Wednesday, May 28, 2008

Wyn and Joe's special needs

Blue Sky July, a collection of intimate and heart felt diary-type musings by Nia Wyn mostly concerning her severely disabled child Joe, has been short-listed for the Wales Book of the Year. The book, first published in 2007 by Seren, has already won critical acclaim, and is due for a hard back launch in the US later this year. However, Peter Limbrick, who runs an organisation called Interconnections for those supporting children with special needs, believes the book should come with a ‘health warning’.

The book begins in the summer of 1998, when Joe is born, and finishes in 2007. On the day of the birth Wyn writes: ‘If I could keep one feeling, from the whole of my life, I’d choose this one. This time, when just to be human feels divine, and nothing is wrong.’ Within hours of the birth, though, something goes wrong, and her son is transferred to intensive care. Wyn then notes: ‘It’s the strangest time – a birth – for life to start falling apart. Just like that!’ Subsequently, Joe is diagnosed with cerebral palsy. Blue Sky July describes how Wyn battles against impossible odds to heal her son, Seren says, and also explores the impact of the tragedy on her life.

Although first published by Seren, which describes itself as Wales’ leading literary publisher, Blue Sky July has been re-issued by Penguin under the Michael Joseph imprint in the UK, and is about to receive a hard back launch in the US under the Dutton Books imprint (as Blue Sky July: A Mother's Story of Hope and Healing). It has also been serialised on BBC Radio Four in the UK, and been featured in several UK newspapers. Now, though, this ‘runaway success’ (Seren’s words) is continuing with a short-list nomination for the £10,000 Wales Book of the Year prize. Other nominees include the poet Dannie Abse (who, many years ago, was my father’s best friend!) writing about his late wife, and Tom Bullough with a novel about childhood friendship. The winner will be announced on 1 July.

There are long extracts from Blue Sky Blue on The Guardian website, and the full text of the first three chapters is available on the BBC Five website.

But not everyone is a fan of the book, especially Peter Limbrick, who set up Interconnections in 1995 to support all those ‘who work with babies, children and young people who have ongoing special needs for whatever reasons’. In an article available on the Interconnections website, he says: ‘[This] is not a book that I would recommend to parents of children with disabilities and special needs and I would want to issue a very serious ‘health warning’ for those parents who do get hold of it.’

Limbrick lists all the many many ‘interventions’ Wyn tries for her son (a few of which include sensory rooms, muscle tapping, music therapy, a ‘second skin’, botox, and faith healing), but says the prevailing image is of ‘a circus’ - one with cash tills. There is talk of miracles in the book, he adds, but ‘the miracle might be that Joe survived the circus, unlike his parents’ relationship or his mother’s career’. ‘We have entered the 21st century’, he warns, ‘without a science of early intervention for children . . . to help families like Joe’s. Hence the clowns, the snake oil and the cash tills.’

The book is beautifully written, he admits, and nothing can detract from Wyn’s love, commitment, enterprise and energy. But his health warning comes for two reasons: ‘The book reinforces the message that parents should sacrifice all to offer their infant every treatment and therapy available (without guidance about what is worth having and what is not); and it challenges every parent (usually the mother) to strive every minute of the day and every day of the year to produce a cure for the child’s disabilities.’

No comments: