Book: Down Syndrome - An introduction for carers and carers

Cover image: Down Syndrome: An Introduction for Parents and Carers

Cover image

I was asked to review the third edition of Down Syndrome – An Introduction for Parents and Carers by the publishers, Souvenir Press, in December 2008. Not something I have previously been approached to do but I’m happy to give it a go.

Written by Cliff Cunningham, Visiting Professor of Applied Psychology at Liverpool’s John Moore’s University, the first edition was published in 1982. A second edition followed in 1988. So a third edition is certainly due as, in 20 years, much progress has been made in the understanding of Down Syndrome as well as in society’s attitude to disability. I have not read either of the previous editions but can say with some certainty that I wish I had owned a book like this in the early months of my son’s life when we were full of trepidation for the future and not entirely sure how to go about getting our questions answered or where we might find the reassurance we sought.

The book is broken down into four sections:

Section one: Becoming a family of a Child with Down Syndrome

1. Will we cope? What can we expect and how do we tell people?
2. Coming to trms with the diagnosis – feelings, reactions and adapting
3. What is the effect on the family?

Section two: Causes, Risks and Prevalence of Down Syndrome

4. What causes Down syndrome?
5. Risks and prevelance of Down syndrome
6. Prenatal diagnosis: tests for Down syndrome during pregnancy

Section three: Charcteristics of Down Syndrome

7. Physical characteristics of Down Syndrome
8. Personality and socialisation
9. Behaviour and psychological problems
10. Intelligence, development and attainments

Section Four: Practial Aspects and Future Directions

11. Treatments, early interventions, teaching and learning
12. Working with professionals and local services
13. Inclusion, integration and chosing schools

If you are new to the world of parenting or caring for a child with Down Syndrome I can see that there is much practical benefit to be had from this book. But as I am now the parent of a nine year old child (at the time of writing) with Down Syndrome it is somewhat diffcult to look back on those early days and remember exactly how it felt.

However, reading through the first two sections of this book did bring back many memories and there is much comfort and reassurance to be had within the pages of this book. I especially like the use of quotes from other parents and these are
sprinkled through the book – many of which reflect my own sentiments. There is nothing quite so reassuring, in my opinion, as learning what others before you have gone through – and realising that we are not alone in this journey.

The third and fourth sections covers aspects of Down Syndrome where, over the years, we have had to gain the knowledge and skills to deal with (thus far at least) from varous other sources. These include other parents and carers (hence my desire to set
up this website), healthcare professionals and the various sevices availble to us. But these chapters are, for me, the most difficult to view disspassionately.

To discuss aspects of behaviour, ability, physical characteristics and so on is to be forced to confront things we strive to (almost) put aside on a day-to-day basis when simply enjoying “the moment” of being with our children. But often these things do rudely interupt us to remind us that our children will present different challenges to other so-called “normal” children. My wife and I  try to treat our son as “normally” as we can but these chapters do help to explain why this approach does not always run smoothly.

Talk of treatments, interventions, integration, etc. in the final chapters only served to remind that our children are all individuals and that we need to work a lot of this stuff out for ourselves – especially with regards to schooling I would suggest. Still, I am happy to have a copy of this book and to know that I can dip into whenever I feel the need.

If I have one criticism it is that some of the pictures in the book look very dated (even if they are not – perhaps the black and white reproduction has not helped) and, for me at least, run visually counter to what the book seemed to by striving for – a more positive view of our children, However, I was very pleased to see the inclusion of photos from Richard and Fiona Baily’s project ’365′ – 365 photos of children with Down syndrome taken in 2005 (my son was one of the subjects) – visit www.ds2008.co.uk.

I recommend parents and careers to get a copy – as the well worn phrase goes “it does what it says on the tin”.

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