the exemplar uses a traumatic brain injury to illustrate the journey through services, encephalitis is mentioned as a cause of ABI and the exemplar has relevance for encephalitis.

Gilley the Giraffe … who changed
Written by Nimmi Channa
Illustrated by Phil Lynch

The book has been written by a mother for the siblings of her child recovering from encephalitis. Being the parent of a child recovering from encephalitis can be a bewildering and lonely experience. Being the young sibling of that child, or indeed the child him or herself can be equally bewildering. "How can he look the same brother, yet act so differently?" "What has happened to me?" "Why has he started having seizures?" "When will we be a normal family again?"

The story of Gilley is carefully and sensitively told, with appropriate language and a context within which young children can relate. Beth Wicks, Education Consultant, says “Having worked for many years with children who have suffered encephalitis, their families and schools, I know how difficult it is for children to understand what has happened to them. Parents and teachers are frequently at a loss regarding how to explain to a child why he or she feels different; becomes tired or irritable; can’t keep up at school or at play; or no longer has the same friends, particularly when they may not fully understand this themselves”.

Tony Eves, one of the Society's Trustees, was inspired to design and produce this special Gilley the Giraffe soft toy. Tony has donated the toys to the Society and all income produced, will go directly to the work of the Society.

Different Dan - How a family copes with childhood brain injury
By Jenny Tunstall & David Shum
Illustrated by Andrea Quinn
When Dan suffers a brain injury, all family members are affected - Dan himself, his brother. sister, mother, father, and Fuzzles the cat, too. Fuzzzles describes how family life changes and how the family copes with those changes. There are the practical changes, such as visits to hospital that interrupt family routine, and extra chores that the brother and sister must now do. There are cognitive changes, such as confusion and memory problems. And there are emotional changes, such as feelings of anger and loss. But the family discovers that talking about their worries, problems and feelings helps them cope.

Sam and the Green Velvet Monkey - a charming picture book for young children about a boy coming to terms with his brother’s accident and brain injury.
from CBIT www.cbituk.org/

Elvin, The Elephant Who Forgets - an illustrated book, suitable for younger children, that shows the struggles, emotions and confusion of a child with a brain injury.
from CBIT www.cbituk.org/

Learning from the Experts - A set of leaflets written by young people with an acquired brain (ABI), namely “the experts”. These leaflets offer information and tips to other young people with ABI. The set of 4 leaflets includes 1) an introduction, 2) ideas to help with school work 3) ideas to help at home and with your friends and 4) tips on managing fatigue.
from CBIT www.cbituk.org/

That's What Friends Are For - this book is aimed at 5 to 8 year olds and is based around a young child who is coming to terms with a diagnosis of epilepsy and looks at how the different reactions of his friends and family affect him. This book will be a particular help to young children with epilepsy and their siblings and friends.
from Epilepsy Action www.epilepsyaction.co.uk

So..... what is epilepsy?
Book launched to help children with epilepsy

Children with epilepsy, and their parents, have helped a Swansea team of specialists put together an easy-to-understand guide to help young people across. So..... what is epilepsy? is a clear guide with simple language and illustrations. It is aimed not only at children with epilepsy, but also their friends and classmates to help them understand the condition.

www.wales.nhs.uk/documents/swanseaepilepsyguide.pdf

My Mum has a Brain Injury
Produced by Angus Council

"Children of brain injured adults often feel lonely and isolated because of the way the injury has affected their mother or father. They may find it hard to get information from adults, and they often worry that in some way the brain injury has been their fault"

Wendy Murray
Service Manager
Angus council
Lunan Park Resource Centre
Guthrie Street
Friockheim by Arbroath
Scotland DD11 4SZ

My Dad has a Brain Injury
Produced by Angus Council

This book is "intended to answer a child's common questions and to help them to understand the nature of their parents ilness, especially trhe 'hidden disabilities' such as forgetfulness and irritability."

