Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs.
Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. This blog has given parents the opportunity to share their individual experience of their unplanned life with a vulnerable adult/child.

Some parents have had great support with wonderful professional guidance, whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of their disability. Facts about their family life have been distorted and manipulated into many untruths, making parents aware their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling their story in Warrior Mums puts their truth 'out there' for all to see.

A major concern is that when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. If your loved one is in the care of the state and you upset the care staff or social workers then the chances are they will stop you from visiting or from having any contact. Information regarding medication or any other health issues about your loved one's welfare is withheld, all under the guise of your loved one's 'best interest', pulling out the Court of Protection/Mental Capacity Act gagging cards. The cruel message to parents is clear - - toe the line, stop asking questions and taking too much interest or lose contact with your child.

It's hard to believe this government are locking up people with special needs, people who would have had more freedom in the 70s living in big 'institutions' than they do in 'independent living' today...

We have to do something to stop this abuse of power. We have to do something today...

Michelle Daly


19 November 2011

Michelle Daly's - My Recipe for Writing







When some people hear you've had a book published what's the first thing they ask you? 
You guessed right. 'How long did it take you to write it.' 
I think that's because everybody has a book in them and loads of people want to write one, but they want to start it tomorrow and finish it yesterday. I was hardly 'writer' material. On the day I left school my Headmaster handed me a reference on which he'd written, 'Michelle thinks life is one big joke!' Well, you can't really argue with that when you're fifteen, can you?

My first book, Marie's Voice, began as a rant on my Brother typewriter in the 80’s. More than a decade earlier, at the age of sixteen, I had been working in a children's home (Nazareth House) where I met a little girl named Marie. (Pronounced Mar-ree). She couldn’t walk and dragged her feet along the polished floors, infuriating the nuns who would then banish her to the pram storeroom. Marie would be placed on the floor in the middle of the room and the door would close on her, leaving her alone for hours. She screamed and screeched until she knocked herself unconscious, and was only brought out at mealtimes, when she was fed on baby cereal.

Being third eldest of seven children, it was hard for me to imagine not being wanted by anybody. I immediately bonded with this little girl, and when the home closed down six months later, I followed her to a hospital in Taunton for the mentally handicapped, where she was given a bed, and I was offered a job.

Me (16 on the right) at my sister Cathy's in 1970 after the convent closed down and just before I went to Sandhill Park Hospital in Taunton.


Working in the hospital was like stepping into another world; a world where human beings with over-whelming qualities were classed as sub-normal. Looking at the same view from the ward window year in and year out, the only stimulation being the clatter of the food trolley that called to the wards three times a day, but in those days fostering or adoption was not an option for a disabled child, and it seemed that once they entered the hospital, they never left it. 

After a few months I decided I had to get out of there. I also decided to get Marie out of there too. I traced Marie's mother, who very selflessly signed legal guardianship papers, enabling me to bring Marie home to live with me. By that time I was nineteen and Marie was eight. From then on Marie looked upon me as her mother, and I looked upon her as my daughter.

First few months at home getting to grips with a pencil

I loved being Marie's Mum but I could not believe the way parents were treated by so called professionals. I learned early on that we should be seen and not heard, that parents of disabled children were not encouraged to have ideas with regard to behaviour management or basic care, we were just expected to keep our son/daughter clean and well fed and leave the observations to the experts.
At school Marie threw her food on the floor and caused such a scene that the teachers felt they had to feed her. I asked them not to because Marie was able to feed herself at home, and I knew that if they didn't give in to her anti-social behaviour, that she would give up and feed herself. I was met with raised eyebrows. What did I know?
I asked if I could send a diary into school (long before diaries became the norm) to enable the school and I to document Marie's 'difficult' behaviour and work closely together, but I soon learned that what went on in school was none of my business.

The years passed by and conflicts with officials became a way of life. It was only after a very upsetting dispute about my parenting skills, and my refusal to be dictated to, that I'd had enough and knew I had to tell our story.


By this time I was married and had two children under three; Marie was nineteen. My days were already full, but I think it's true, that if we want to do something badly enough we will find a way. I did.
It was just after Christmas, which is my favourite time of the year, when everything stops for the holiday and I go into my thinking mode, that I decided to write a book. So I set up my own little corner in the bedroom and bought a wall paper pasting table, a dictionary, a thesaurus and some foolscap paper, so I could make a copy!

I'd documented most of my experiences, from bringing a child out of a hospital for the mentally handicapped in the 70's, to trying to adjust to life in the community. Fortunately, I am a hoarder, and had kept every piece of correspondence relating to Marie and my struggle with 'officials' Even the envelopes came in handy when enclosed letters were not dated, at least I had the postmark. I bought loads of diaries, one for each year, filling in the dates and ignoring the days, otherwise it wouldn't have worked. Then, I filled in the relevant correspondence from over the years. This gave me a really good head start, enabling me to fill in the gaps and make sense of things.

