31.07.18

We are talking about the weather again. It’s been so unusually hot for the past few weeks and we’ve had to adjust our outings to avoid the midday sun. Our daughter is particularly sensitive to it, being fair of skin and hair, having a compromised thermostat in her physical make up which means her body can’t always adjust to the ambient temperature.

Last weekend we went to the local Disability Pride festival. There was music and dancing, a chance to get together and celebrate life and its challenges. It was a boiling hot day and the there wasn’t much shade in the seafront venue. We coated our daughter in sunscreen and made sure she kept her hat on, all the while dodging in and out of the various tents, seeking refuge in the shadows.

While watching one of the acts, we found ourselves beside a young woman who occasionally shares an activity with our daughter at one of the centres she attends. She was hatless in the blazing sun, her chair facing away from the performers. Her carer chatted a bit to us while her colleague, with another service user, also in the sun, was on the phone. It seemed to us – wrong. And we felt uncomfortable.

Why wasn’t this vulnerable person wearing a hat? And as she wasn’t, why was she not protected against the glare and scorching heat of the sun? And why was she turned away from the action? How dare the other carer chat on her phone while she was at work? We’ve seen this so many times, carers chatting on their phones.

Then we paused and thought for a moment.

It’s taken years for our girl to tolerate wearing a hat. Her sensory defensiveness and aversion to having something clamped on her head has been a real issue for her. For many a season we tried unsuccessfully to convince her that wearing a hat was a good thing and she’d get used to it. Summer for the sun, winter for the cold. We’ve tried all sorts – baseball caps with peaks of all sizes, floppy cotton sun hats, wide brimmed straw hats, bobble hats, beanies, furry caps with ear flaps, woolly hats with strings tied under her chin – you name it. 

Each would be instantly pulled off, thrown to the ground, discarded. We’d try anything to distract her, to surreptitiously place said item back on her head, again and again, until finally we’d have to give in and admit defeat, ordeal over once more. Gradually she endured the hat for longer periods before shaking it off. And gradually the times we had to retrace our steps looking for a lost hat lessened. They haven’t entirely gone.

One day something clicked into place. A friend gave our daughter a bright pink cap that somehow just seemed to fit. Like a glove you could say. She didn’t seem to mind it much, surprisingly, and it stayed on. Well, for most of the time. It’s well travelled by now, faded and worn, a treasured possession. It’s a permanent fixture in her summer backpack. Her winter bag has a woolly hat with flaps that she’s had for years too. Beware anyone who mislays these, they are irreplaceable.

So who were we to judge the carer of the young woman we’d met after our own experiences of so many years? How many times had we unknowingly been judged by onlookers thinking we didn’t care about protecting our girl from the elements? Perhaps the young woman also had sensory difficulties. Perhaps her carer hadn’t wanted her to miss the event and had taken a chance on there being more shade than there was. Perhaps she had simply forgotten to bring a parasol. Perhaps in the end the young woman simply hadn’t wanted to watch the show. Was the phone call the other carer was engaged in work related after all?  And yet…

We bid our farewells and went home.

Tomorrow strong wind and storms are predicted. Not easy hat weather, that.