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....

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. A major concern is 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. Some Councils are more humane than others and continue to include the family, but for others... and this seems to be a familiar complaint - if your loved one is in Care and you upset the care staff - or social workers -then the chances are they will stop you from visiting. I know one parent who was notified her son had split his head open and was rushed to hospital to have his wound stitched, a week after it happened. Staff didn’t notify her at the time of the emergency because they didn’t have to! Some parents have no contact or information regarding medication or any other health issues about their loved one's welfare, all under the guise of 'best interest'.

The misuse of the Mental Capacity Act has brought a huge increase in applications for Deprivation of Liberty safeguards through the courts. It's hard to believe that in 2017 this government are advocating locking up (and Sectioning) people with special needs in NHS Units and depriving them of family contact. These vulnerable people who are being unfairly punished because this government are unable to meet their care needs, would have had more freedom in the 70s living in large 'institutions' than they do in community care and independent 'of family' living' today...

This blog has given parents the opportunity to share the experience of their unforseen life with a special needs son/daughter. Some have had great support and professional guidance whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of the disability. Facts about their family life have been distorted and manipulated into many untruths, making parents only too aware that 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.
These stories are not only a means of support for parents but also a learning curve for our learning disability nurse following and other professionals.

Thanks for reading and please feel free to get in touch on the contact form below if you would like me to write your story or I can be of any help.

Take care


30 January 2013


Can't decide what to do with your book now that it's finished? 

Writing can be such a solitary journey and deciding how to go about publishing your book when it's finished can be mind-bending. Most writers will have heard of CreateSpace, but for those that haven't I wanted to share my experience with you.

My first book, Marie's Voice, was mainstream published 20 years ago, and when I finished writing my second book I wanted to have complete control over my work and (foolishly) published with Authorhouse. After throwing pot after pot of money at them I got wise and broke off my association with the company. 

I was on my own.

In the last year or so I heard so many authors speak favourably of publishing with CreateSpace that when my book With a Little Help From my Friends was finished I made my own enquiries and expected to fork out all kinds of money just like I had for Authorhouse. So imagine my surprise (and delight) when I learnt that CreateSpace publish books for FREE!! I couldn't believe it!

CreateSpace is a POD publishing company owned by Amazon. All advertising and promotion would be my responsibility and the printing, theirs. Unlike mainstream publishers, I would not be under contract and would retain the rights to my book. I won't waste time going into all the benefits as their website will explain far better than I can. CreateSpace 

My heart soon dropped when I checked out the CreateSpace site. Uploading a book in the correct format was far too complicated for my non-tech mind. I knew it had to be done properly. I don't know about you, but I find it so irritating when writers upload onto Kindle or other apps without taking the time to do correct conversion leaving broken sentences and chapters starting at the bottom of the page. It puts me right off. Where is the pride in their work?

Then a facebook friend gave me the details of a lady that formatted his book for CreateSpace, so I contacted MaryChris@TheBookTeam.com based in New Jersey, USA. After a few emails back and too, I sent MaryChris my word document and she converted my book for Kindle and also CreateSpace. Not only did she provide that service but she also uploaded the files for me, and at a very reasonable fee. 

What happened after file was uploaded? CreateSpace checked file for errors and then contacted me (within 24 hours) to either order a paperback proof copy of my book or have it sent through a PDF file. When I was satisfied with proof I went to my account and clicked on 'Approve' and my book was for sale on Amazon almost immediately.

My experience with CreateSpace has been very positive. The system is simple to navigate and book deliveries are reliable. When I found 6 six books (in a box of 40) with damaged spines, I informed CreateSpace and they immediately replaced the damaged goods, which I had not expected them to do.

I find a word-of-mouth recommendation far more helpful than having to browse the internet looking for - I don't know what? I've met some fab authors on Twitter @michelledalyliv and Facebook, which is why I wanted to share with you what friends have shared with me.

So go on, if you have an ebook and can't decide whether or not to publish a paperback, you could have it done while you're thinking about it. 


Delighted to announce I also published my books in hardback with Lulu (CreateSpace do not offer this service - yet!) I used my usual book formatter and all went without a hitch. The only snag was hardback failed to show up on Amazon, so after a month or two I contacted Lulu to ask why. Apparently, although publishing with Lulu is free, a Global Distribution package (£47 per book) has to be purchased in order for them to distribute book details to retailers. Once the Global Distribution package is purchased book details take about five weeks to reach Amazon and other outlets.