Wendy Murray
Service Manager
Angus council
Lunan Park Resource Centre
Guthrie Street
Friockheim by Arbroath
Scotland DD11 4SZ

When a parent has a brain injury: Sons and daughters speak out.
By Marilyn Lash M.S.W

Reviewed by Jon Ainley

Originally written in the USA, by Marilyn Lash for the Massachusetts Head Injury Association and now adapted and distributed in the UK by Acquire. The book recognises how important it is to listen to the sons and daughters that have a parent affected by acquired brain injury and how speaking out can benefit others similarly affected.

The book clearly acknowledges the isolation that is often experienced by sons and daughters, and how having a parent with an acquired brain injury often puts them in a unique situation that few people around them can truly understand. Through discussion the book highlights some of the more subtle issues that are often given little thought, except by those affected, such as the family not feeling the same since the incident or illness. Some people reflected on long periods of uncertainty and if the parent was going make it through the trauma or acute phase. Also highlighted is the confusion of having their parent home and trying to adjust to what is now a very different person and what their difficulties mean for the future.

The purpose of this book is not purely reflections but is also of value to any son or daughter that now finds themselves in this situation.

I would recommend this book to any family affected by acquired brain injury and it is a must read for professionals.

Children Also Grieve - Talking about death and healing
By Linda Goldman
This is an imaginative , fully illustrated, interactive storybook for bereaved children and those who care for them. The book follows Henry's progress through the different stages of bereavement and healing, and shows the various ways in which he and his family deal with their grief. The story poses questions throughout that encourage children to explore and share their feeligs about their own loss. The second part of the book is a "memory album" designed to be filled in and dedicated to the person they have lost.

This engaging book offers age-appropriate support for children coming to terms with loss. It also provides information for adults who support them, including typical responses to bereavement, and useful tips on how to talk about grief with children.

ISBN 1 84310 808 9
Special Offer for Encephalitis Society members.
£1 discount and free postage.
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Encephalitis – a parent’s handbook

The Handbook has been compiled by Elaine Dowell with advice and assistance from Working Together –children and young people, a steering group of the Encephalitis Society and Beth Wicks, Education Consultant. The project has been supported by the BBC Children in Need Appeal. The Handbook at over 100 pages is a comprehensive resource explaining what encephalitis is and directing parents through the maze of services, from health, social services and education, which are needed to maximize their child’s recovery. Parents own emotional needs are also acknowledged and addressed.

The Handbook will be provided free of charge to parents.

You can download a copy here: Parents Handbook (5mb – please be patient)

Online Shop

Reviews

Molly Bose, parent of a child who had encephalitis

The book has a beautiful feel about it. I am so moved by the wealth of information. This is a very exciting publication, full of interesting, vital and easy to understand information. Apart from being a parental guide, it should also be an invaluable tool for medical and academic institutions. On a very personal note, nearly ten years on since my daughter Priya was struck by encephalitis, I would not have felt so helpless and lost had a guide of this nature been available then. My deepest congratulations to everyone involved.

Dr Ngozi Oluonye, Consultant in Community Child Health
Edwin Lobo Centre, Luton teaching PCT, Bedfordshire, UK

When handed the book for the first time, after I agreed to review it, my first thought was that it seemed a bulky document which might be rather daunting for a parent of a sick or recovering child, to read. However, my fears were quickly allayed once I began to read. The contents pages and chapters are extremely well laid out with tabs indicating the beginning of different chapters, therefore making it easy for the reader to flip back and forth, in order to find relevant information. It is a book that is visually reader friendly. There are clear titles at the top of every page, with subheadings and bullet points breaking up the fairly detailed and, at times, rather scientific text. Textboxes are used to summarise definitions of terms and salient points, with a glossary at end of the sixth and final chapter.

The contents of the book cover the stage of the acute illness in hospital rapidly taking one through the effects of the illness, with a broad, yet detailed over view of the effects of encephalitis on the child, the pathway through the services, including education, and finally fairly extensively exploring the impact of the illness on the family as a whole.

At the end of the first chapter, is a flow chat which gives a useful over view of the child’s journey from the initial symptoms of the disease, through admission to the acute ward or Paediatric Intensive Care Unit, concluding with the discharge home and rehabilitation in the community. My only criticism of the flow chart is that whilst doing a great job of simplifying the pathway for parents, it gives the impression that all services work in a set way. It would have been useful for the authors to have stated that the purpose of the flow chart is to illustrate a broadly generic pathway through the system, but that services vary widely. In the current climate of inclusion, not every child who is referred to the Local Education Authority following rehabilitation from encephalitis will be issued with a Statement of Special Educational needs, as is suggested.

