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.


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.


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

16/11/16 Insoles.

I think these things are going to be the bane of my life.

They are the new orthotic devices we have been waiting for. They are the compromise between the Piedro boots and soft insoles that Freddie’s had so far, and the full-on splints that the Orthpaedic consultant requested, but which the Orthotist who would be responsible for managing his care afterwards said would cause more problems than they solved. He was very thorough in his examination, much more so than the Consultant, and what he said made a lot of sense. Nothing short of surgery will permanently correct Freddie’s foot position, so it’s a case of where do you draw the line between giving no treatment to a little boy who is walking and running around quite happily, enjoying good function and no pain, but who might develop some pain at some point in the future, and giving aggressive treatment which may well slow him down and cause such discomfort that he will become reluctant to walk at all?

Yesterday he only walked from the car to the house in them, but became extremely grumpy and shouty, and sat dismally on the sofa refusing to move until we took them off. 

I tried him with them again when he got home tonight (we have to break them in gradually), but as soon as he saw them he started kicking furiously. I managed to get them on, and the boots, but once again he sat forlornly on the couch refusing to move his feet at all. Myself and Big Sister persuaded him to walk a short distance, but he cried and said it hurt, and he was definitely moving very awkwardly. We have a review appointment in a month, but if he keeps reacting like this I don’t know if I can bear to persevere that long with them. Is it worth making him so miserable for something that’s only a temporary fix?

Here’s a link to the original post about Freddie’s ‘funny feet’:


Problem Solving.

Our CAMHS LD nurse described it as ‘Good problem solving’. 

Daddy always puts music on for Freddie at bath time. Freddie’s favourite is the soundtrack to the BBC Julia Donaldson adaptations (The Gruffalo, Stick Man, etc), which is great, because it’s perfect for ‘winding down’to.

But Freddie sometimes prefers ‘winding up’. 

The other night when Daddy put the music on, Freddie began to sing along. There aren’t any lyrics, so he improvised:

‘Bumholes, bumholes, bumholes, B-u-u-U-M-holes!’

‘Freddie!’ said Daddy, ‘If you keep singing rude words I’ll turn the music off.’

Freddie thought about for a minute, then when the next track came in he sang:

‘Holes, holes, holes,ho-o-o-O-les!’

‘Don’t you see how clever that is?’ said the LD nurse when I told her about it. ‘That’s problem solving. There’s lots of different kinds of intelligence, you know.’