Today is forecast to be the hottest day of the year so far and people are gearing up for BBQs and beer gardens. Blue skies and sunshine make most people smile; everything seems brighter than on a gloomy day . It is areal treat to be retired for these bonus summer days, as usually the best weather falls on weekdays and then the gloom sets in again for the weekend, but we are able to make the most of it with maybe a walk, bike ride or working, then lounging, in the garden. It falls on a Friday, which is a daycare day too, so we can enjoy the promised sunshine without worrying about Joshua, who is not great in the heat.

There are a couple of reasons why the heat is bittersweet for Joshua:

  • Getting overheated is a key epilepsy trigger for him, so a warm day is always tempered by anxiety around keeping Joshua cool. His thermostat seems to be faulty : when he gets too cold, he is unable to warm himself up again, until he hits the bath. And when he gets too warm, he tends to get hotter and hotter, until his body reacts in seizure activity. But today that is Daycare’s responsibility to keep him cool and he has a planned swim , so that should be a perfect activity for a hot day. They have a fan at the facility and they tend to wedge the door open with a Giant Connect 4 game, using it as a safety gate. We have over the years, had to spend many a sunny day indoors, out of the heat, but not today. We are lucky in that our old house is quite dark and manages to stay cool, downstairs at least, so he can always escape the heat into our cool haven.
  • Joshua has fair skin and so we have to protect his delicate skin in the sun. He really dislikes having sun-cream applied but needs must. We tend to buy P20 which is liquid rather than a cream, so it rubs in easily and it only has to be applied once at the start of the day and he will be protected all day, even if he goes in the water, so that is genius stuff. During the summer, I will just apply that as he is getting dressed and then it can be forgotten. The only difficulty with it is that he screws his face up, while I apply it on his face, so that it has run into his eyes in the past and that then really stings. But we have not found a product that is better for us all yet.
  • Joshua can be reluctant to remove his clothing in response to being too hot. I will dress him in shorts and t shirt this morning, but when it is cooler first thing, I tend to dress him in a hoodie or sweatshirt at first. But then I find, later in the morning, that he is reluctant to let me remove that outer layer, as though it is some kind of comfort blanket that he will not release. So perhaps it will be best to send a jacket into daycare in his bag but not to dress him in it today. It is difficult to always dress him appropriately when you know that he will not recognise that he needs to either remove or put on a layer for himself.

I am not great in the sun either to be honest, I might sit in it for ten minutes and wax lyrical about how lovely and relaxing it feels. But I will then jump up and go indoors, because I am too hot, too sweaty, too uncomfortable. We are lucky enough to live by the coast and so our temperatures are always lower than even just a couple of miles inland and we usually have a sea breeze, which helps to feel cooler too. My niece and her fiancé arrived in Greece for a week’s holiday yesterday, about which they were very excited, but I have to say that I am not envious of the heat they will experience there, even overnight – I am much better suited to the UK climate.

So enjoy the sunshine everyone.. at least in the UK, we know that a heatwave will not last for long and we will soon be complaining again about the weather.

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