I have no other criticism of the book. Complex medical terms are explained in the glossary and information is provided about contact details for support groups. Finally, lists of further reading material are also included. I am impressed at the detail in the book. It is extremely well written, the focus being to empower, support and inform parents who have just seen their child weather a horrific illness and emerge a very different child, with needs they could never have envisioned. It comes highly recommended. A pocket version translated in other common languages should be the next endeavour of the authors. Well done.

14th May 2006

Planning to Learn

Creating and using a personal planner with young people on the autism spectrum.
By Keely Harper–Hill and Stephanie Lord

Intended as a resource for young people in the autism spectrum the book is very well presented indeed. Broken down into five key sections the aim of the book is introduce the concept of helping children take control through simple planning strategies.

Structured learning regimes have long been known as a prerequisite to a good learning environment for children in the autism spectrum. However it is not purely about structure alone as many of these children require basic skills to work within structured regimes and this is where this book comes into its own.

The introduction clearly explains the all too common problem of late diagnosis and how this very often presents for a child who on the surface appears quite able, but who is in fact struggling. For example, an outward picture of a child who appears disruptive and challenging for no obvious reason and perhaps who just ‘cannot be bothered’.  This is a key point made by the book and hopefully sets the trend that there are reasons why these children function the way they do rather than being seen as just plain awkward.

Unlike many resources available this book provides actual resource tools for helping children affected by autism organise their thinking.  The individual planners which the child plays an active part in making, provides a sense of ownership.

The book suggests the teacher/carer/facilitator making their own planner to get you as an individual into the role of being organised and think about what is required. This is also about creating good habits by setting the standard as it were.

The book suggests the use of video as a supportive aid to the use of role play to help children identify what helps or hinders their organising / learning. 

A particularly useful tool is the “Plans to Calm” section covered in topic 2. This looks at some basic skills to help children get back in control when things start to go wrong. Well being is promoted through the use of breathing skills and what is referred to as shaping gestures, where the individual uses self touch, for example: putting your hand on your chest to help regulate breathing.

Of particular note is the view provided on dealing with external triggers; that removing themselves may be a method of dealing with that situation rather than the situation erupting. Importantly though they also promote the concept that triggers are always going to be present from time to time and require working through rather than a complete withdrawal when life problems present.

Like all good teaching resources you are permitted to photocopy much of the content. The pictures are generally suitable for the younger child in particular, however with some adaptation the structure will be suitable for older children also.  

All in all it’s an excellent resource that can be applied not to just children and young people in the autism spectrum. It’s a refreshingly bright learning resource that many children will enjoy using, ultimately promoting self confidence and learning.

Jon Ainley, The Encephalitis Society

ISBN 978 1 84310 561 9

Management of Brain Injured Children
Second Edition
Edited by Richard Appleton & Tony Baldwin

The new edition of Management of Brain Injured Children provides a detailed account of brain injuries in children. It considers how common they are, why they occur, and how they may be prevented. It also explains how children are resucitated following the acute insult, and provides a comprehensive description of how the physical, communicative, educational, and behavioural effects are managed, in both the short and long term, and how this impacts on the family. A parent's experience of having a child who suffered a severe head injury provides an invaluable contribution, as does the account of her daughter, now a teenager. This book concludes with appendices detailing useful support organisations and relevant governmental and other agencies' publications. Referencing is thorough and up to date, providing readers with useful sources of information for additional reading.

ISBN 0-19-856724-3

Oxford University Press
www.oup.com

The Tavistock Clinic
Understanding your young child with special needs

By Pamela Bartram

Intended first and foremost for parents of young children with special needs, this book will prove beneficial to anyone caring for babies and children with complex needs.

Although the title itself states special needs the author makes it very clear early on in the book that a core aim is the individuality of the child.

There is a real sense of parental awareness in the book and I can see many parents saying “that’s just like me” or “that’s exactly how I feel” and this in itself is a powerful awareness tool, which says its ok to feel like this.

