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I love water.  I love the noise that water makes as it moves, gurgling from taps, trickling over stones, drops plopping from the eaves, squirts gushing between closed lock-gates, torrents roaring over mountain waterfalls,  waves swishing onto sand and the rattling suck of pebbles in the backwash.  I love the feel of water, the sticky buoyancy of the sea, and the icy silkiness of upland lakes, the invigorating needles of a power-shower and the relaxing warmth of bubbles in the bath.  My grandparents lived within sight of the sea, in one of the sunniest parts of Britain, and at least half of our school summer holidays would be spent staying with them.  Every day was a beach day, apart from the rare ones when the rain was really driving in.  Every beach day I would spend hours in the sea, tumbling in the surf, to the point where my mother would come and drag me out, scolding, before I took hypothermia (again).

I’m not too keen, admittedly, on the chlorinated, eye-stinging properties of swimming pools, but could have spent all day in the enclosed, blood-heat, high-density saltwater pool, lit only by flickering candlelights and a starry ceiling, that I discovered a few years ago with a group of girlfriends on a day-pass to a spa.  It was like floating in the calmest, most comforting sensory room ever.

And when I was doing finals revision at University, I spent hours in the bath, reading and revising, topping up the hot water every twenty minutes or so.  The literal and metaphorical dampening of sensation, the cloister-like whiteness of the bathroom, helped remove distractions, enhance focus, and wash away my rising sense of panic whenever I let myself contemplate the gap between my current knowledge and what would be required from me in the exams.

Apparently, when he lived at home, Connor Sparrowhawk loved spending hours in the bath too.  Perhaps he found the reduction in sensations helpful.  People with autism, like Connor, can get overwhelmed with the volume of sensory inputs coming at them from all directions in the everyday world.  Some are helped by darkened rooms, some by wrapping in weighted blankets, some by other ways of isolating themselves from the noise and the haste.

After Connor developed epilepsy with tonic-clonic seizures in his late teens, his bathtimes had to become less isolated.  His mother or another family member stayed within earshot and only just out of arm’s reach, at all times when he was in the water.  Sometimes they would be there for two or three hours.  It was exasperating, when there were so many other things to be getting on with, what with household tasks, and looking after other children in the family, not to mention fitting in dual careers.

One expects to supervise one’s toddler in the bath, and to be within earshot of one’s eight-year-old, but one’s eighteen-year-old?  Not so much.   I expect Connor’s mother got as exasperated as mine did with her child’s inconvenient affinity for water and the level of supervision required.  Still, it had to be done, to keep Connor safe, and it was.  Every time, for all the time it took, other things were put on hold, subsumed to the need to allow Connor to implement his coping strategies in safety.

Then Connor was admitted to hospital.  Initially it was expected to be a short-term placement, although it hasn’t turned out that way.  Connor’s family described his coping strategies to the staff.  They explained about his epilepsy.  But his mother became worried.  She was noticing signs that Connor had been having seizures, but the hospital staff were not taking her observations seriously.  One time, when she pointed out that Connor had a badly bitten tongue, a symptom strongly suggestive of major seizure activity, the only medical treatment ordered was… Bonjela.  Which might have helped the tongue, but did nothing to control the seizures.

I expect you’re way ahead of me.  On the 107th day of his hospital stay, 4 July 2013, Connor went for a bath.  The staff – the staff whose ostensible purpose in the hospital was to provide care for Connor and the other patients, the staff who had no distractions from younger children or other paid work, the staff who were paid to be there and to be focussed on Connor – were not within earshot, never mind arm’s reach.  They were nowhere near.  They did write down that he got into the bath at 9am.  They then didn’t check him for fifteen whole minutes.  

In that time, Connor had a seizure, slid under the water and drowned.

 

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Connor’s mother, Sara, tells the full story here:
http://mydaftlife.wordpress.com/

She, of course, tells it much better than I can, but I make no apology for repeating it.  Connor’s story needs to be told, over and over again, until the care that is provided to people with disabilities of any sort – intellectual, neurological, physical – is centred on the person and on responding humanely, as a fellow human-being, to individual needs.  Not on processes, pathways, and systems-based gobbledegook.

On 19 March, it will be exactly one year since Connor was admitted to hospital.  His family’s supporters are organising 107 days of action, to make sure that his story is told over until the right changes are made.  What could you do?

You can find out more and sign up here: http://107daysofaction.wordpress.com/how-to-get-involved/

Thank you.

 

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