Open Letter to Parents or Carers of a Child with Special Needs

19th February 2006

Dear Parent or Carer of a Child with Special Needs

My apologies for the impersonal start to this letter however as I am hoping to get as wide a circulation as possible I cannot make it any more personal.

My name is Silvia, and Max, our eldest son has special needs. In our three years coming to terms with having a child with special needs (and all the other traumas we have been through) I have often searched for books and information on many aspects of our new life and have found that the greatest wealth of information comes from the USA. Although invaluable in its own way, I believe that there is a shortage of books written in the UK about life with a child with Special Needs here.

Some time ago I purchased a book called “From the Heart: On Being the Mother of a Child with Special Needs” and last Christmas I bought my husband “Uncommon Fathers: Reflections on Raising a Child with a Disability”. Both these books are fabulous and are a collection of writings by ordinary mothers and fathers about a variety of aspects of their life with a child with special needs. Some parents write of the practical aspects of adapting to their new life, some write of the heartache of making difficult decisions relating to their child, some just write about what they think is the most important aspect of their new life which is worth sharing.

I would like to see if it was possible to collate enough British stories to create a similar book and wondered if you were interested in contributing in any way. If possible I would actually like to produce two books (why stop at one?!): one focusing on all aspects of the bureaucratic difficulties of getting the support and assistance we need, eg. getting enough respite; getting the right equipment; the right benefits; working your way around DLA Carer’s Allowance; sorting out direct payments etc and the other more from the heart, more a British version of the American books I mention above. Of course this requires enough contributions from willing parents, so at the moment I would just like to focus on getting people interested in the concept and making a list of potential authors.

As yet I have gone no further in this idea than forming it and this attempt at contacting parents willing to contribute. If there is anyone willing either to write something or to assist in finding a publisher, promoting or selling the book, should we ever make it, I would be most grateful for your support.

I envisage that should the book ever make it to print we donate a percentage of the proceeds to a small selection of children’s charities amongst which I propose Chase (Children’s Hospice Association South East) and The Children’s Trust. I would be happy to consider any other suggestions.

If you could help in any way please contact me in any of the following ways: telephone: 020 8767 5025 (there is an ansaphone if I’m not in); email: silvia@hopemason.net; snail mail: Silvia Hope-Mason, c/o Lockwood Press Ltd, 1 Nine Elms Lane, London SW8 5NN.

Thank you for taking the time to read this letter. All help and support would be gratefully received. Please photocopy this and pass it on to anyone you think may be interested.

You can download a copy of this letter here.