The author states that the book is not intended as manual or instruction book but to aid an understanding the developing child and for parents to design their own way forward in supporting their child.

Through the experiences of families the book covers some of the key milestones that many parents of a special needs child might encounter.

All said and done it looks a great little with plenty of references to other publications, resources and organisations.

ISBN 978-1-184310-533-6

Special Stories for Disability Awareness
Stories and Activities for Teachers, Parents and Professionals
Written by Mal Leicester, Illustrated by Taryn Shrigley- Wightman

Designed to support key stages 1 and 2 of the National Curriculum (England and Wales); this 155 page book is a superb resource for anyone wishing to raise disability awareness among children.

Using the medium of storytelling the lives and adventures of eight children with disabilities are individually told. Care has been taken to cover various types of disability, for example sensory impairment, learning difficulties /difference, mobility and emotional and behavioural difficulties. Cultural diversity is also strongly supported with some of the children coming from ethnic minority groups.

Refreshingly unlike many children’s stories the heroes of these stories are based on children who have a disability, with a core aim of promoting a positive approach to disability and breaking away from the potential stereotyping that can so easily develop within the everyday lives of children.

Supported by walk through instructions on how the book should be used it highlights the key aims and objectives to each story. The building of vocabulary through activity sessions is particularly useful given the complexity of the subject.

Clearly illustrated the book is very much a flexible learning resource and can be used independently or within other subjects.

In conclusion this book is a must have for anyone tasked with teaching or supporting a Child’s education.
ISBN 1-84310-390-7

So Young, So Sad, So Listen

Author: Philip Graham & Carol Hughes
Illustrated by: Christine Roche

ISBN 1-904671-23-3
Gaskell publishers

Reviewed by Yvonne McGahren for Contact a Family www.cafamily.org

The aim of this book is to help those involved recognise the signs of depression in children and to understand the possible causes. It is intended to help parents and teachers of depressed children as well as social workers, health visitors and family doctors. The introduction outlines some accounts of depression described by a mother, a teacher, a psychiatrist and a fourteen year old girl. This is interesting to get different perspectives. It also indicates some symptoms such as changes in appetite, disturbed sleep and self-blame. The book also looks at various forms of depression and at what types of treatment are provided. There are brief outlines of Group therapy, Family Therapy and Medication for example. This book does not go into lengthy detail but it’s a useful guide for anyone concerned about someone they suspect may be depressed. It highlights that sometimes depression strikes when young people are going through an already confusing and stressful period as it is and there is a useful section on aspects of listening and an Action sheet for parents and teachers.

Surviving the Special Education Needs System
How to be a Velvet Bulldozer

By Sandy Row ISBN 1-84310-262-5 £12.95

Reviewed by Yvonne McGahren for Contact a Family www.cafamily.org

This is a practical survival guide, written with genuine empathy from a person who has journeyed through the Special Educational Needs system. Sandy and her husband are parents to four adopted children, all of whom have special educational needs. There are chapters specifically about their children which detail various problems and behaviours and why getting a diagnosis was so difficult.

There is information about what a statement is, how to prepare for a tribunal, appealing, jargon busting and frequently asked questions. It’s very useful to prepare you for what lies ahead at various stages. Her intention in writing this book is so readers can learn from the mistakes she and her family made whilst attempting to get the help they needed and to assist in some way to help overcome some of the many obstacles. She relates the isolation and difficulty but also the determination and resilience against the odds. The stress of the continual fight with authority is frustrating but she advises you not to be daunted and that now her children are receiving the correct help they are much happier. Sandy has set up a website:
www.special-educational-needs.co.uk

Helping Children Cope with Pain

The Charity, Action for Sick Children has produced a series of booklets, including this one, specifically designed to help parents, help their children deal with pain when sick, either in hospital or at home.

1: Pain explained:

• What is pain?
  
• How can you know your child is in pain?
  
• Why is it important to manage pain properly?
  
• Can I do anything?
  

2: Pain control with drugs:

• Is there any such thing as perfect pain control?
  
• Do some children need more pain relief than others?
  
