"You will want her on your side and want to be on her side"
is what one reviewer wrote of my autobiography, With a Little Help From my Friends.
|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."