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. 

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

6/12/16 The Candlestick Carousel

When your candlestick becomes a carousel …

Freddie is ‘suffering’ from more and more frequent bouts of imagination. 


We’ve been waiting a long time for this skill to develop (trust me – imaginitive play is a skill, and an important one). I did worry that he might never develop it, especially since he tends to choose to play alone rather than cooperatively with other children, although we, and his school have tried to encourage this: he will play quite happily alongside others, though. 

I have spoken to the LD nurse from CAMHS about the possibility that Freddie could have autism traits. She brought along the basic assessment that her Psychologist colleagues use, and we went through it at home. Afterwards we both agreed that it’s design didn’t really take into account children who already have developmental delays and communication difficulties due to other, specific causes. 

I asked her what the likely plan of action would be if he did have autism traits. As CAMHS are already involved, and Freddie already attends SEN school, she explained, then any course of action wouldn’t differ much from what we are already doing. So we decided not to pursue a definitive diagnosis at this point in time.

I’m not sure whether his lack of play skills is attributable to autism tendencies, or to his developmental delay, which is more profound, perhaps, than it first appears to be. I not sure whether or not the distinction matters, now that we know that he can develop these skills.


I predict Christmas Day will be spent with the whole family lying on their bellies on floor, playing with cars and building Lego. And enjoying it!

Some people take time to grow into their play skills. Others take time to grow out of them. 

#notsuffering #worldWITHdowns #lego #downssyndrome#mummyblogger #pblogger #SENblogger

3/12/16 What Have I Been Reading This Week?


 

Read any of the often somewhat heated discussions to be found on any special needs parenting forum or Facebook group, and sooner or later you will find someone obliquely hinting that if a woman has the time and energy to think about anything outside of her child’s needs, then she is neglectful. This week, then, I must have been an appallingly bad mother, because I not only found time to read, but I found the time and energy to get properly outraged by one of the things I read, and even to tweet about it.

Articles:

I can tell you what I wish I hadn’t read this week – an article by one Damian Thompson in The Catholic Herald.

The really sad thing is that the article was intended to raise the profile of a very worthwhile charity which aims to teach vital skills to young adults with learning disabilities, to enable them to find and retain employment.

The thing that came through most eloquently in his words was his distaste at having to spend a day in the company of those with learning disabilities; a phrase he describes as a euphemism for (get this) ‘mentally handicapped’ or ‘retarded’. He then went on to say that those of us who object to such phrases did not care about the ‘mentally disabled’, just about whether or not they were correctly labelled.

He describes playing a game of table tennis with young adults who, he suggests, were more childish than children. When he proved to be clumsy at the game he says that you ‘would conclude that I had a learning disability of my own’. You could almost see him, as you read, pulling a face, doing a stiff-legged walk, and making ‘duuuh’ noises, like a schoolboy mocking the disabled in front of his friends.

Only two paragraphs in and already I wanted to burn this charming individual (a euphemism for ‘dickless little twat’) at the stake on a bonfire made out of copies of the Catholic Herald.

He almost lost me at that point, before I’d even got to the crux of the article, but I persevered. Though the rest was not openly mocking, it was patronising in tone, which detracted greatly from what should have been a positive message about a wonderful charity.

Of course, he was called out on Twitter. His response? Name-calling. We were ‘despicable’, ‘vile’, ‘vicious’, and ‘off the scale in nastiness’. He claimed it was a planned strategy to ‘provoke the language police’. What did he imagine he would achieve by doing that? At best it was immature and ill-conceived, at worst, wantonly mischievous. Potentially he stood to cause more harm than good to the charity whose profile he was supposed to raise. He called in friends, or perhaps just twitter contacts, to insult and intimidate some tweeters into retracting and apologising. When no one did, he threw his toys out of the pram, and announced in big shouty capitals ‘YOU’RE BLOCKED’.

It would be good form here for me to include a link to the article so that you can read it and make up your own mind, but I don’t want to give his poisonous voice any more of an airing. For every person reading that article who can see through his attitude, there will be more than one who assumes that because he is a professional journalist writing in a publication that purports to uphold Christian values, that his perception of learning disability is acceptable. It is not. If you really want to read it, you can find it on The Catholic Herald’s page or website, under the title ‘Charity without the Guilt Trip’.

