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 - - tow 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

16 January 2013

THE RIGHT TO BE ME

 

 

"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." 





2 comments:

  1. SO so glad that you are Marie's mum you love her and know what works for her and fight her corner, and yeah I tell them to go to hell what do they know. If any special needs child/adult has something that makes them feel happy and safe, why should it be taken away from them or a parent/carer be told it's not age appropriate that's ridiculous. Oh really annoys me, that they just can't see how something precious to Marie is what makes her happy surely anything that makes Marie happy is what it's all about. People caring and finding what makes that person happy is paramount.

    Love Sophs xxx

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    Replies
    1. Hear hear, Sophie! Tha'ts why parents always have to speak out and challenge what they do not agree with. Having said that, we only have to read warrior mum Finola Moss's dreadful story about Issy to see how our voices our now being silenced. That's why we have to stick together and look out for one another because these days looking after a vulnerable adult is an uphill battle not so much because of the practical caring side but because of the bureaucracy we have to put up with, all this 'best interest' crap, and the reams of form we find ourselves submerged under.

      Thanks for stopping by and leaving a comment, Sophie, I really do appreciate and value your opinion. xx

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