23/11/16 Lets Pretend

It was Freddie’s birthday on Wednesday. The anniversary of the day he was first placed in my arms; of the day we were told he has Down’s Syndrome. 

We gathered in the living room to watch him open his presents. I was so engrossed in watching his developing imaginative, or ‘pretend’ play skills, as he hatched the baby dinosaurs from his Playmobil set out of their eggs and made them squeak to the mummy dinosaur, that I lost track of time. Suddenly it was ten past eight and we haven’t even had breakfast; the school minibus comes for him just after half past.

You can’t rush Freddie. It takes a fair amount of energy and patience to coax him, step by step, through his morning routine. Though the time between getting up and waving him off on the bus is hectic, hand on heart I cannot say it is any more stressful than the one-and-a-half-hour commute to work I used to do when I lived down in that fancy London.

The easiest thing to do was to keep him off school. I have the luxury of being able to do that because I’m a stay-at-home mum. I’m not going to pretend that it’s harder than going out to work, because, for me, it isn’t – it was my choice, the life I wanted, warts and all.

My mother always advised me against having children as, she said, “there’s nothing for them in this world”. I don’t think she believed that, I suspect she just didn’t enjoy motherhood. I have friends who chose not to have children, but that is because they like a certain lifestyle that would not be possible with kids in tow. They do not dress that decision up as a selfless sacrifice made to spare any potential future child from a grim life in a hard, cruel world. They know they have a right to choose whether or not to bear children, and under what circumstances, and they take ownership of their decision, knowing that society questions childlessness by choice, and often condemns it as unnatural.

This week I have read two articles in which women have justified their recent decision to terminate a baby with Down’s Syndrome because “it was best for the baby”, in order to spare it from a life of constant pain and suffering. Down’s Syndrome does not cause constant pain and suffering, and, these days, in a developed nation, a little googling will soon bring that information to your attention. Now, those women do have a right to decide whether or not to bear children and under what circumstances, but let’s be honest about this, they made that decision in order to spare themselves from a life they didn’t want. Why shift the onus for their decision onto the faulty child for forcing them to make this ‘heartrending’ choice by being disabled? Own your decision, ladies. If you don’t want a child with Down’s Syndrome, or feel that you, personally, could not cope with one, say so. But don’t pretend you’ve done it to spare the child, because, in the case of Down’s* all you’ve done is spare them days like this:


All you’ve spared their siblings is moments like this:


In claiming that you ‘immersed your child in love as it died’ you insult the midwife who called me lucky, and sobbed over my child because her boy with Down’s had been stillborn. You insult all parents who have ever wrapped their born-sleeping child in the blanket they bought to take him home in, and gave one first-and-last -kiss that had to encompass a whole lifetime of love that’d they’d never get to give. Your cowardly lie insults every woman who has been honest about her reasons for terminating a pregnancy, and faced the judgement of others.

Nobody is suggesting s woman should be forced to bear a child she doesn’t want or can’t cope with, but lets not dress this up as an act of selfless love when, in the case of Down’s Syndrome, it clearly isn’t.

*Just to be clear, I am talking here only about Down’s Syndrome, and not about any other condition for which a woman might seek a termination, but about which I have no knowledge or experience.

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

19/11/16 Another Shitty Weekend in Paradise.

It’s  common knowledge what life is like for the families of children with Down’s Syndrome – just ask anyone. Seriously anyone – some TV personality who doesn’t have a child with Down’s, some religious leader who believes all life is sacred so long as it’s perfect, some actress paid to pout and pose, which qualifies you to pontificate on anything, apparently, or a random old lady who still thinks the ‘M’ word is the correct name for the condition. But I thought I’d share the gory details of my weekend with you, anyway.

This weekend we have been suffering

… from a big mess. Captain Chaos strikes again. Oh well, at least he’s reading. Today’s recital started with ‘The Hat’ at 6.30am. No microphone or alarm clock required.

… and a lack of tea. Or Daddy, at least, is suffering from a lack of tea – because he took his eyes off his cuppa for a minute and Freddie half-inched it. I’m safe: I drink coffee, and Freddie doesn’t like that!

And yesterday we were just about coping …

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… With making breakfast. Until Mummy heard the clattering and came down to interfere.

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I mean, what kind of a life is it for a boy?

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… when he’s got nothing better to do on a Sunday than play with ‘babyish’ toys (worse still, this is not just Duplo, it’s hand-me-down Duplo – some of it must be eighteen years old). Here’s a handy little tip I discovered with my older children: once you’ve thrown away the original box it came in, the age range printed on it no longer applies (which is just as well, or somebody would have to tell Daddy that it’s not meant for 48 year-olds).

Of course, there are no pictures here of my above-mentioned older children, because in order to cope with the trauma of having their childhoods completely trashed by having a sibling with Down’s, one was forced to get good grades so he could escape to university to study Linguistics and beer, and the other was lured into a life of adventure in the Girl Guides, and spent the weekend on a First Aid course at the local scout hut, quite a big deal for a young carer, who has previously never been able to venture further from home than Canada.

So yes, it was just another shitty weekend in paradise. I have to say that: because we, the parents of children with Down’s Syndrome, are duty-bound to uphold the stereotype, apparently; because to hold up your hands and say ‘actually, my life is largely happy, and positive, and not at all shitty’, is heresy.

You’d best burn me at the stake, then, before I spread that dangerous idea any further.

