You and Your Disabled Child ‘A Practical Guide for Parents
by Margaret Barrett
Review by Karen Hughes Regional Rep (Wales)
This book is an excellent resource for parents and other family members with a disabled
child. It is especially helpful for parents who have recently been told their baby
or very young child has a disability. It provides both practical and emotional advice
and guidance in a very easy to read format. The book is both useful as a reference
to just dip into individual chapters as and when needed or reading the book as a
whole provides a comprehensive guide to coping with this new experience.
Her book is divided into seven chapters which are clearly identified and take the
parent on a journey from the initial reactions to the disability, through to encouraging
the child to be very independent, exploring his surroundings safely and avoiding
over protection.
Chapter 1 General Coping Strategies deals with the initial feelings of having
a child with a disability. It discusses how it can be a very difficult time with
a variety of emotions and then offers practical advice as to how to cope with all
of this and have realistic aims for both the parent and the child. She encourages
the parents to recognise that they to need to be cared for and allowed time for
themselves in order to give the best to their child. The most important message
of this chapter is ….to see the child first and then the disability.
Chapter 2 The need for Stimulation and Interaction has a wealth of practical
advice about how to begin to interact with your child to provide stimulation without
feeling the need to over cuddle the child and not put him down.
Chapter 3 Encouraging Physical Development explores practical ways with plenty
of examples and ideas, to promote physical development with a disabled child. This
chapter also uses physiological and biological explanation to highlight the full
benefit of each idea. This is extremely useful in helping to understand the child.
Whilst it provides a depth of information the terminology is very straightforward
and easy to understand.
Chapter 4 Encouraging Intellectual Development considers ideas of how to
stimulate all of the senses in order to promote the child’s independence, through
movement and exploration. It also outlines the importance of language and interpreting
non-verbal cues.
Chapter 5 Encouraging Social Development provides helpful ideas about encouraging
interaction with other children both disabled and non-disabled. The chapter discusses
how the parents may feel very protective but that it is essential to allow their
child to explore and allow other children to ask questions. It continues to highlight
that parents should allow full social interaction and experiences that you would
with a child without a disability; otherwise the world can become very isolated
and narrow.
Chapter 6 Encouraging Self-Help suggests ways in which the child can help
himself. It describes how this is a fundamental stage for the child’s development
but how some parents find this stage difficult as they naturally feel that they
want to help the child as much as possible. However the chapter continues to discuss
how this can be detrimental and lead to learned helplessness. It also explores the
notion of not keeping the child a baby and gives ideas such as trying to use age
appropriate activities etc.
Chapter 7 Encouraging Good Behaviour talks about the need for the parents
to recognise that some of the child’s behaviour will be the same as all young children
and not just a result of their disability. Therefore it is important for parents
to feel able to correct inappropriate behaviour and not excuse it because of the
disability. It explains how all children need boundaries and to know right and wrong
and how this will help with positive interaction with others.
You and Your Disabled Child challenges the way a parent may initially think or behave,
in order to provide practical suggestions to promote the most positive outcome for
the disabled child. It also discusses how negative feelings and disappointment are
perfectly normal and to be expected. It almost gives permission for the parents
to be allowed to have these feelings, but then provides practical advice and guidance
about how to cope with this.
I would thoroughly recommend this book as a useful tool for all members of a family
with a disabled child.
Support us by buying this book via our
Amazon link
Endal
Allen and Sandra Parton
This heart-warming book tells how a puppy who was trained as a service dog but dismissed on health grounds came to be voted ‘Dog of the Millennium’ and how, through his remarkable skills, companionship and unstinting devotion, he gave Allen Parton a reason to live again.
Told through the eyes of both Allen and his loyal wife Sandra, the book covers the years after Allen’s accident in the Gulf War and before Endal’s arrival when Allen’s brain injury had left him bewildered and confused, unable to return to the Navy job he loved, and refusing to come to terms with his disabilities. Allen twice tried to commit suicide during this period such was his despair.
