The chocolate cake looked sumptuous in the catching rays of the afternoon sun. Our host slid the knife through the moist dark surface and the liquid chocolate began to pool around the base of the now crumbling sweet. I took a slice of the fresh dark brown treat and we sat picking up again the conversation of the Bristol Stools Chart.
Welcome to the unusual conversations between parents of children with special needs. Nothing too toxic or natural is off the menu. In fact most of the topics look like items on the menu, tuck in. Children with complex needs are obviously more prone to issues around bladder and bowel and these conditions often culminate in a get together where anything goes and rightly so.
Openly Discussing Stools
I never thought I would be openly discussing stools and the smell of urine with anyone other than my giggling contemporaries at primary school more than a trillion years ago. But talk about it again I do, equally as giggly but more wrinkly.
When your child is born nappies are a constant, but for many mums and dads the issue of toileting does not stop after a few years. In fact it becomes so constant that we roll our eyes when some parents endlessly complain about potty training…reality check incoming. Not all disabled children require a lifetime of catheterisation or suppositories either. For many of us it becomes such a day to day part of life you wonder at what point did we lose our gag reflex.
While the rest of the uptight UK spend all their time pretending toilet issues are private and a matter not for discussion, we have no choice but to discuss it openly as it affects the lives of the ones we love. A point in principle was last Monday when we visited old friends so our daughter could share her operation fears with her oldest friend, who also has a disability. The girls sat and talked surgery with a maturity that would stun anyone listening in, while we ate lunch and compared stories of urine infections, constipation and the perpetual question of how many bloody Movicol sachets should shift a lodged lump of matter.
Disabled Children Eat – believe it or not
It’s a rarely known fact (for those who refuse to be open minded) that disabled children eat! They consume like everyone else on earth, it’s a natural biological life sustaining process that obviously has an outcome. Coupled with issues of disability the mechanism needs a little assistance. As ever watching guardians we need to be able to spot or smell infections or blockages that take place as it could be pivotal in discovering a contagion. We smell pull ups, change bags, even note colour changes whilst happily devouring a biccie with one hand and juggling a cuppa in the other.
As well as the aforementioned toilet talk, we also discuss a wide topic of stomach churning procedures, samples and conditions whilst passing the brownies. Its reality to us, its the norm. It’s everyday and we laugh and swap notes on it all. To be able to be so honest and personal is a real testament to the community in which we thrive. Mums, dads, carers, we are trained paediatric nurses full time on a laughable Government carer allowance. We are fully entitled to talk botox without the vanity and diarrhoea without the political connotations.
The conversations we have are not restricted to us adults either. Our children, regardless of any communication issue often join in the chat, a sign of self acceptance and comical pride. Our daughter constantly laughs at the noises and the sometimes uselessness of the catheters, even comparing her bladder to Cher’s face as the botox clenches.
She compares the taste of Movicol to sick and shocks the outside world with a proud exaltation of a rare wind break. That’s kids for you. Disabled kids often make the best comedians and are completely open about their lives and day to day routine, to the point where you wonder how, as a nation we haven’t given them an allowance for brutal honesty.
No doubt many readers outside this blissfully close community have either stopped reading, opened a window or are furiously typing a complaint letter to another disinterested moral champion. Sorry, but to add to your angst or sickly feeling, these conversations happen in our homes and in the coffee shops.
It is frankly bizarre that much of the British public refuse to discuss these matters over a light lunch. Maybe we’re just the most open people on earth. Like mothers groups we meet anywhere to talk frankly and so we should, there is no shying away from s*** talk. So, while you eavesdrop enjoy your muffin and have a mocha…now, should that deposit look that green?
embrace your inner movements
By Dan White
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