Come on baby, light my fire…

 

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Preparing for the ‘Flu-stive’ Season: A Firefly Community Post.

‘Don’t you get bored sitting at home all day, now Freddie’s at school?’ I’m sick of hearing that one. 

‘No’, is the answer, ‘I don’t allow myself to get bored’. 

One of the things I do is to write content for other websites. I also write fiction. Sometimes I even earn money from it. This way, whatever happens, I’m free to fit in around my family’s needs. It wouldn’t be everyone’s cup of tea, but it works for us. Here’s a piece I wrote for the Firefly Community website:

http://www.facebook.com/l.php?u=http%3A%2F%2Fcommunity.fireflyfriends.com%2Fblog%2Farticle%2Fpreparing-for-the-flu-stive-season&h=WAQFQGuao&s=1&enc=AZO2wqPx6utq6G6EobplpbPcFOkfpVxtfoWvtjjHmxHbjDm6jiV6OzNcWH2eyrplcAENZae2wQsfBR-bIjnnRiJIddP6AvYgXpShMeeKHh5jJA

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’:

https://kerryfender.wordpress.com/2016/09/28/1776/

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.’

11/11/16 Usurped!

Daddy has a new love. And it all happenend because of Facebook.

Daddy loves his cars. As I write this he’s sitting on the sofa next to me, berating the TV because the engine noise doesn’t match the car on the screen. It’s just sheer carelessness on the part of the programme-makers.

Everybody knows what a straight six sounds like’ (that would be everybody except me, then).

He used to drive an old Alfa Romeo, which was beautiful, but needed a major component replacing nearly every month. A mistress would’ve been cheaper to run. When Freddie came along, our immediate needs included both (a) a new house, and (b) a new car. He turned out to be the most expensive surprise 40th birthday present ever (I know Daddy said at my birthday party that he wanted to give me something really special, but I don’t think he was planning to spend quite that much). Anyway, instead of trading the Apha in for a mistress, he traded it for a people carrier that drove like a dented shopping trolley, and had all the build quality of a PoundLand umbrella. He wasn’t sorry when it got rear-ended in Wales – it was a complete write off – and to celebrate he bought a second-hand Jag.

He might as well have taken a mistress because he was absolutely smitten, infatuated, obsessed. He bought it presents, like a leather gaiter for the gear-stick, and gave it’s bodywork  a rub-down every weekend. He joined a Facebook group for Jaguar owners, even though he hates Facebook. And that’s where he found out about the Jaguar Art of Performance Tour. 

And that’s what brought them together.

Daddy and I don’t get a lot of time to ourselves, to be … whatever our names are … instead of just Mum and Dad.  Babysitters are thin on the ground – our parents are getting on in years, Daddy’s brother and sister distance away, and our friends also have elderly parents as well as children, and other commitments, so we don’t like to ask. But by skiving off on a school day it means that my mum only has to endure Freddie’s onslaught for a couple of hours at most after home time, when some of his energy has been dissipated. Don’t get me wrong, Nan and Grandad love having him, but he is a little sod. Typical third child.

So, when Daddy spotted that the Art of Performance Tour was coming to Chalmondeley Castle, on a Friday, we jumped at the chance to spend some quality time together. Or rather , Daddy jumped at the chance of trying out the new F-Pace, and I went along for the free lunch, and a chance to sit in the front of the car a change, instead of in the back making sure Freddie doesn’t climb out of his seat. Once upon a time I might have suggested a detour through the woods on the way home, but those days are long gone, because, of course, the parents of disabled children can’t possibly do that sort of thing, everybody knows that ‘Special Needs mums’ are all dowdy sexless lumps who live in shabby houses that smell of pee (Irony Alert).

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Chalmondeley  Castle – actually a stately home with serrated edges.

And Chalmondeley Castle is where they met. 

He first caught a glimpse of her on the car park as we arrived, flaunting herself in venomous red, the slut. On reflection, booking ourselves onto the afternoon session was a mistake, because it meant we had eaten shortly before being bucketed around the section of the World Rally Championship course that runs through the Chalmondeley Estate, at speeds that wouldn’t be legal on the highway.

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There is such a thing as a free lunch, but it’s served in a saucepan (!)

The sedate ten-minute test drive we were expecting turned out to be a good hour’s drive on a route pre-programmed into the sat-nav. But the F-Pace that Daddy had been so excited about had suddenly lost its appeal; such was Daddy’s pre-occupation with the little madam he’d seen on the car park that he didn’t realise he wasn’t following the presecribed route until he spotted that the road signs had all ‘turned bisexual’ because we’d strayed over the border into Wales. He was anxious to get back to the estate, to grab the chance to get better aquainted  before the event finished.

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The ‘bisexual’ road signs were the first clue that we were lost.


And he certainly did that, and he made me share the experience. Topless in November, she was ‘taut’. She ‘went like the clappers’, and ‘pulled like a train’, and when he properly got her going she rewarded him with the most arousing low,throaty, grunting noise. She was even better ‘in the flesh’ than he had been anticipating.

Because it turns out he knew all along that she was going to be there as well, and that’s why he wanted me to go with him, so that I could meet her too, and experience what it was about her that had caused him to rediscover passion: so that I would really understand his motivation. He wanted me to hear for myself the noise that got him so worked up. Oh, the cruelty! Obviously, there is no way I can ever compete.

We did take a detour on the way home, but only to the chip shop.

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The F-Type that has stolen my husband – the dirty bitch.