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

Michelle

8 August 2013

MENCAP LEARNING DISABILITY WEEK 2013 - MY DAUGHTER - MY SUPERHERO


Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero?

This is Marie in 1970 when she was 5 years-old and I was 16. I met her when I left my home in Liverpool and went to work in a children's home in Bristol. Marie has cerebral palsy and a severe learning disability and because she was unable to walk and dragged her feet along the polished floors, the nuns locked her up in the pram store room all day or left her sitting on her cot. She was the only child with a disability and had such a miserable life.

When the home closed down and with nowhere else to go, Marie was sent to live in a large hospital in Taunton, Somerset, and on the day I took her I was offered a job there as a cadet nurse. My heart ached for this little girl and at the time I would have done anything to stay in touch with her, so, of course, I accepted the job.

The hospital was enormous and so impersonal. The only stimulation for a day-room full of children was the clatter of the food trolley that called to the ward three times a day. It was so unhomely and no place for a child to live. I made a hard decision and left the job, vowing to try and get Marie out of there too.
I set about tracing Marie's mother who made me the child's legal guardian so I could bring her out of hospital to live with me. Our first 'home' was my sister's old schoolhouse. She was a student in London and she and her husband only used it at weekends. It had no inside toilet and only a cold water tap but I didn't care and Marie didn't notice. She was still in nappies and I used to boil the water to wash them and also to bathe her in a tin bath every night. We were together and that was all that mattered. At long last, I was her mum and she was my daughter. 
Michelle Daly photo - Warrior Mums
The photo on the left was taken in 1972 by Woman's Own magazine, to celebrate the fact that I was the youngest single woman in Britain to obtain legal guardianship of someone else' child. It kind of implied that Marie was lucky to have me but even then, 41 years ago, although Marie's legs are shorter than mine, she is leading the way for me to follow - and I think that's how it's always been. We got an award that same year for bringing sunshine to the newspaper headlines after our story was serialised in the Sunday People. In her own way she's taught me so much about human nature. Her disability has brought out the good in some and the bad in others and she has brought far more into my life than I ever brought into hers. No matter what obstacles I have to face - and there have been many - she always makes me smile, putting things into perspective.
Although Marie's speech is very limited her voice has always been heard loud and clear and I like to think she has a very good quality of life. She gets 18 hours support a week and is able to access the local Day Centre with her support worker for three afternoons where she can come and go as she pleases. Choice is so important and I always ensure Marie gets hers. 
Last year I wrote a book about our lives together With a Little Help From my Friends. Some people say it's the most inspirational book they have ever read and that gives me great pleasure.
Marie is now 48 and I am 60. I feel so blessed to have met her all those years ago. We've probably made each other the people we are today. We were destined to meet and there is no doubt about it.


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