Sandra was a nurse so thought she could cope when her seriously injured husband was sent home but nothing prepared her for looking after a man who bore so little resemblance to the warm, funny, loving man she had married. He shared none of her memories and was unable to think of anyone but himself leaving her virtually alone to bring up their two children, making ends meet and keeping her husband alive.
When by chance Allen encountered Endal and the two ‘adopted’ each other the determined Labrador gave Allen back his independence. The dog learnt over 200 commands to help his master complete everyday tasks such as getting dressed and going out to the shops in his wheelchair, but more importantly Endal was the reason for Allen to communicate with the outside world, and to once more become a caring husband and father. Endal is their inspiring story.
I was upset to learn as part of writing this review that Endal sadly passed in March this year shortly after the book was published. Like other dog owners I know what a devastating loss losing our canine pals can be so all my thoughts are with Allen and his family at this time. RIP Endal.
Book Review by Ava Easton
Support us by buying this book via our Amazon link
Guerrilla Mum
Surviving the special needs jungle
by Ellen Power
This book is an essential guide for any parents or carers of a child with a disability.
If you need help and guidance with securing a educational statement to support your
child’s learning or even to get a place in the correct educational provision this
is important reading.
The book has eight chapters which are easy to read. Ellen writes about her own experiences
of the education system, the pros and cons of how she dealt with things and how
to improve on them. Each chapter gives you useful tips and pointers for example
always keep notes of people’s names so you can refer back at a later date if needed.
There is a checklist at the end of each chapter which is extremely useful. Ellen
also points out that you are your child’s best advocate, no other person will fight
as strongly or as well as you will- a hard thing to read if you are struggling with
things, a big reality check but so very true.
The first chapter deals with identifying your child’s special needs, first signs
and how to access the services needed to set you on your way to a statement.
Chapter two talks about getting the correct mainstream education for your child.
It states the education act, and the Statement of Educational Need (SEN) code of
practice that schools must follow. It informs you of the things that are needed
to make sure the school and education department are doing their jobs correctly
in making sure your child receives the best education possible, a much needed role
that can only to be carried out by you unfortunately.
Chapter three shows in detail the process that needs to be followed by parents,
schools and the education department for your child to receive a statement. There
are examples of letters you may need to write and forms you may need to fill in
and there is also a copy of an educational statement. Chapter four “When things
go wrong” as they inevitably do is a very important chapter giving you tips on how
to put things right. This part explains how to negotiate with the Local Education
Authority (LEA) and the organisations that can help.
Chapter five “How to complain effectively” lists the people you may need to address
your complaints and how to do it. Even to the extreme of getting the media involved
to highlight your plight.
Chapter six “How to ensure your child is happy and safe at school and dealing with
bullying” highlights the importance of building good relationships with teachers
and the school in general, to enable the best for your child’s happiness.
Chapter seven “Support for carers” shows how to take care of yourself in many ways
including financially. Chapter eight “The Disability Act” points out your child’s
rights within the school, their duties to your child and how to appeal against anything
if you need to do so.
Guerrilla Mum is well organised, it is easy to follow and also to refer to if unsure
of your child’s legal rights. Everything you need to know about education for special
needs is here in this guide. This book is one I wish I had written myself, well
worth reading and I thoroughly recommend it to any parents or carers of children
with additional needs.
Review by Debbie Mumford, Surrey Regional Representative
Support us by buying this book via our Amazon link
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 feelings 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.
Quote The Encephalitis Society Special Offer when you order through the website,
phone, post or fax
A Special Child in the Family
By 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.
Buy via our Amazon link
Special Educational needs (SEN) - A guide for parents and carers
This guide aims to help you understand:
- what special educational needs are;
- what you can do if you are worried that your child may be having difficulties at,
or before, they go to school;
- how you can help your child;
- what early education settings and schools can do to help your child;
- what local authorities and other services can do to help your child; and
- your rights and your child’s rights.
Download the guide
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.
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
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.
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.
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.
Swimming through Treacle
A family’s guide to services for children with an acquired brain injury in
Wales.
Buy from CBIT. www.cbituk.org
Last modified: June 2011