Posts Tagged ‘Epilepsy’

Justice For Laughing Boy

Justice for Laughing Boy By Sara Ryan

I remember it well. I was only too happy to hear my email ping and find the next bulletin of the Laughing Boy blog arrive. I opened it somewhat surreptitiously, sitting as I was in a busy but boring workshop, and read on. I read that Laughing Boy had died.

I felt physically sick. I left the conference hall  and cried.

I still think of LB often.

In Justice for Laughing Boy Sara Ryan tells the shocking story of how her son Connor, Laughing Boy, died in an ATU in Oxfordshire. He was a handsome young man with the future ahead of him, ideally involving a, ‘haulage company and a beautiful brown eyed woman’. He had learning difficulties and epilepsy and as some young men do was experiencing a hard time with anxiety and sometimes unpredictable rage. He was admitted to Slade House in Oxfordshire, an NHS Treatment and Assessment Unit, where he was under the care of a team of psychologists and ‘experts’. This is where he died, a young man with epilepsy drowned unattended in a bath.

This book is written with all the warmth, charm and humour that drew me to Sara’s blog in the first place. Many anecdotes stick with you long after reading. Many are laugh out loud funny. But what is not funny is that Sara has spent the last 3 years searching for accountability, apologies and justice. This is a story that starts with the joy, the unpredictability and the simple weirdness of living with a dude like Connor and moves on to the massive unrelenting task of fighting for justice 3 years after his preventable death.

Sara and her incredible band of supporters have waged war on a system that is convoluted, obfuscating and weighted against families. With resilience and tenacity they have stood their ground, they have pushed and cajoled as they fight to bring some kind of meaning to this awful and untimely death. Some of this has been played out in public meetings, court rooms and lawyers offices. Some of it on flags at festivals, on buses in Asturia and much of it on social media in a campaign that has caught the hearts of thousands.

But from every angle this has been an unjust war. Why should a mother have to fight so hard for justice when her son died in an institution charged to help him, in a bath.

This is a book that should never have had to be written, but it is a book that demands to be read.

 

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Take Good Care

It has taken  a long time to identify myself as a carer, one of the almost 7 million in the UK. Increasingly, I realise that the demands of looking out for someone 24 hours a day, however much I love her, places me firmly in that camp. The additional needs which can range from providing a literal shoulder to lean on, to recruiting carers, to administering life saving medication, to witnessing horrific seizures has eventually convinced me that this is an out of the ordinary parenting role.

I was shocked recently when asked that simple question, Whose mask would you put on first if a plane was going down, yours or your daughters, to answer without hesitation my daughters. It is a cliche but a telling cliche.

It becomes a habit to think of others before ourselves. Not in some kind of angelic, saintly way but as ritualised behaviour often accompanied by, said with a hint of shame, resentment. It can be annoying, irritating and frustrating to be seen as somehow better than others, more rounded, more able, when actually what we often feel is overwhelmed by sadness and fear. The sadness that it has always been this way and always will be, and the fear that we may be unable to continue both emotionally and physically because the tank is empty.

It is an essential truth that carers need to look after ourselves but it is not something that always comes easily. Many carers have to be given permission to do this, convinced that essence of you is caring for others and time spent not doing this is indulgent, wasteful and frankly flaky.

Yesterday in a yoga class we were working towards an arm balancing pose, astavakrasana, when I ended up in a crumpled but smiling heap, not quite the desired effect and luckily no accompanying photo. The lovely, downtoearth yoga teacher explained that the pose was like dealing with a difficult person. You do not try to address all the difficulties at once, you take them small step by small step and eventually you may have a better relationship  with that person.

This is the same for carers. You cannot expect to make peace with the enormous and life shattering change that is being a carer in one step. You cannot learn to look after yourself overnight after years of neglect, but you begin to build small moments when you find yourself again. Mine are often found on the yoga mat, where do you find yours?

 

 

 

 


So how is your daughter?

Why is it 19 years after my daughter first started having seizures that I am at a loss to be honest when people ask the simple question,’ So how is your daughter?’

I run through my range of responses: the downright dishonest, ’ yes, good thanks’ or the ambiguous, ‘just the same as usual’ or the deflection,‘not too bad but I heard you have had terrible flu’ or the little bit more honest, ‘ oh yes, she’s had an awful seizure,’ followed up with the reassuring, ‘but she’s just gone out to yoga tonight’ or the downright disingenuous, ‘ a little bit peaky’.  Read More…


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