Every night when the children were in bed I'd be tap tap tapping away. I turned the pages into chapters and spread the chapters across my pasting table, and soon a book began to form.


Michelle Daly photo of Marie and Patrick
Patrick having a cuddle on 18 year-old Marie's knee before bedtime.

Today, I say I wrote myself out of a nervous breakdown.
I had been so beaten down by the system. I thought I was a crap mother and was led to believe all the snide and slanderous remarks made against me by people who should have known better.

I finished the book almost a year later. I then decided to find an agent, but gave up after a while and sent it directly to publishers. When Virago sent me a rejection letter, they apologised for keeping my manuscript for so long, saying that all of their staff had wanted to read it, and had loved it. They also said their publishing house was too small for my book, and it would simply 'get lost' with them. So I decided to put my manuscript away in the drawer. There was no rush to have it published. I've never been very ambitious, I was just so happy that I'd written it.

Anna, Marie and Patrick

 It wasn't until I moved to Ireland in 1990 that I dusted my manuscript down, bought myself a word processor, and more or less re-wrote my book. So much had happened since the first draft I now needed to update it and bring some closure. 

I completed the book mid December that same year, and with a great deal of excitement, the children and I went into town on Christmas Eve to send it off to a Dublin publisher. 

For those who are curious, it took 10 long months before the publisher rang me with the news that they were going to publish my story, and six months later it was published.

I remember so clearly that spring day my book was due to arrive. There was a postal strike in Ireland, and the publisher had sent me a special delivery by rail. I was sitting on a bench with my children in the railway station in Co Mayo, smiling when I heard the train in the distance, knowing it had my freshly printed book on board. What a feeling when I opened the box on the platform to see my daughter smiling at me from the cover! At last my dream had come true.

So when people ask, 'How long does it take to write a book?' It's a question I can't really answer. Do we count the years in between?

Of course, anybody can write a book and we each have our own recipes. The ingredients for my first book was passion, determination, the desire to put many wrongs right, and staying power.
Which brings me to the other common question: Where do I get my inspiration? Mainly from watching how we all treat each other.

Why I decided to write I Love Charlotte Bronté 

When I returned to England from Ireland I did agency work. People used to ask me why I'd never trained to be a nurse but the truth is the more you 'train' the further removed you are from the patients. I like to work on the floor with a hands-on approach to all the residents, not stuck in an office with paperwork. This kind of work can be very sad and yet most of the staff I worked with just rolled up their sleeves and got on with it. I felt proud to work alongside them and decided to write a book about an underpaid, undervalued, dedicated careworker. 
I worked nights and whenever I had a break I would sit at the radiotor by the window with my pencil and notebook and scribble away.

I grew up in Liverpool where my grandparents had settled when they came over from Ireland. When I chose to go and live in Ireland - because of my ‘Irishness’ - I was in for a shock. I soon realized how little I knew about Irish culture and history.
I had a wonderful time living amongst the Irish and felt compelled to write a novel celebrating the Liverpool/Irish connection. It was also an opportunity to leave something for my children and grandchildren to read after I had gone to the skies above.

And finally, I am a great admirer of Charlotte Bronté. Charlotte is almost as famous for her short tragic life as she is for her career. If we look to the beginning of her publishing career Charlotte and her two sisters, Emily and Anne, published a book of poetry under the pseudonyms of Ellis, Acton and Currer Bell, expecting their work to be taken more seriously if submitted as men. The book, which cost £37 to publish was almost a year’s wages in those days but sold only two copies. Did she/they give up? Fortunately for millions of readers she went on to her next project with unblinkered determination. It’s difficult not to admire someone who overcame so many difficulties and achieved so much; someone who gave us one of the greatest novels ever written. And above all someone who never ever gave up...However, everything I read about Charlotte was written by academics. I decided to write about this great author through the eyes of a working class woman and because Charlotte was half Irish everything just fell into place. So they were my main reasons...


Where there’s a will....

Being a carer can be very isolating but I’m quite a strong person, and a dangerous optimist, and I try to make the most of each day. When I decided on the title and wrote it down I couldn’t wait to get started; the story was just waiting to be told. I had a strict writing schedule. Marie and I would usually go up to the attic (office) after breakfast and I would work for most of the day. Her limited understanding can often present challenging behaviour but it was as if she sensed how important the project was to me. She would sit beside my desk scribbling away in her exercise book or playing with her blocks. I’d glance at her occasionally and feel so humbled it would make me all the more determined to stick with it. In my mind we wrote the book together because if she hadn’t been so compliant I couldn’t have written it.

