I steal the briefest moment to glance up at the family rooted some twenty feet from the convulsing body of my eight year old boy. His limbs lock out and his eyes roll up into his head,air straining from his lungs in a low groan. Its these little details I’m glad they cant see. Its … More The burning fire of attention-Epilepsy and the origin of fear.
Looking up at the shards of light peircing the copper tinged lake water as they danced in imitless variation i could hear the bubbles of air rise around me. The moments beween skimming along the waters surface at the bow of the small sailing dinghy like a skillfully hurled pebble to slowly feeling my life … More From way out here, your games look so funny..
…the lady behind us in the checkout queue smiles down at him. My son’s black protective bump hat tacitly advertises the fact he has “special needs” like a corporate logo. I know whats coming and recite the off the shelf phrase in my mind. She says her bit : ….”hello you, i like your t-shirt, … More A language far older than words
Sleep deprivation has been widely aknowledged as perhaps one of the finest tools in the interogators repertoire. As a method of torture its effectiveness is matched only by its simplicity. Having once spent somewhere between fifty six and sixty highly active hours on the bounce during my time as a reconnaissance specialist in the armed … More What my epileptic son can teach the armed forces about sleep.
….timing is every thing. The very second his limbs lock out, the loud gasp of air involuntarily forces its way into his lungs or he flies backwards as though struck by an invisible hand with a force that looks far too powerfull to ever be experienced by an eight year old boy, the timer starts. … More ….is this the one that kills him ?
Anyone (certainly in the UK at least) bringing up a child with learning or behavioral difficulties will be familiar with those ubiquitous phrases : “special needs”, “addition needs” or my personal favourite “challenging behaviour “. It costs something to bring up and care for a child, or adult in these circumstances, this is the unspoken … More Why our disabled children make us stronger
Almost as soon as I found I would be a father, it seemed my own life, that is to say the part I had been genetically programmed to preserve at all costs had become external- existing for the greater part in the little life being formed over the next nine months that would become my … More Being told your child’s about to die.