  My books are now available in paperback, Kindle and hardback. 

16 January 2013




"You will want her on your side and want to be on her side

Marie age 45

Ever since I can remember I have always fought for the underdog. People often say they wish they were as laid back as I am and I just smile. This attitude to life didn't come easy. Being a parent to a daughter with a severe learning disability, cerebral palsy and epilepsy, for over 40 years, has taught me to be patient. I learnt the hard way how not to get stressed over petty things and to save what energy I had to fight for changes on issues I not only couldn't but wouldn't accept. What I have always fought tooth and nail for however, is Marie's right to her individuality. She is a child in an adult body and although there has been very little intellectual development, I have worked hard and been consistant when responding to her challenging behaviour, enabling her to enjoy lots of social interaction (with either her support worker or family member) in the community.  
I've had to dig my heels in too to fight her ground for the right to choose her own activities and pastimes. She is a people watcher and does not react well as part of a group.  At 47 (going on 2) Marie treats her doll as her lifelong friend, for indeed she is. There are two other things that bring her great pleasure, her Duplo bricks, which is the only activity she is able to do alone, and her colouring books and pencils (even though she colours outside of the pictures) and whenever she goes to respite those three things go with her.

The doll's name is Cathy and my sister gave it to Marie when she was eight years-old. (To me) it's the baby Marie never had and probably reminds her of the first five years of her life when she lived in the nursery at Nazareth House childrens home, surrounded by babies, and where I first met her. When she wasn't locked in the pram store room alone, she would sit on her cot and watch the babies through the bars. And today, if she hears a baby cry it makes her cry too.
Marie was meant to be adopted when she was six weeks old, but because she was born premature in a mother and baby home, and stopped breathing at birth, the possibility of brain damage hung over her tiny head and in those days nobody adopted or even fostered a brain damaged child. 

This brings me to the reason I was prompted to write this post. A few years ago an American friend, after fostering a child for many years, was told by a social worker to take away the foster child's favourite cuddly teddy bear, which the child took everywhere, adding that it was not 'age appropriate'. I had never heard the term 'age appropriate' before and thought it must be an American policy, but I was annoyed that an official could make this kind of heartless stipulation. What about what the child wanted? Did her needs not count for anything? And what an awful position for my friend to be in.
 I'm sorry, but as a mother and protector of my daughter, if any official told me that Marie's activities were not age appropriate and to take them out of her life, I'd tell them to go to Hell.
It is so important for parents to speak out about policies they disagree with. Employees can't because they'd be looked upon as upstarts and probably be ostracised by their colleagues, and foster parents would run the risk of losing their foster child.

Not long after my friend shared that experience with me, I was working in a residential home for people with a learning disability. I often listened to one of the residents accurately reciting our birthdays as she sat in the lounge clutching her empty handbag. Then one day I spotted her reading the names on a birthday card and I was astounded.  My enthusiasm ran away with me, and I thought she might really enjoy visiting the children’s library. I never saw this particular lady with a book or magazine and offered to buy her some reading material. “What’s your favourite book?” I asked and her face immediately lit up and without a moment’s hesitation she said, “Goldilocks!”
“Okay!” I said. “I’ll...”
“I’m sorry,” the support worker beside me interrupted, “but you can’t bring that in for her because it’s not age appropriate.” 
Age appropriate? I’d like to know which bright spark invented that outrageous policy. Was it age appropriate to tell this resident when to go to bed and when to get up? Was it age appropriate to tell her when to have her meals and what to eat?  Was it age appropriate to tell her what she can and cannot read? Of course it wasn't. 
I visited another home where a young woman had recently been admitted with her collection of dolls. She was given a separate room to display them because collecting dolls at her age was not classed as age appropriate. At least this home, though not able to challenge the policy, had staff that were intelligent enough, confident enough, and caring enough to find a way around it. 
So imagine how flabbergasted I was recently to hear this latest trending government terminology describing my daughter as an 'Adult child'. I'm confused. Age appropriate? Adult child? Which is it to be?                                                                                          

Whilst I think the label 'Adult child' is a tad insulting, it does put things into perspective and clears up a lot of misconceptions about my daughter's level of understanding and acceptance of what she can and cannot do. It also takes pressure off care staff, allowing them to accept Marie for the child that she is and not be the adult her 47 years tells them she should be. 
I am sure if Marie could talk and was asked what mattered to her most, I reckon she would answer, "For the right to be me."