I was far more confident and familiar with the publishing world when I wrote ILCB. I knew exactly what I wanted even down to the cover. But it was also a different publishing world. The market was saturated with writers. Nowadays so many people work from home and there are more opportunities to work on that novel. Publishers no longer had in-house readers and were far more unreachable. I remember listening to an author being interviewed on the radio. She was saying how thrilled she was with her agent, how he guided her with the storyline and book development. She said her name began with V or something but they’d suggested she change it to something beginning with C so she’d be next to Jackie Collins on the bookshelves..
I would never have agreed to that.

I realised the only way I’d have full control over my work would be to publish it myself. I had to work twice as hard because I didn’t have a team of professionals behind me but I’m glad I went down that route. There used to be a lot of snobbery towards self publishing but it’s becoming more acceptable as writers are taking control over their own work.

My office was a peaceful place to write. I didn’t answer the door or phone and I didn’t do much reading because when I wasn’t writing on my computer I was often writing in my head. Although I have to admit there were days when I dragged myself (and poor Marie) up to the attic whilst thinking of a million excuses not to write that day, sometimes writing is a labour of love and you just have to get on and do it. Besides, the characters are so alive they’re like friends. Some days I tell them what to do and other days I’m astounded at their unpredictability and the fun I have with them. I also have to think about Marie’s future and that’s a great motivator. So my reasons for writing are what drive me when times get tough.

When I Love Charlotte Bronté was published one of my proudest moments was visiting Haworth and seeing it on the shelf in the Bronte Parsonage Museum Bookshop. You should have seen the smile on my face.

I often wish I'd had a better education so I could be a better writer but then I wouldn't have met such incredible people and had these stories to tell and I wouldn't be me. I have learned to 'own' my writing. It's the only voice I have and I hope I speak up for and reach out to the people I care about the most.


Marie's Voice has been updated and published under the title of With a Little Help from my Friends...





 



16 comments:

  1. What a moving and inspiring story! It just goes to show that determination can go a long way. I'm looking forward to reading about your journey with Marie.

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  2. Very interestig and heart-warming, Michelle. I wish you well with your next book. Also, I coach writers and if I can ever do anything to help you, just let me know.

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  3. Keep posting your link to your blog. And add interesting things about your writing life. I write too.

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  4. I love this. True writers write from the heart.

    Peace,
    Annie at Annienygma.com

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  5. Love *your* story and how you typed your way into happiness. Wonderful post!

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  6. Anonymous07:56

    I loved hearing your story. It has given me a lot of inspiration.

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  7. A very inspiring piece! Thanks for sharing :) The question of 'how long does it take to write a book' is on a par with 'how long is a piece of string', isn't it?! It's such a personal journey and everyone goes about the whole process in their own way.

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  8. Thank you for this heartfelt, beautiful and inspiring post ... I will definitely be looking out for your books!

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  9. Anonymous03:45

    What a great and inspiring story. I will also be on the lookout for your books. Thanks for Tweeting me your link! Looking forward to reading more. Have a great day!

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  10. Susan, thank you so much for your comments. Sorry I've taken so long to respond but I've only just learnt how to post a reply.:)

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  11. Joyce, thank you! I just might take you up on that offer.

    RD, many thanks for the advice and encouragement. It all helps...

    Annie Re: 'True writers write from the heart', that is so true. When I feel passionate about something and I sit down to write, then there is no stopping me.

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  12. Lynne, I'm so glad you enjoyed the post. I think it's always good to share the good times as well as the bad ones.

    Christy, many thanks for stopping by. I've met a few new people through this post and have tried to make contact through your blogs but as I said earlier, I was unable to post the comments. Now that I've managed to master the tasks you'll be seeing more of me. :)

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  13. Clare, and thank you for stopping by! We do indeed travel on different journeys when we set out to write. That's why it's great that we're all in touch and share our experiences with one another.

    Val, thank you for the kind words. When people read, 'I Love Charlotte Bronté' they often describe it as a feel-good book. I like to help make people smile.

    Aspieside.com, I'm so pleased that you enjoyed our story. My book about life with Marie and all the great doctors and nurses who helped us, will probably be out in the Spring.

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  14. Hi Michelle.

    Thanks for sharing, that was a lovely post. I loved the image of you receivng your printed book from a train :)Do you still visit Ireland? I live in Cork myself

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  15. Hi Emma.
    So happy you enjoyed the post. That day on the platform will be in my memory forever.:) I don't go to Ireland as often as I'd like to. Marie is now 46 and does not adjust to change very well but I have such wonderful memories of my time there. That's why I wrote, 'I Love Charlotte Bronté' although it's fiction, I can put a few faces to some of the characters and have to pinch myself now and again so as not to live in the past.
    Cork and Donegal are places I intend to visit before I die.:)

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