Product Info

Coping with Down's Syndrome
By Fiona Marshall - a Sheldon Press book

In the last few decades life for children with Down's syndrome has changed for the better. Where once they were marginalized, they are now seen as individuals and are integrated into society. There is a growing realization that Down's children have enormous potential, and their future is brighter than ever before.

Fiona Marshall explains Down's syndrome, its causes, and how it is diagnosed. Here you will find sound, common-sense information on the health issues that your child may face and what to expect as they develop and grow. Included are case studies showing how other children and parents have coped, and lists of organizations that can provide resources, help and support.

ContentsContents

• Acknowledgements
• Introduction

• Welcoming your baby
• About Down's syndrome
• Some history
• Causes and types of Down's syndrome
• Diagnosis — antenatal tests
• Health issues
• Settling down with your new baby
• What to expect as your child grows up
• Daily life with your child
• Other issues
• Some final thoughts

• Further reading
• Useful addresses
• Index

Extra Info

I look forward to the day when a mongolian idiot, treated biochemically, becomes a successful geneticist.' This quote is from the French doctor Jérôme Lejeune, deploring the practice of aborting babies with Down's syndrome. His words go to the heart of many issues surrounding those with Down's syndrome, in particular, their dignity within society.

Perceptions of Down's syndrome are changing. Just 100 years ago, babies with Down's syndrome were routinely institutionalized. Some 50 years ago, parents might still have been encouraged to have an 'afflicted' baby 'put away'. Some readers of this book may be among those who remember shameful playground taunts of 'Mongol, Mongol!' to an unpopular child. Even ten years ago, the future for a child with Down's syndrome was not as bright as it is today.

In the past few years, much has changed. It is not merely that 'mongolism' is out (as outdated as 'idiot', used as a medical term in Victorian times), institutions are definitely out or that old-fashioned shame and dismay around Down's syndrome are going out. Today, there is a growing realization of the potential for children with Down's syndrome — so much so that at times it seems like an entirely different condition to that described just a few years ago.

For a start, modem medicine can do so much more for children with Down's syndrome that their quality of life, as well as life expectation, is vastly improved. Much suffering is avoided. While, sadly, some children do go through wretched periods of ill health and may remain fragile, many families are also free to develop the potential of their children at a much earlier age than was possible previously.

There is greater emphasis on early intervention — working with children at an early age to develop their capabilities — and on inclusion, ensuring that children attend mainstream school and keep up with their peers right into secondary school and beyond. Motor, cognitive and social development are all areas of breakthrough for children with Down's syndrome. We are still discovering how much they can do and all that they can be.

Above all, there is growing acceptance of children with Down's syndrome as children. Children with a variety of temperaments, interests and abilities, children who play, squabble with siblings, do schoolwork, swim, misbehave, go on holiday, attend groups, clubs and so on. The birth of a baby with Down's syndrome is, first and foremost, a new baby to welcome, a new life to celebrate.

Ignorance and negativity do still exist. The doctor who breaks the news with bleak warnings about the child's likely future, the relative full of patronizing myths such as 'At least he'll always be loving and good', the friend who arrives at the new mother's bedside with eyes full of tears and sympathy.

In the age of the designer baby, in a competitive, results-orientated culture, a child with Down's syndrome is still an embarrassment to some, hard to colonize in contemporary society. However, any baby is an embarrassment to a former lifestyle, any baby upsets expectations, changes values, stretches ideas of love, sometimes to the limit, maybe tramples over career prospects and personal comfort. The reality of any baby (as opposed to the fantasy baby that may be carried during a pregnancy) can be lovely, lonely, difficult. It's just that a baby with Down's syndrome presents a reality for which new parents are even less prepared than the reality of a new baby without Down's syndrome.

When you first learn that your baby has Down's syndrome, you may feel overwhelmed by a variety of emotions. Shock, anger, fear and acute loneliness are natural. You may have outdated ideas of what Down's syndrome is floating round in your mind, you may wonder how you are going to cope or how others will react; almost certainly there will be a period of grieving for the baby you did not have. It's a time of special vulnerability for new parents. Even if you were prepared for your baby by antenatal tests, there will still be a period of readjustment.

Information and sharing with other parents can be paths through this difficult period — when you are ready. It may take days, weeks or months before you feel able to start taking in the facts. In time, however, finding out about Down's syndrome and learning how other families have managed can be extremely helpful, lessening feelings of isolation and giving hope in an unfamiliar, new life where all the landmarks have to be learned afresh.

It is hoped that this book, which sets out to present an updated view of Down's syndrome, will help to give you that information. There are many other excellent resources for families with a child who has Down's syndrome and these are given at the end of the book in the Further reading and Useful addresses sections. This book is a starting point, but it is also very worthwhile contacting the Down's Syndrome Association — a most helpful organization with comprehensive literature and access to different sources of support.

The work and ethos of such organizations are part of a modem approach to Down's syndrome, representing an ideal that is becoming reality against the social odds. In the words of the world famous expert on Down's syndrome, Dr Siegfried Pueschel, 'When accorded their rights and treated with dignity, people with Down's syndrome will, in turn, provide society with a most valuable humanizing influence.'

About the author
Fiona Marshall has written widely on health, psychology and parenting. She is the author of several Sheldon Press books, including Living with Autism and Your Man's Health, and also a novel.