Flaming June.

It’s Summer at last – the best three days of the year!

Actually, for us it hadn’t been the best. Freddie has been really struggling with the heat this weekend.

He had trouble regulating his temperature when he was a tot; any moderately warm sunny day would see him burning up and coming out in a dusty-pink rash all over. 

As he got older the situation seemed to improve, and over the past couple of years we have even managed a couple of holidays in Southern Europe where the thermometer has hit 40 degrees at times, and he was absolutely fine. We are careful to keep him well hydrated, and either in the pool or in the shade; and we always take the buggy with its enormous sunshade (which is now a bit warped from being crammed into the kind of tiny suitcase it is necessary to take on a Ryanair flight if you don’t want to end up spending more on your baggage allowance than on your flights and accommodation combined). We’ve had a few running battles over sunhats, too, which have resulted in some very fetching photos of him in a spotty Pudsey bandana looking like someone’s Nan.

This weekend, though, he’s back to struggling again. He was listless and so warm to the touch on Saturday that his Nanna Jean gave him a hot water bottle full of cold water to hold to cool him down. 

On Sunday he was listless still, and also grumpy. We could hear other kids in other gardens splashing in paddling pools, and felt guilty that, when we moved to this house, we got rid of the snazzy pool Freddie’s brother and sister had when they were little: we’re on a water meter now, and I’ve had a fight in my hands to stop Daddy drawing a maximum-fill line an inch or two above the bottom of the bath, like they did in WWII.

Then I remembered the little inflatable dinghy that my parents bought many years ago in a fit of seaside enthusiasm when we all went on a communal family holiday. Harry and Lucy were 5 and 2 respectively. We never dared let them have it on water; we always used it inversely, as a supplementary paddling pool. We found it stowed away in a corner of the shed where its rested, untouched, since we moved in. Since Harry and Lucy are now 20 and 17, it’s a testament to the quality of the thing that it still inflates, and stays inflated if you stick a bolt in the end of the valve that’s lost its cap. 

I’m pretty sure the boat is supposed to go in the water, not the other way round!

By Sunday afternoon, though, Freddie was distressed and burning up. Calpol, the parent’s friend, was the only thing that provided relief, but before the four-hour gap between doses had passed his temperature was beginning to climb again. Yet we could see no obvious signs of illness. 

When I went to get him up on Monday he said ‘forehead hurts’. I’d already decided to keep him off school. I opened all the windows and rigged up some makeshift shade in the garden, but he wasn’t in the mood for play. 

By lunchtime he was showing signs of a tummy upset, so we spent the hottest part of the day in the relative cool of the downstairs cloakroom. For the rest of the afternoon he lay on the settee on a cotton sheet. He had a strop because I thoughtlessly provided a patterned one instead of a plain white one, so I turned CBeebies on, and that put a stop to that nonsense. 

The only fan I could find was another ancient artefact. I might as well have stood there blowing on him myself, to be quite honest. By evening he had no energy left for any kind of nine sense, poor little chap. But Nanna Jean came to the rescue – she remembered that her fancy Dyson heater blows out cold air if you press the wrong button, so she bought it round and we left it trained on him all night. He had a much better night’s sleep: we, however, lay awake picturing the electricity meter whizzing round so fast that it would eventually burst out of the meter cupboard and soar into orbit, decimating members of the Dawn Chorus in a blizzard of feathers on the way. 

I don’t know whether the headache and tummy upset were caused by the heat, or whether it was the brewing bug that made him less well able to cope with the temperature. Today he seems a little better and it is a little cooler. 

You know, our normal British weather isn’t really all that bad when you think about it. 

The Opinionated Woman.

Hello. My name is Kerry, and I am …

an opinionated woman.

I forget my place and state my opinion publicly, even though a woman of my background *must* be too unintelligent/uneducated to form an opinion worth holding.

If anyone challenges my opinion I defend my position – instead of meekly backing down like a ‘nice’ girl and accepting that they must be right even when their objection is based, not on some flaw in my argument, but on some flaw in my character or background that automatically invalidates any opinion I have.

I am guilty of forgetting that some people have a greater right to state their opinion than I do, and this right is not necessarily based on knowledge or experience. I am guilty of forgetting that I must not answer back to those who are my ‘betters’ in this hierarchy, even when their opinions are baseless to the point of inanity, or may be offensive or harmful to others.

Sometimes I am rude enough to prove my point.

Hello. My name is Kerry, and I am a Nasty Woman.

Several times during the past week I have been told that I should not share my opinion, and I should not answer back; because I’m not intelligent enough, not educated enough, ‘don’t get out enough’, it’s ‘not nice’, it’s ‘aggressive’.  Now, when I share an opinion publicly I am aware that not everyone will agree with me, and I am prepared for some to tell me that I am wrong, but I would expect them to come up with some valid reasons why I am wrong, and to educate me in the error of my ways with solid argument. I do not expect to be ‘shut down’ simply by being told that I do not have the right to state my opinion. I do not expect to be told I show not openly disagree with those who state an opinion which may be offensive or harmful to others because ‘arguing causes upset’.

I might have been prepared to concede that during the election campaign, since I’m just a private individual, not a party activist engaging with the public, or an influential person with a huge social media following, it might have been better to keep my opinion to myself, but then an issue much closer to home came up, and once again I was told to shut up.

A visitor came to our house, someone very close to us. We were talking about a TV programme, and our visitor stated: ‘the girl was a Down’s’.