• Pain jargon explained o What are the different options?
  
• How are these drugs given?
  
• What about pain-killing injections?
  
• What about severe pain?
  
• How is long-term pain dealt with?
  
• What about a long-term problem with sudden attacks of pain?
  

3: Pain control without drugs:

• How you can help your child cope
  

4: Questions and Answers on Pain for young patients

This booklet can be purchased as part of the Parent Pack series (top Link) or viewed from the lower link
www.actionforsickchildren.org/parentspain.html

www.actionforsickchildren.org/parentspack.html

A Special Child in the Family
Diana Kimpton

This is the book I searched for in vain when I learnt my own two boys were incurably ill with cystic fibrosis. I was frightened of my own emotions and I needed to know that it was all right to feel so bad. I needed a book written for parents rather than about them, a book which did not just list the problems I was having but also suggested ways I could improve matters. In the end, I gave up looking and decided to write it myself. This is the result.

via our Amazon link

Children with Emotional and Behavioural Difficulties and Communication Problems
There is always a reason

by Melanie Cross

Children and young people with emotional and behavioural difficulties (EBD) are far more likely to have communication problems than their peers. Exploring the ways in which children's language and emotional development are linked, Melanie Cross considers the reasons why behavioural and communication difficulties often occur together.

Identifying the common causes of these problems and the reasons why they often go undetected, she provides practical guidelines for assessing communication skills and the complexities of identifying communication problems in children, including children in public care. She shows how improving children's communication can also improve their behaviour and that speech and language therapy is an important, although often absent, service for children with EBD.

With a range of strategies to help children and young people to develop their emotional and communicative skills, this accessible guide is an invaluable resource for speech and language therapists, social workers, teachers and other health professionals working with young people with emotional, behavioural and communication problems.

Jessica Kingsley Publishers

Paperback 1-84310-135-1, 2004, 192 pages, £15.95 $26.95

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax

Educating Children With Acquired Brain Injury
Sue Walker & Beth Wicks

Teachers have to be aware of their pupils' special educational needs. Find out what an acquired brain injury is and how to maximize learning opportunities for those with the condition with this book.

The book should help you to: support pupils with an ABI by using appropriate teaching methods; be alert to the social and emotional difficulties experienced by pupils with an ABI; work in partnership with families and other professionals following helpful guidelines; and access all the information you need with a glossary of terms and a list of resources and organizations.

Publisher: David Fulton Publishers
ISDN: 1843120518
www.fultonpublishers.co.uk

A guide to support for adult learners caring for disabled children or other family members’

Covers the full range of education and training options, and sources of support, for adult learners who are also family carers.

You can download a copy of the Guide from: www.nuffieldfoundation.org  or copies can be obtained from: Elizabeth Nuffield Educational Fund, 28 Bedford Square , London WC1B 3JS Tel: 020 7631 0566  e-mail: publications@nuffieldfoundation.org

Growing Up with a Chronic Disease
The Impact on Children and Their Families
by Christine Eiser

From: British Medical Journal
Christine Eiser's well researched message is that compliance and prognosis can both improve when those growing up with a chronic disease feel better understood. By such improved interaction, both the carers and the cared for are significantly more likely to exchange sinking hearts for lifted spirits.
British Medical Journal

From: Maternal and Child Health
This is a book that will be of value to all professionals working with chronic childhood illness. It should certainly be in every paediatric library, and on the shelves of any mental health professional who works with this group of children.
Maternal and Child Health

From: Disability Times
combines practice and research in such a way as to make it of value to psychologists, social workers, nurses and doctors, as well as child care specialists.
Disability Times

Jessica Kingsley Publishers

Paperback 1-85302-168-7, 1993, 240 pages, £16.95 $29.95

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Living with an Aquired Brain Injury During Childhood and Adolesence
An Irish Perspective
Caroline Heary, Diane Hogan and Colm Smyth

Children's Research Centre, Trinity College Dublin
www.tcd.ie/Childrens_Centre
ISBN 190 223 0175

Management of Brain Injured Children Oxford Medical Publications
Appleton, R. & Baldwin, T. (Eds) 1998)

Pp 272, ISBN 0-19-262794-5 (hardback) £49.50 0-19-262793-7(paperback) £27.00.

