This book has been written about our experiences raising our son Freddie who has Downs Syndrome. It will appeal to readers who are interested in challenging real life experiences or people who want to know more about Downs Syndrome and disability in children.
The story starts ten years ago when we were abruptly thrown off the comfortable well worn path of life; the day a doctor gently told us that our desperately ill newborn son probably had Downs Syndrome. Now that I’ve been off it, I fully appreciate the ease of following a well worn path, and equally, the difficulty of navigating an unfamiliar one. The book tracks our experiences as we are thrown dramatically into the unknown; recounting our heartbreaking lows and rewarding highs.
Life for people with Downs Syndrome has changed radically in the last four decades, but the extent of the change is poorly understood. Life expectancy has increased from only 12 years to 60. Attendance in mainstream schools has gone from close to zero to 80%. People with Downs Syndrome are suddenly visible in society.
Never the less, having a child with Downs Syndrome throws you into completely uncharted territory. Official systems intended to help border on the surreal; Lewis Carroll and Douglas Adams would have been hard pressed to make up some of the experiences we have had dealing with our local authority and the National Health Service. In addition to having Downs Syndrome Freddie had very poor health as a young child. Over the years he’s had 11 operations and spent a lot of time in hospital. The story is set against the background of an otherwise normal family living in the UK at the beginning of the 21st century and it’s about how we kept it normal. What happened to us could happen to anyone.
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