They’ve used this phrase before, and in the past I’ve tactfully suggested that the phrase ‘girl/boy/person with Down’s Syndrome’ would be better. I said this again, but instead of ignoring me as usual, our visitor snarled ‘It’s OK because I meant no offence.’ I tried explaining why the phrase is offensive, even when no offence is intended. I was told to shut up, in no uncertain terms, by a third party. I tried explaining that adults with Down’s Syndrome, who are perfectly capable of understanding the issue and stating their opinion, have expressed a wish not to be referred to in that way.

I don’t care what anybody else thinks,’ our visitor said, ‘it’s what I’ve always said.’ Then they pointed at Freddie and said: ‘He will always be a Down’s boy to me!’

How I bit back my instinctive response to this I do not know. It was reprimanded for ‘going totally over the top’, it was ‘political correctness gone mad’. When I pointed out that ‘political correctness’ is an issue of basic respect for other human beings, I was dismissed as being ridiculous. Apparently Disability civil rights isn’t even a thing.

Later, after our visitor had gone, and things had calmed down, it was conceded that I had been substantially correct in what I had said, but that I still should have kept my mouth shut and let it go. Why? Because I had caused a lot of unnecessary upset and hurt feelings. I hadn’t been ‘nice’. I went to bed wondering ‘what about my feelings which have been persistently ignored? Why are some people’s opinions and feelings given priority over others, even when they’re acknowledged to be in the wrong? 

I know — First World Problems. I should probably shut up about it.

But when all is said and done, I’m not sure I’m sorry that I’m a Nasty Woman. I think I would rather be nasty, and speak up when I think something is wrong, than be one of the ‘nice’ people who keeps quiet and meekly ‘lets it go’.


Of Bikes and Unicorns: A Firefly Community Post.

Me and my attitude are on Firefly again. This time I’m ranting about having my real-life experiences dismissed as lies:”We are not walking around with ice cream cornets stuck on our foreheads pretending to be unicorns”


22/5/2017 A Pink Streak.

I was loading the dishwasher last night when a little pink streak shot past me into the kitchen, snatched something out of the drawer, and ran, chortling, up the stairs. LMonkey business was afoot. We’ve had to deal with some very challenging behaviour lately. I couldn’t bear to look, so I sent Daddy to investigate.

He was gone for ages. Meanwhile, I pretended not to realise that the lack of noise from upstairs was probably a cause for concern. I’d just finished loading up, and was contemplating accidentally-on-purpose dropping the last couple of things that wouldn’t fit in (because hand washing dishes is, like, sooo last century), when Daddy called me upstairs.

‘He’s been such a good boy’, Daddy said. Apparently Freddie had simply decided for himself that it was bath time, had arranged his shampoo, body wash, and the rubber hair-washing jug on the side of the bath, put his toilet seat and step in position, and got himself undressed before remembering to fetch his medicine syringe from the kitchen. By the time Daddy got upstairs he was already sitting on lavatory. Daddy ran the bath for him, but he brushed his own teeth, of his own accord, and washed himself all over. By the time I got upstairs he had his pyjamas on and was sitting in bed reading a book.

We praised him extravagantly, because this is just the sort of behaviour we want to encourage. But, not wishing to sound ungrateful, we’d like to encourage it to occur an hour later, at the usual time – because early to bed means a 5.30am wake-up call for Mummy, who doesn’t do that sort of thing (unless she’s catching a flight somewhere exotic. Which never happens. So no, she definitely doesn’t do that sort of thing).

Of course, this probably means only one thing – the rest of the week can only go downhill from here.

A Woman’s Right to Choose

We talk about ‘a woman’s right to choose’. Eight and a half years ago I exercised my ‘woman’s right to choose’ to the fullest extent. I chose to continue with my pregnancy knowing that my child would have Down’s Syndrome.

I am a rational adult. Given accurate and balanced information (that’s another story in itself) I am perfectly capable of evaluating the data and weighing up the pros and cons of any situation or argument. I made a conscious, rational choice in the full knowledge of what I was doing.
I made my choice knowing that I would not have to sacrifice my life, because nothing feels like a sacrifice when you have made the right choice.
I made my choice knowing that my son would not be a burden to me; he would be my child. Yes, I would have to look after him for longer, and he would always need more help than most, but he would bring me just as much joy, and love, and pride, as his brother and sister.
I made my choice in the knowledge that my son need not be a burden to you, the taxpayer, when he grows up (let’s face it, that’s what you mean when you talk about a burden on ‘the state’ or ‘the NHS’). We, his parents, are rational adults – we would plan ahead for his future, for when we are no longer here. I made my choice in the knowledge that my family also pays its share of tax (we don’t begrudge extra care to others who need more than we do, not even those who have smoked, drunk, or drugged themselves into an early decline – everyone has their frailties. And while we’re talking about cost to the state, let’s consider how few, if any, adults with Down’s Syndrome will end up in prison – it’s a valid point).
 I made my choice aware that my life would not perfect: it never has been, but then, whose is? Life does not have to be perfect to be happy. When you make the choice that is right for you, it is much easier to find moments of contentment day-to-day: this is the root of happiness.
So, if you see me and my son hand-in-hand in the supermarket or at the park, please accept that this is what a ‘woman’s right to choose’ sometimes looks like.

Because a ‘choice’ where only one alternative is deemed acceptable, is no choice at all.