Missing Out

The Lifelong Impact of Children's Aquired Brain Injury
a briefing paper prepared by Sophie Petit-Zeman for the Children's ABI Interest Group

Moving on - to Adult Life

A resource pack for young people with disabilities and their families, there is also a Guide for Staff”. The pack and guide have been written by a group of parents based in Fife in Scotland. They are intended to help young people who have additional support needs and their families to plan for the future. They are available in both book and CD form from Outside the Box Development Support www.otbds.org

People Skills for Young Adults
by Márianna Csóti

People Skills for Young Adults is a complete course in social skills training for students in their teens, and is particularly appropriate for those with mild learning difficulties.The book is practical in emphasis, and comprises a series of lessons accompanied by teacher sheets. Examples of scenarios are given, and students are encouraged to act them out and discuss the issues raised in them. There are also role plays and student help sheets, which develop the areas covered in the lessons. The areas include:

• friends and relationships
• personal development
• self-confidence and shyness
• assertiveness
• counselling and listening skills.

Full guidance and practical suggestions are included, so that teachers do not require any previous experience of teaching this subject.

Jessica Kingsley Publishers

Paperback 1-85302-716-2, 1999, 192 pages, £17.95 $29.95

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Social Awareness Skills for Children
by Márianna Csóti

Children, particularly those with special needs, can require considerable help in learning how to relate to other people and how to behave positively and appropriately in social situations. In this practical and helpful book, Marianna Csoti emphasises the benefits that learning communication and social skills can have for these children, including better friendships and increased self-esteem. The numerous detailed tasks and practical examples enable parents, professionals and carers to work with children on improving their social skills and social awareness, and respecting themselves and other people. Topics covered include: Helping children with special needs; making and keeping friends; social rules; body language; feelings, including shyness and anger; listening skills and social safety.

Suitable for use with children aged 7-16, on a one-to-one basis or in small groups, this practical and comprehensive book will be an invaluable resource for anyone wanting to help children to increase their social understanding and awareness.

Jessica Kingsley Publishers

Paperback 1-84310-003-7, 2001, 320 pages, £19.95 $34.95

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Special Educational Needs (SEN): A Guide for Parents and Carers

Published by the Dept for Education and Skills
Sets out the main points of the Code of Practice, explaining procedures and informing parents of their rights.
You can look at this publication on the website www.teachernet.gov.uk/ or get copies from DFES Publications Centre, PO Box 5050, Sherwood Park, Annersley, Nottingham NG15 0DJ Tel: 0845 602 2260 quoting ref. DfES 0800/2001

Brothers and Sisters

A booklet for families looks at how to help the siblings of disabled children. It gives parents simple but crucial advice on prioritising, coping with feelings of guilt and problem solving.
Copies of the booklet £8.50, incl. postage and packing, are available from Sarah Barrell; PO Box 95, Witney, Oxfordshire. OX29 4WJ

Brothers and Sisters of Disabled Children

By Peter Burke Through family interviews and one to one meetings, Peter Burke records siblings’ views on issues ranging from the everyday social concerns about the future.

Jessica Kingsley Publishers

ISBN 1 84310 043 6

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Bringing Up a Challenging Child at Home, When Love is Not Enough

By Jane Gregory

Jane Gregory takes us through life so far with her daughter: the slow, chilly realisation that she was not developing normally, the refusals by health professionals to take her concerns seriously and the stress of coping with violent, obsessive behaviour whilst caring for two young siblings. Jane shares these experiences and the effect they had on her family candidly in a book full of energy and compassion.

