Wednesday, 4 January 2012

Why I Felt I HAD to Share Our Story

My book reviews have finally appeared on Amazon. I saw them 10 years ago when 'Bringing Up a Challenging Child at Home ' was first published, so no nasty surprises there! My book includes a brutally honest account of how I felt at the time of writing, and I spared no one! It was very cathartic but I'd be a little more circumspect if I were to rewrite it now....

When I first discovered that Chrissy had learning disabilities, I assumed the next step would be an appointment with a specialist who would tell us the exact nature of her problems – a diagnosis. I expected to be given some idea what ‘mental age’ she would reach, and what obstacles we might face in future. How wrong I was! I gradually realised that medical professionals had no more idea than I did about how to treat Chrissy’s condition.

During her childhood I felt isolated and terrified - traumatised even - by the violent self-injurious outbursts I was dealing with on a daily basis.

I believed that Chrissy’s problems were unique or at least very rare. Now I know that there are many other families like ours living with a cherished child, whose behaviour is a nightmare to cope with. Our love for our children remains undiminished when confronted with behaviour we find abhorrent but sometimes that love isn’t enough. Our home becomes a war zone and we can no longer function while living together as a family.

Divorce is all too common in families like ours and it's often the mother left to cope alone. Ensuing social factors, such as poverty, may contribute to the child's behavioural challenges and compound the parent’s feelings of isolation.

If took 15 years for family life to gain any semblance of normality and to find ways to cope with the challenges Chrissy presents. My search for answers planted the seeds for my book and a career in journalism. I had to tell Chrissy's story, and my research led to a fascination with complex and misunderstood medical conditions like hers. I've had a number of related health and human interest features published in magazines and newspapers.

I wrote my book in 1999 when the cause of Chrissy's problems was still unexplained. My target readers were other parents in similar situations and professionals working with families like ours. I longed to reach out to other mums like myself, which is why I get so much out of interacting with you all now, and I passionately believed that the professionals needed to know what it was like living on the front line. There was a big gap in the market for a book like mine as there were plenty of medical books about challenging behaviour in clinical settings but not in the family environment. Jessica Kingsley Publishers and BILD (The British Institute of Learning Disabilities) were both interested in publishing my book. I chose Jessica Kingsley because I thought it would help me reach a broader readership.

Writing Chrissy’s story helped me to make sense of our difficult journey and led to wonderful revelations. I realised how much I had learned about acceptance and unconditional love. I discovered personal strengths (and weaknesses!) I never knew I had. After spending years in the thick of it, by the turn of the century I had the space to appreciate Chrissy as she is – and marvel over her. She has a great sense of fun and makes us fall about with her quirky sayings and observations. She is generous with spontaneous smiles, affection and cuddles, and opens our minds by showing us a uniquely different view of the world.

When my book was published, I had stopped grieving for the ‘perfect’ child I thought I'd had and learned that life’s greatest gifts come in the cleverest disguises.

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  1. I think its great how you want to help and support others. I agree having children with additional needs do put a strain on marriages. I thought my marriage was rock solid till a few months ago. I think we get so caught up supporting our children we forget about our partners and in deed ourselves .

  2. True Wendy, sorry to hear your marriage is suffering. The stresses of bringing up a special needs chil d weren't the cause of my 1st marriage ending but add pressure to my 2nd marriage. It's a lot for a step-parent to take on!