Parents Not Spoken To Enough

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Having just watched BBC Oxford News to see the report on Connor Sparrowhawk’s death (manslaughter) I am overwhelmed at the thought of what it must be like to watch that as his Mum and Dad. No matter how seriously and gravely reported, it is still a news item for the day. Done and gone and finished for many viewers and so too it seems for Southern Health.

The headline that resonated particularly with me was ‘Parents not spoken to enough”.

This will not be an unfamiliar concept to many parents, whatever their story, who are united in trying to access health and social care for their children. Unfortunately it seems even more likely if your child has a learning disability and is going through the difficult transition into adulthood.

Through personal experience I know that to be treated like you are some incompetent fool is bad enough but for that attitude to lead to your family member becoming harmed is torturous.

I sat in many many meetings with gritted teeth and red hot cheeks as I was referred to as “mum” and my daughter discussed as if she were more known to the complete stranger considering her needs. The stranger who had not even seen a photograph of her let alone the many albums and films and artefacts that made up a full and rounded and joyful picture of what was her life and the family who loved her.

My daughter came to serious harm because I wasn’t listened to. In fact it was worse than that. I was observed, judged, assessed and written about in negative terms. After all what could be more difficult and outrageous for a professional manager than some pesky parent fighting for the safety of their child…..

The other blood boiling and potentially dangerous thing that happens is that your child is wrongly edited in assessments and reports. Only a parent knows the subtle nuances and messages in some children’s words and actions. It is the living with them year after year, loving them, caring for them, listening to them, knowing the non verbal cues that makes parents the experts. God only knows why we are not treated as such by professionals.

Connor would not have been put in grave danger and as a consequence die if his parents had been treated as the experts. They should have been talked to, listened to, respected, given the management responsibility over their sons care. And now that he has died Southern Health want Sara and her family to “move forward” and “move on”.

Of course now they will have to listen to the dreaded ” lessons have been learnt” get out clause statements which makes even the most unaffected member of the publics heart sink.

If they had learnt anything they wouldn’t use that phrase because they would know how jaded, hollow, crass and insulting it sounds.

They can’t learn because they can’t listen.

It’s Mothers Work

For many months now I have been following a blog by Sara Siobhan called “mydaftlife”. It is a blog that painfully unfolds to tell the harrowing and outrageous facts about how Sara’s amazing and healthy son LB was allowed to die in an assessment unit for adults with learning disabilities.

As a mother to a young adult diagnosed as learning disabled I have had to fight the system all the way. Even about whether she had any disability. Some thought her just plain “naughty” or me a ridiculous and incompetent mother. Her eventual diagnosis came so late in her childhood that her SEN educational support was practically nil and support to me in parenting her mainly punitive.

To many of us our children are not disabled, they are just who they are. Often amazing, intelligent, challenging and independent characters that others find difficult to pigeon hole. My daughter does not consider herself disabled or a slow learner, she is mortified and confused by the label. She believes its mainly the rest of us that are peculiar.

During her transition into adulthood, she like many teenagers, found life very challenging and as a result her behaviour expressed this. Suddenly my worth as a parent and her worth as a family member diminished. She was suddenly treated as an adult now responsible for her actions and I was no longer validated despite my extensive knowledge of her needs, individual likes and dislikes.

We are a large, close and happy family and are generally very creative in our problem solving on each others behalf. Because my daughters behaviour was becoming more aggressive and risky in public it was twice suggested to me, and to her in my absence, that she should go into an institutional setting.

The last suggestion discussed with her was an assessment centre for learning disabled adults. I voiced my horror and concern at the thought as television programmes, such as the one about Winterbourne View and all it portrayed, were quite fresh in my mind. I was reassured that things were different now. High standards of care etc etc. As it happens at the very last minute a family member stepped in financially to help me get some respite and a meaningful needs assessment from Family Futures. This private support bought me fighting time and my daughter is now living independently with the help of Direct Payments.

LB and his family represent the ones who have not been afforded this basic and very reasonable outcome. It is an outrage beyond measure that this tragedy happened to Sara and her family but as if this weren’t enough she has been subjected to torturous, disrespectful and cruel treatment by the health authority as a consequence.

We just wanted support to keep safe at home. We didn’t get it and we all paid the price in one way or another. My daughter came to serious harm but she didn’t die.

Many of us adopters will find we have children with at least “additional needs” even if we didn’t know at the beginning these needs will become apparent as time passes and our children don’t fit into the rigid systems provided to them.

Learning disabled children and adults deserve better support. Please share Sara’s story linked below with anyone you feel may be able to highlight the campaign for a cultural change.

http://mydaftlife.wordpress.com/2014/02/23/the-sound-of-candour/