Jessica Kingsley Publishers

ISBN 1 85302 874 6

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Schools for Special Needs: A Complete Guide

Schools for Special Needs explains the system and processes involved in special needs education and offers parents comprehensive, independent advice on those areas that concern them most.The definitive guide to special needs education in the UK, fully revised and updated for this new edition. Written by Gabbitas Educational consultants, published by Kogan Page via our Amazon link ISBN: 07494696X

Surviving the Special Educational Needs System
How to be a ‘Velvet Bulldozer'
by Sandy Row

‘Our children were supposed to be "included" in mainstream but in reality were "excluded" until they went into special needs placements where they were accepted and valued, exactly as they were, even though that was different to the "norm". They are polite, kind, decent people – but people who have difficulties.' – Sandy Row

Sandy Row has four adopted children, all of whom it has transpired have special educational needs, all on the Autistic Spectrum (Asperger's Syndrome, Semantic Pragmatic Disorder). Some have ADHD, Dyslexia, Auditory Processing Disorder and Dyspraxia as well. Sandy and her husband have battled for years to achieve accurate diagnoses, Statements and assistance for the children – fighting two Tribunals against the LEA barristers on the way. 'A pea-shooter against a tank,' as she wryly comments. Finally they feel hopeful about their children's futures and want to share their story and the useful contacts and information they have gained during their journey. Sandy kept reading books that told her what should happen. Her book tells you what actually does happen!

Some children's ‘difficulties' do not present in an obvious way, which makes diagnosis problematic, and access to help unforthcoming. This was the experience of Sandy Row, who, after a decade of misdiagnoses and unsatisfactory explanations for her children's struggle in mainstream school, realised that her children had special educational needs (SEN) and began her long quest for help from the SEN system.

Row's testimony illustrates how the special educational needs system works and empowers other parents to demand help for their children who have special educational needs that require attention. This frank and practical book challenges the theoretical and often impenetrable established literature on SEN, and instead provides an accessible and effective resource for those needing advice and answers about their rights to services and help for their children.

Jessica Kingsley Publishers

Paperback 1-84310-262-5, 2004, 256 pages, £12.95 $19.95

Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website, phone, post or fax.

Swimming through Treacle

A family’s guide to services for children with an acquired brain injury in Wales.
from CBIT. www.cbituk.org

Traumatic Head Injury in Children New York, Oxford:
Broman, S.H., & Michel, M.E. (Eds.) (1995)

www.oup.com Oxford University Press, Pp 299. ISBN 0-19-509428-X £35.00

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Visual Perception Problems in Children with AD/HD, Autism, and other learning disabilities
– A guide for parents and professionals
by Lisa A. Kurtz

Reviewed by a parent of a child with visual difficulites following encephalitis.

The primary focus of this book is to help children who are able to see clearly but have subtle visual difficulties that impact on their learning and behaviour. It is written for parents, teachers and other professionals working with children with developmental delays.

The book is neatly divided into logically progressing chapters starting with a very clear explanation of the anatomy and structure of the visual system. This leads into the early development of visual skills and associated problems and is followed up with advice on how to find professionals who can help. There are suggested activities for improving visual skills and strategies for coping with this disability.

The book finishes with a useful glossary, a recommended reading list as well as a list of supporting organisations. Unfortunately, as the book is North American, very few of these organisations are based in the UK.

The book is easy to read and understand and many helpful definitions as well as explanations of the extensive range of tests that children may be subjected to.

The book is primarily written for children with subtle rather then severe visual difficulties. In the first chapter, cortical blindness and optic nerve atrophy are described as conditions caused by infection resulting in severe visual impairment as well as other developmentally disabling conditions. Therefore, this book may have a limited use for helping children who have cortical visual impairment as a result of contracting encephalitis. Having said that, the book is full of useful general advice on how to help children with visual impairment as well as providing a good understanding of how visual impairment can impact on daily life and I would recommend this book to anyone with a child with visual impairment.

Jessica Kingsley Publishers

ISDN 1 84310 826 7

Newsletters

Most support organisation produce newsletters containing up to date information, articles and notice of meetings. The following are particularly recommended.

• Share an Idea produced by Contact a Family
  www.cafamily.org 
• Parnet produced by Cerebra
  www.cerebra.org.uk
• Waving but not Drowning produced by Working Families
  www.workingfamilies.org.uk

The Acquire

The Acquirer is an independent magazine which aims to serve the interests of the community of people involved in the education of children, young people and adults who have an Acquired Brain Injury.
43/45 Stanley Road, Warmley, Bristol BS15 4NX
Email sian@whitefieldhouse.freeserve.co.uk