Kenny/Naughton School, Co Mayo, Ireland

Kenny/Naughton School, Co Mayo, Ireland
RIP to my dear friend Erna Naughton who passed away in the Isle of Man yesterday 29/8/2014. Photo taken at Kenny/Naughton School, Co Mayo, Ireland

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Thursday

Introduction to Warrior Mums



My life has been easy in comparison to the lives of these incredible women. I never had the heartache or the feelings of guilt that a mother often feels after giving birth to a sick or disabled child. You see I met my daughter when I was 16 and she was 5. The only disabled child in Nazareth House Children’s Home where I was working as a housemother, she had been locked in the pram store room all day - every day - alone. Her cerebral palsy meant she could not walk and would drag her feet along the nuns polished floors leaving marks in her trail (and they couldn’t have that!) and her severe learning disability meant her only stimulation was to scream and screech for hours on end and crash her head into the floor, leaving a permanent sore from where blood constantly trickled down her forehead. When the home closed down later that year Marie was sent to live in a big hospital where I was also offered a job as a cadet nurse. Though most of the staff were kind, I felt a hospital was no place to bring up a young child, so I left my job and contacted Marie’s mother who then made me Marie’s legal guardian, which at the age of nineteen, gave me the power to bring her home to live with me.

Marie’s early years left her with many fears and behaviour problems and one of her biggest fears was being left alone. It had taken many months and a lot of hard work to get her to finally sleep in her own room.

Like so many marriages, my first marriage broke down after only a few years and Marie and I went to live with my parents in Liverpool. We had single beds in my old bedroom and 13 year-old Marie was in 7th heaven being able to share with me. Some mornings my mother woke us with a tray of tea and toast and I’d squeeze Marie into bed with me while she ate her toast, passing her drink now and again then resting it back on the tray. I think we were quite spoilt!

The problem started when we began to live on our own again. Despite having a lovely two bed-roomed house and days full of fun and laughter, within half an hour of Marie going to bed in her own new bedroom she reverted to her old ways and the screeching began. She would scream and screech for hours and I mean hours. All the continuity with her bedtime routine had been wiped out. Sometimes there’d be a short lull and all would be quiet. I would creep up the stairs and open her door very quietly just to make sure she hadn’t hurt herself. She would be sitting on the floor looking up at me, pulled hair in disarray, mattress half off her bed, curtains pulled down off the windows, tutting at me as if someone else had done it. 

Today I wonder why I didn’t allow her to familiarise herself with the change. She could have continued to share a room with me and slowly been introduced to her own room, but I guess none of us are perfect and I made a big mistake expecting her to adjust to being alone again when she hated it so much.



I can’t remember how long it went on for, but I realised it was too long after my next door neighbour knocked on the wall calling for me to ‘shut her up’. On a scale of 1-10, the psychological effect of Marie’s screams on me was a 2 – the neighbour banging on the wall was a 20. Our neighbour was actually very nice and apologised to me the next day, explaining she arrived home after a stressful day at work and snapped when she heard Marie screeching (again).

Over the weeks my nerves became jarred. My neighbour only banged on the wall that once, but once was enough to make me aware her peace was being shattered every night when the screeching began. I didn’t know where to turn. 

Night after night I sat for hours listening to the screams, expecting the neighbour to knock at any time. I was twenty-five and trying to cope with a broken marriage and being alone again. I lost so much weight I was down to eight-and-a-half stone. Marie was trying to cope with the change too. I didn’t know what to do anymore.
In desperation, I wrote to a consultant psychiatrist who specialised in learning disability and whom we had seen two or three times a year before we moved back with my parents. She was fantastic and so hands-on with the parents that I had her home phone number in case problems arose in between appointments. In my letter I asked the consultant if Marie and I could go and see her. However, we were 140 miles away and under a different health authority. She could have responded to my letter suggesting I see my GP for a referral to a local specialist, but she didn’t. A few days later I received an appointment to go and see her almost immediately.

It’s strange that I don’t remember how we got to the station that morning after we left the house, or the train journey down to Peterborough. I felt dead inside. I just couldn’t cope any more. I was going to ask the consultant if Marie could have a permanent bed in the residential facility she ran.
I have a clear memory of being in the consultant’s office and Marie going into one of her screaming bouts. I couldn’t do anything with her as she sat on the floor screaming making it difficult to talk above her noise. I felt so useless and so drained and knew I brought the situation on myself. (Broken marriage – all my fault......)

