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. 

Bath-Time.

Half term has come and gone. I’m not going to pretend that I’ve just about survived, and am now counting the minutes until they go back to school. I’ve never felt that way about the holidays, and after twenty years as a parent, I feel that way even less. You see, I now know from experience that one day your children grow up and fly the nest, and then you don’t get to see them for weeks and weeks at a time. And then you miss them like hell. That, without doubt, has been the hardest part of parenting for me.

After a couple of days away from home I’m usually good and ready to come back to my gingerbread-latte cottage on the edge of the woods (this is no word of a lie – my house really is just five minutes walk away from the enchanted woods at Bradwell, that magically make all the noise from the A500 disappear). But this time I wasn’t – we went to Bath, somewhere I’ve wanted to visit for years, and it was so lovely I could have happily stayed a few more days.

It’s obviously a prosperous and well-heeled place, but unlike some of the prosperous and well-heeled towns of the South-East commuter belt that I have been in, Bath, in the South-West, was very friendly. We were made very welcome (and didn’t get called ‘fucking idiots’ once for the crime of being unfamiliar with the town). Even though when we arrived it transpired that ‘we’ had done something idiotic – and booked a room for one person for three nights, instead of for three people for three nights. The hotel was in the middle of a refurbishment and there were no family rooms available. And there was no lift. This was not a problem for us, but a right pain in the arse for the manger who had to somehow manhandle a truckle bed up two flights of stairs.

Freddie wasn’t keen on the idea of spending three days in a (place called) Bath, to the extent that we had to write ‘Somerset’ on his schedule, but once we set off (for Somerset) he was as good as gold. I mean, really, really good – even by ‘typical kid’ standards. I don’t compare him to other eight year olds – he’s more like four (ish). And, of course, he has a degree of learning disability, and a profound preference for routine and familiarity. All this considered I’m really impressed with how well he behaved. We had only a little minor resistance to the rituals of getting washed and dressed, even though this is very often a major bone of contention at home; and a couple of incidents of spitting out food that offended him in some way (though it goes against good manners, this is a perfectly natural reaction to having something in your mouth that tastes or feels unpleasant – I just need to work with him on finding a more acceptable way of dealing with this situation).


Having inadvertently gone to see the ‘Peppa Pig Cinema Experience’ last Saturday, he was quite happy to go for a ride on an open-topped bus (and if he was disappointed that the queen wasn’t driving he didn’t say). He got a bit fidgety, but you’d expect that of a small child. He did quite a bit of ‘self-talking’, something he does a lot of and which borders on echolalia at times, but everyone was busy listening to the (very entertaining) tour guide through headphones, so I don’t think it was noticed. I was surprised to find that several days later Freddie remembered that the guide had used my head to demonstrate a Georgian nit-scratcher, and did his best to tell his Nana.



At the Roman Baths we debated trying to pass him off as an under-five – we were using the major buggy as his latest pair of DAFOs were rubbing his insteps, making him reluctant to walk – but since he knows very well that he is eight, and is perfectly capable of saying so to anyone who asks, we decided not to risk it.

When Daddy asked the young man at the desk if we would have to leave the buggy there, he said:

‘It looks to me like your child uses a wheelchair. Does this indicate that there is some kind of diagnosis or difficulty?’ When we told him Freddie has Down’s and why we sometimes need to use the buggy, he told us that Freddie was entitled to a concessionary rate, and that a carer could accompany him for free. He then pointed out the locations of all the lifts on our little map, and attached a key for the accessible toilet to our audio guide gadget. If only everywhere was so helpful.


‘Lady Flavia’ and her, sadly, nameless slave noticed Freddie’s lamb skin buggy liner and pointed out that it is an aid to comfort that has been in use across the millennia – they were using the very same things to cushion themselves from the cold stone wall. They stayed hilariously in character no matter what you said to them.



I was almost disappointed that Freddie didn’t shout ‘buttocks!’ when he saw the naked Roman bathers (ladies only) projected onto the ruins of the Calderium. It would not have required any explanation, unlike the ‘dozy tit!’ incident in the local museum. We have since learnt not to describe his sister’s bedroom as looking like ‘a bombs hit it’.

All-in-all it was a very ‘grown-up’ break even though Freddie was with us. We even managed a swift half in a little pub one afternoon – Freddie sat quite happily in a big leather armchair, reading beer mats and arranging them in patterns on the table while we enjoyed a glass of craft ale (just the one, mind you, before anyone gets their knickers in a twist and starts speed-dialling social services). Because he was so good we took him to his favoutite fast-food place after, and then it was our turn to amuse ourselves while he enjoyed a treat. Our lives may be different to our friends’ lives in some ways, but I can’t honestly say I feel that we miss out on much.

So, that was half-term Odd Sock style. Could be worse, could definitely be worse. And if Freddie took nothing else away from our trip, he knows what a Georgian nit-scratcher was used for.

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”

http://community.fireflyfriends.com/blog/article/of-bikes-and-unicorns

Stoke-on Trent suffers from a bad press, but here at The Odd Sock Diary we are in the business of challenging negative stereotypes, so we are introducing Freddie to the culture and heritage of our home town – and we’d like you to join us.The Potteries Museum and Art Gallery has the biggest collection of fine ceramics in the U.K. – even better than the V&A. Mind you, they almost had one less – moments after this picture was taken, Freddie was in the display and all the alarms were going off. It’s a good job I’ve got nerves of steel and a brass neck! #thinkagain #sot2021 

#proudtobestoke #culture #downsyndrome #post40blogger #SENblogger #mummyblogger

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.

16/12/16 Christmas Jumper Day

So, that’s Freddie packed off to school for the last day of term, a turkey dinner with his chums from Class 3, and his FOURTH Christmas jumper day (all fundraisers). Oh well, at least he’s getting his wear out of it. And he does love a Christmas jumper – here’s an old post about Freddie and his Festive knitwear: https://kerryfender.wordpress.com/2016/10/06/fashion-advice-for-the-nipt-generation/