Tuesday, 18 November 2014

The Power of Words

Ten days ago I spent a day with other writers, most of them were Mums and all had their own story to  tell. I don't know when I write about my life with Chloe who will read my words or what reaction I will get. I have a hope that other parents of disabled children will see aspects of their own lives reflected in my words and it will stop them feeling so alone. Mostly though I write for me because it helps me cope with this alien situation I find myself in. Sometimes I just need to shout, laugh, cry or celebrate and I don't want to do it alone.

When I look back I realise I have always written and words have always been important to me. When I was at primary school I wrote a poem about having an operation that was chosen to be in an anthology. As a misunderstood and rather angry twelve year old I wrote an account of why I was afraid of hospitals which my class teacher read out. It could have been a mortifying experience but my words healed a rift that was there between me and my peers and enabled me to let down my guard and make friends. Unfortunately and rather predictably as an angst ridden teenager I wrote hundreds of dreadful, self indulgent poems that were not fit for anything but a bonfire but made me feel better. Most of my family members and some of my very special friends have copies of carefully crafted poems I have written for important moments in their lives. I think they treasure my words but you can never be sure.

The one thing you get practised at as a parent of a disabled child is writing about your child's particular needs. To access funding and support you have to fill in long, complicated forms. Every word you write in the early days is like a stab in the heart. Telling faceless decision makers exactly what is wrong with your precious child and why you need help is heartbreaking. You can't downplay anything because then you won't get the financial and practical support but to put everything your child can't do on paper is excruciating. Every parent needs a place where they can celebrate their child and all these forms do is increase the fear you have for your baby's future.

I have used my words for six years to influence the outcomes for my daughter. I have written parent views for Chloe's statement of special educational needs, the legal document which ensures she gets the right level of support in school. There have been letters and emails to my MP asking him to make enquiries on our behalf when I have felt powerless to do anything myself. Recently there was the the robust document to Devon County Council which has resulted in them taking action to address their failure to fulfil statutory duty for deafblind people. The right words can initiate change and bring communities together.

We all have a need to express ourselves and be heard. For the first fifteen months of Chloe's life she couldn't hear anything, but through touch she knew she was loved and safe. I was so afraid for her future and could not imagine how she was going to communicate with such a profound hearing and vision loss. Six years later she is becoming proficient at reading and writing Braille and her spoken language is extraordinary. Cochlear Implants have given her access to sound and from the moment of switch on she was eager to express herself. The ability to communicate and be understood is so precious. My daughter's first words were just for me. I was changing her one day, giving her a gentle massage and singing when she looked up and said, "Mama". That moment will stay with me forever.

Chloe's first day at nursery school

1 comment:

  1. Your words are making a big difference and creating real change. The power of blogging and the words of impassioned mothers everywhere cannot be underestimated. Keep going. Hayley