Compassion

Compassion
Compassion

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 are not only a means of support but also 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 disabled child. Some 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 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.

A major concern that has come to light for me 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 having any contact or information regarding medication or any other health issues about your loved one's welfare, 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 - - tow the line, stop asking questions and taking too much interest or lose contact with your child.

I would suggest reading warrior mum Finlola Moss and also Leo Andrade's journey to see the dreadful way parents have their rights taken away and in Leo's case, often denied visitation with her autistic son.

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 people with special needs and depriving them of family contact, people who would have had more freedom in the 70s living in large 'institutions' than they do in community care and independent 'of family' living' today...

We have to do something to stop this illegal abuse of power. We have to do something now....

Michelle

25 October 2012

"WITH A LITTLE HELP FROM MY FRIENDS"

Well, it's finally here - that labour of love that has consumed me for the last two years - that is of course when I wasn't caring for my daughter. I don't mind telling you that juggling writing and being a full time carer to my lovely daughter has been exhausting. I know many of you will understand what I mean because lots of you are also carers. Our priority is to care and nurture a family member that is totally dependant on our love and support, which often leaves us little time or energy to develop our own interests. We become isolated and can easilly forget there's a world out there that still holds a place for  us.  


So last Christmas I made a pact with myself; writing and caring had to somehow be separated and I had to establish some kind of writing schedule or I would never finish my book. I needed peace and quiet, without any distractions.

I decided that when Marie went to bed at 11pm (well, she is 47!) that I would also hit the hay. I set my alarm clock for 2.30 in the morning and crossed my fingers. It was difficult at first. I would fall out of bed at that Godforsaken hour telling myself over and over it had to be done. It was the only way I would ever achieve my goal. I wrapped myself in my pink fluffy dressing gown and slippers (resembling a big fat marshmallow) and headed for the kitchen to make a cuppa. Then I lit a candle and placed that burning flame of hope on my desk, rubbed my sleepy eyes and switched on my computer.

1970 Age 5 Learning to walk
You see my daughter inspires me more than anybody. She has a severe learning disability, cerebral palsy, epilepsy, dysphasia and scoliosis, yet she goes to bed and awakes with a big smile on her face. If she can cope with all that life's dealt her then I should be able to do anything. No excuses. 

It was hard - so so hard, but I stuck with it night after night, week after week, month after month, until With a Little Help From my Friends was completed. 

I look back now and wonder how I did it. But I didn't do it alone. With my  lovely daughter's courage and inspiration and my determination, I say we wrote that book together.