I would urge you instead to go directly to the website of Team Domenica – the charity he was writing about – http://www.teamdomenica.com, where you can find out all about their enrichment programme for young adults with learning disabilities, in their own words. They truly understand the abilities and potential our young people have, and what an asset they can be in the workplace if given a chance.

Fiction:

For leisure, pleasure, and a healthy bit of escapism, I have been reading the novel White Teeth by Zadie Smith. It is fabulously well-written and absorbing, so much so that it actually didn’t provide the escapism I was hoping for; instead, it tipped me straight back into a former, less happy, life.

I didn’t realise until after I bought it that it’s set in the very area of North London where I lived for a time when I was in my late teens/early twenties. I found many echoes of my own experiences in the early chapters of the book, dealing as they do with relationships that straddle racial, cultural, and generational divides. In my own life, I viewed the breakdown of my (then) relationship as an escape. It will be interesting to note, as I read on, whether I will begin to see a different viewpoint: both of my own story, and that of the novel.

30/11/16 Giving Up.

Today I have given up any pretence at all that I am some kind of Alpha Mummy, or that I can do this …

… and bought a ready-made costume for Freddie to wear in the school Christmas concert. 

He is following in his brother’s footsteps, and playing a Wise Man/King. I am not the sort of mother whose children usually get given a part in the nativity, but as it happened, big brother H was the only child in his nursery class who could actually say ‘Frankincense’ that year (there’s a reason for the ‘Stoke Speaks Out scheme’). Big sister never got a part, because she went to Catholic school, and although we’re Catholic, we’re not Catholic enough (only three children,you see). 

In respect of the fact that we were at least trying, she was once granted the opportunity to stand on the edge of the ‘stage’ as ‘dressing’ wearing  a white plastic pedal-bin liner trimmed with tinsel and a pipe-cleaner on her head; if you were one of the poor sods who were among the small percentage of other faiths the schools were obliged to, you could only ever hope to sit cross-legged in the gritty dust at the edge of the hall, and join in with the songs.

Not that I got to see her ‘performance’. The front row of benches was, by tacit consent, the sole preserve of what I used to call ‘The Mum Mafia’. Every year I swore that the next year I would write ‘reserved’ on a bunch of Tena pads, sneak into the hall before anyone else hit there and staple them to front seats (because with upwards of six or seven children apiece continence probably wasn’t a virtue any of them possessed in any sense of the word). I did, however, have the privilege some years later, of being sat among a bunch of ‘Stage Coach’ parents at a County music competition the year my daughter’s school choir won. The looks on their faces when they realised that they’d paid all those fees for the best Performing Arts education, and their kids had lost to a volunteer High school choir who rehearsed in their lunch break; you could almost see the money draining out of their hands along with the colour from their faces.

Anyway, I digress. 

By the time you’ve sourced some suitably ‘kingly’ material, plus bits of sparkly self-adhesive tat to jazz up a cardboard crown (which is totally wrong anyway, because everyone* knows the three kings were probably actually astronomers from the school at Babylon, tut!), you end up spending more than a ready-made one costs. And that’s without taking into account the stress of dragging out your old sewing machine, blowing off the dust to find you never replaced the needle you broke last time, then discovering that the lovely,shiny fabric you spent a fortune on is too slippery to machine-sew anyway. And then you end up spending so much time making it that by the time you’ve finished it, the little darling/bu***r has selfishly grown and it doesn’t fit.


So I bought one. So there. Right, that’s that job done – pass us an Asda mince pie, I’ve earned it. That’s right, a ready-made one. Omega Mummy and proud 😉

Is Freddie Anxious: A Firefly Garden post.

It is true to say that the families of children face greater challenges than the average, but those challenges vary widely between one family and the next. We have been very lucky with Freddie’s physical health so far (touch wood). When it comes to behaviour, however, it’s a different can of worms – Freddie can be very challenging. Some would say that’s down to bad parenting rather than Down’s, but I’ve not parented Freddie any differently than my older children who have always been very well behaved (by the time you get to your third, your overall parenting style is pretty well established). After 14 months on a waiting list we now have some input from the CAMHS LD team. It’s great to have their support, but I’m finding that many of the techniques they recommend are things I’m already doing. Here’s a post I wrote recently for Firefly Community about Freddie’s behaviour and how I might be able to get a handle on tackling it:http://community.fireflyfriends.com/blog/article/is-freddie-anxious