On reflection, it was probably a good thing for the consultant to see Marie in one of her rages; seeing first-hand how difficult and how distressing the situation was for both of us. I asked her about the possibility of Marie going to live in the unit. I was filled with shame. I loved Marie so much but I couldn’t see any other way out. 

The consultant was kind and concerned and I was sorry to have put her in such an impossible situation. She knew me well and said she didn’t think I would like myself very much if I took those steps. She was right, of course. I began to realise sometimes it takes other people to remind us of who and what we are. 

We had a long chat and after reviewing Marie’s epilepsy and other medications she suggested a lower dose more frequently instead of a high dose at night and she would write to inform our GP of this.

I DO remember the train journey home that evening. We didn’t get into Liverpool until after eleven. I left the house earlier that day full of despair and returned feeling like I had been reborn. The doubt and uncertainty began to melt away and I decided we were going to be okay and I was in it for the long haul. Within a few days of Marie’s medication being altered the screaming bouts stopped and she gradually settled down at night. 
But the experience made me painfully aware of the difficulties parents of disabled children face. A child that does not sleep wears you down with the sheer endlessness of it all night after night. I was fortunate to have had someone to turn to.
That was in the late 70s. Today parents of special needs children would be lucky to meet a consultant psychiatrist let alone have their home phone number. Most of them don’t even have access to a social worker anymore.

Then along came the internet! The good old internet with its media sites and forums that gave us parents a voice that could be carried across the world.  Many of us were full time carers and the support we gave each other was a lifeline - an opportunity not only to share the joys our sons and daughters brought into our lives but also the chance to rant about the frequent injustices we met head on.

A lot of Mums found an outlet in blogging about their daily lives and as I read some of their stories the hair stood up on the back of my neck. I tend to read blogs rather than write them but a burning desire to share their stories with a wider readership motivated me into convincing these women how amazing they were, (they really had no idea!) thus creating the Warrior Mums.

Initially I imagined a couple of pages with a few photos, but the more I learned, the more remarkable I found each and every family and the more I encouraged them to share the sadness and the joys of how their lives panned out.

The Warrior Mum journeys were featured in my blog every Sunday and became an immediate hit, read by people from all walks of life and discussed on Twitter for days afterwards.

I am so honoured to have 'met' these wonderful women and thank them from the bottom of my heart for their generosity of spirit, for opening their normally closed doors and dredging up memories they probably preferred to forget  - in order to help others.

I hope this book will take you on a journey of enlightenment.
For new parents it may give you pointers and lots of hope to know these Mums once felt afraid and bewildered just like some of you do now, but they came through and grew to love and accept their special needs child just like you will.
For professionals: some of you may have been involved in these journeys and had a positive impact on the family’s life. And for those just starting out, take these stories with you and remember, as Warrior Mum Donna Street says in her journey, you have a chance – an opportunity to do good, but you have to want to....


Thank you from Jan Tregelles



As Chief executive of the Royal Mencap Society, and also as a mum, I have the utmost respect for parents and carers, many of whom sacrifice a huge amount, but also gain a huge amount of joy and insight, from caring for loved ones with a learning disability.

Family is at the heart of the Royal Mencap Society. We were founded in 1946 by Judy Fryd, mother of a child with a learning disability and, 65 years later, family continues to be at the heart of everything we do.

We are honoured that Mencap has been chosen as the beneficiary of this book. We are also humbled by these amazingly brave women who have shared their stories so powerfully. It is only by harnessing the love, positivity and hope of all the people with a learning disability and their families that we will be able to change things.

In your name, and in the name of all people with a learning disability and their families, Mencap will continue to fight to ensure that everyone has the freedom to live a life without fear and without limit,

Thank you,

Jan

Jan Tregelles, Chief executive, Royal Mencap Society





Say it with photos –


"OMG I'm in a book!" The smiling face of a warrior mum

Wendy Hirst

 
Hayley Golenioska





 
Emma Murphy





Sandy Costall



 
Lesley Chan






Jane Raca

Clair Carbold




Justine Bailey



Julia Donal


 



Jo Worgan
















And not forgetting our guest international Mums..


Jen Anderson
Mari Nosal






A special tribute to Australian Mum Marie Greening Zidan.. The Wonderful Mother She Was..


Other blog posts about Warrior Mums book Release

Hayley @Downsideup


Justine Bailey


Wendy Hirst at Savette.com





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