BOOK REVIEW: KARINA HAS DOWN SYNDROME

Reviewed by Ray Power Walsh, Killiney - the mother of a son with Down Syndrome

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This book is one family’s account of the early years with a child who has special needs. It is intended as a resource books for the families of children with Down Syndrome, teachers and disability service workers.

Karina was born in August 1990 in Western Australia. She is the second daughter of Dun Dolva and Rodney Potter. Her parents were initially shocked to learn that Karina had Down Syndrome, but with the help of the available services and programmes they now have high hopes for a very bright future for their child. Sadly, this book could not be recommended to Irish parents. There is a real danger that if Irish parents of a newly-born baby with Down Syndrome were to read the book they would be setting themselves up for bitter disappointment when they encounter the services, or lack of services, in our country.

The services available to the Australian family, as described in this short and readable book, are spectacular. In her early intervention programme Karina is regularly assessed and provided with specialists in the care areas, as they needs them. She is visited in her home by a physiotherapist once a week. She is also provided with occupational and speech therapy as often as required. When her baby brother was born, her parents were able to avail of a home help, crisis care and psychological services to support them at that crucial stage.

There is no fight to get these services—their social trainer informed them of everything available, actually encouraged them to use the services, and organised everything for them.

When Gun and Rodney needed a break, they were provided with a home-care and sitter service, while they stayed at a Carers’ Retreat in South Perth! As Karina grew older, respite services became even more accessible to them. When Karina reached school age, her parents chose integrated education for her; she was provided with a teacher’s aide for one-to-one teaching daily.

The book ends on Karina’s sixth birthday. An after-note informs the reader that in 1998, Karina has been diagnosed with a further condition—Attention Deficit Hyperactivity Disorder (ADHD). Despite this setback, the wonderful services continue to support the family, helping to ensure a positive outcome.

It is shameful that in Ireland our government is failing to address the needs of the most vulnerable members of our society. This book should be prescribed reading for the members of our government, policy-makers and service-providers. It is tragic that the real disability which our children endure is not the one they are born with, but the lack of provision of adequate services to protect their human rights. Can a society which is guilty of such lack of café expect to call itself a modern society? Will we always have to lobby on behalf of our children, or should be start saving for a ticket to Australia and present ourselves as political refugees?

KARINA HAS DOWN SYNDROME, by Cheryl Rogers and Gun Dolva. Jessica Kingsley Publishers, London (1999) ISBN 1 85302 820 7. Paperback, stg£9.95. (www.jkp.com)