Extreme parenting: parenting your child with a chronic illness

By Sharon Dempsey
London, Jessica Kingsley Publishers, 2008. ISBN 9781843106197.

Written in a thoughtful and calm manner, Extreme parenting is a book that will support parents and families of children living with chronic illness. The book aims to identify areas of common concern to families and to develop an approach that will encourage children to develop and lead a full life. Parents who read Extreme parenting will gain insight into the author Sharon Dempsey’s experience of parenting her young son Owen through hospitalisations, returning to school, family life, medical necessities and home care. Quotes from other parents who have children with chronic illnesses also add depth and a personal dimension. Although written in a British context, the experiences are also relevant to Australian families. Communication strategies and advocacy are common themes throughout the book.

Extended families and close friends will find this book helpful in developing an understanding of what supportive care means. People genuinely wanting to help can gain insight into areas where they may be able to assist, depending on the needs of the family. It was thought provoking to read about how helping the siblings and parents in daily life will also benefit the child who has a chronic illness.

The section on schooling is important. It draws attention to the role school plays in academic learning as well as social interaction and friendships. Children need understanding and to feel like they are included. A child who is chronically ill and has repeated hospitalisations may experience fear and anxiety on return to school. Teachers and students who are prepared and understand about the child’s illness are in a better position to make returning to school a more positive experience for everyone. Dempsey gives examples as to why teachers may be reluctant to have a child with a chronic illness in their class. She also draws on her family’s experience to provide examples of how Owen’s teachers and friends enabled Owen to feel part of his school life even when away from school. Parents can advocate for their child and foster understanding within the school by providing information and updates.

Medical professionals who read Extreme parenting will be able to think about the child within the context of their family as well as the role parents play in doing the best for their child within the healthcare environment and at home. The aim is to help parents do the best job they can so that the child is given the best possible care. Some of the psychological issues facing families and the role of the child in participation in treatment decisions is considered. Adolescents, in particular, will benefit from taking part in decisions about treatment and care plans. Special considerations regarding privacy, peers etc. are also relevant to adolescent development and hospital care.

For families who have a child with a terminal illness, there is a section on hospice or palliative care. This chapter is written in a compassionate and supportive manner.

Find at the end of each chapter Action points that will review the main themes and direct readers into action. These pointers are helpful reminders and make organising easier. Contact organisations, reference and bibliography lists at the back, not only show the book is well researched but guide readers to other interesting resources.

Extreme parenting is a book written to benefit families with a child with a chronic illness. As growing numbers of families find themselves meeting challenges addressed in this book, our communities will gain much needed awareness by reading this book and others like it.

Reviewed by Jillian Rattray
AWCH Librarian
November, 2013

Book Review: Extraordinary Parenting

Extraordinary Parenting’  is a helpful manual written for parents who have children with chronic physical or medical conditions. The book is set out in a readable format with clearly presented information. You will find simple illustrations, photographs and a bibliography. In addition, it is written in an Australian context.

Ordinary children are faced with extraordinary circumstances and in the book parents are given psychosocial information to support their children. Topics covered are varied and range from looking at a child’s psychological and emotional world to experiences such as hospitalisation, medication taking, sleep overs and camps or life in the school playground.  Extraordinary parenting encompasses child development stages and age appropriate information for up to early teens. There is an emphasis on raising awareness of what a child and family may be experiencing whilst looking at important emotions such as anxiety, self-perception and depression. Parents are encouraged to focus on their “best intentions” rather being caught up in guilt. Find an abundance of practical information, for example throughout the manual at the end of each chapter, readers will find the heading “Psychological protection : what you can do”.  Children and families can build understanding and develop skills for good self-esteem and resilience.

The author draws on her experience of over 20 years from working children, adolescents and adults in the fields of psychology, social work and literature. Dr Bruce works in private practice at the Emotional Health Centre, Cheltenham, Victoria. Extraordinary parenting can be viewed online in chapter format and/or purchased at: http://www.emotionalhealthcentre.com.au/page.php?id=557

The AWCH library holds two copies and both are available for loan.

Extraordinary parenting : protecting self-esteem and minimising depressive outcomes in pre-adolescent children who have significant medical or physical conditions (Cover title: Extraordinary parenting : a manual for parents of children aged 0-12 with chronic physical or medical conditions). Emotional Health Centre, Cheltenham, VIC. 2007, 168 p.  ISBN 9780980420609.
By Dr Elizabeth J. Bruce PhD, edited by Dr Cynthia L. Schultz, illustrations by Colin Bruce
Subjects:  Chronic diseases in children – Psychological aspects. Chronically ill children – Family relationships.  Chronically ill children – Education. Chronic disease – In infancy & childhood.

 

Review by:
Jillian Rattray
AWCH Librarian

The Magic Number

Self discovery is a wonderful thing and I believe we are evolving as individuals every day. But often those with a chronic illness reach a particularly bad patch during their lives, one which shatters their world.

From my conversations with various other people and professionals it seems the magic number for those with complex or chronic issues is that of 20-something. You reach 20-something and your health does a belly flop and you wonder where the good days went. I myself as a 20-something year old hit my bad patch roughly two years ago and it took me almost 2 years to stabilise and come to terms with my new ‘normal’. The biggest realisation was how stressful my life actually was and how it was impacting on my already problematic health.

We live in a world which is so fast paced and over scheduled that often we forget to take the time out for ourselves (which I am very guilty of) which is so vital when you have a complex or chronic health issue.  Having the ability to stop and say ‘leave me alone I need to do something for me’ is what has brought me to my new ‘normal’. For me it was a trip to Thailand before I realised that my job wasn’t helping my health amongst other things and after much anguish I made some terrifying (initially) sacrifices which in turn helped me stabilise, reduce my medication intake, become happier and less sore.

I am writing this now as with the lead up to Christmas everyone is stressed and sometimes we don’t even realise what the stressors are to remind us (including myself) all to do something each day for yourself, go for a walk, take up fencing, play with your pet, lie in the grass and look up at the clouds. If it all gets too much remember there are services you can access any time of the day or night to help you through the silly season, your health transitions and life. GP’s are a fantastic first point of contact but if your not comfortable talking to yours or you don’t have a ‘good’ GP then there are services such as below available for you.

At the end of the day we are all on this roller coaster together!
 

This Blog was contributed by:
Michelle Taylor
AWCH Youth Representative

DISCLAIMER: The views expressed here are solely those of the author in her private capacity. Information provided by blog contributors are not intended to replace qualified medical or other professional advise and for diagnosis, treatment and medication you should consult a health practitioner.