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I’m on the Firefly Community Website today, considering why so many parents feel defensive when meeting with professionals:
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.
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:
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.
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).
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.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.
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.
This blog needs to change. I have been thinking a lot lately about what the purpose of this blog is. What exactly am I trying to do? What, realistically, can I do?
This bout of introspection has been prompted, in no small part, by the … backlash … from within the Down’s Syndrome community following the World Without Down’s Syndrome documentary, from people who do not see their experiences represented by those of us who share a positive view of life with DS. They tore down what they called our ‘poster boys’ (and girls) and shredded them with the words ‘they’re not all like that’, and dismissed the details of our lives as sugar-coated fantasy. While I understand that some people, some families, face greater challenges than others, that they feel ignored or forgotten if they do not see their reality represented, and that in some cases this may bring buried insecurities rising to the surface, I really resent being accused of being a liar by people who have never met me, and don’t know the first thing about me, my outlook, or my circumstances.
The truth is that just as our loved ones with Down’s Syndrome are individuals with different challenges, abilities, and personalities, so too parents are individuals with different backgrounds, abilities and tolerances. Each family is a collection of unique individuals living in endless different combinations of circumstance. Each has its own dynamic. We can each only tell our own story, but together each of us presents one little piece of the jigsaw-puzzle picture of life with Down’s Syndrome. Each piece of the puzzle is equally valid.
And that’s the angle I’m coming from now – I cannot tell anyone what it is like to have Down’s Syndrome, because I don’t have it. I can only tell the world what it is like to be the mother of someone with DS, or what it is like for me, at least. What this blog needs is an authentic voice, and an authentic viewpoint – mine: because my story is the only one I’m qualified to tell.
So I have decided to shift the focus of the blog somewhat, and to make it my ‘diary’, in other words, the diary of a ‘Down’s Syndrome’ mum (for want of a better phrase). Of course, the fact that my son has Down’s Syndrome is not a fact that exists in isolation; it exists within the context of my family, and my life, which (surprise, surprise) has not been completely swallowed up by my child’s needs. It will be the story of our life together as a family. Freddie will still play a huge part in the blog, of course, as he is a huge part of the family, and, being the most vulnerable member, is held securely at the heart of it.
I tend to be quite outspoken, maybe even a little sarcastic, and I do like to get up on my soapbox and rant, but hopefully, if readers can detect a genuine and particular ‘voice’ behind the blog, they will be less inclined to dismiss it as rose-tinted fibs.
I’m also a ‘stay-at-home mum’ (an often misunderstood, and sometimes maligned, creature), and so by also including this aspect of life in my blog, I hope I can call myself a ‘mummy blogger’, as well as a ‘Down’s Syndrome’ blogger, or a ‘SEN’ blogger, and maybe reach an audience beyond just the Down’s Syndrome community, where I’m preaching to the converted, so to speak (or annoying them with my obviously fake happiness and positivity).
What do you think?
‘I know, let’s nail a small incendiary device to the fence, just underneath next door’s overhanging tree. What could go wrong?’
That’s why responsible citizens go to organised public firework displays. We could have done that. Indeed, I often feel something amounting to a duty to do these things, just to prove to the world that we can, to claim our right to join in like ‘ordinary’ families. But we didn’t.
Call us miserable party-poopers, but queueing for the privilege of paying twenty-odd quid to be admitted to a muddy field, to stand around for an hour or so, hustled by bigger or more pushy people, unable to get even so much as a smell of the bonfire waiting for twenty minutes worth of fireworks to start, somehow didn’t hold much appeal. Perhaps it was the strange Yorkshire lurgy* we picked up in Sheffield over half term, but not even the prospect of a damp, droopy hotdog clenched in a stale bun could tempt us.
So, while Freddie was enjoying his usual Saturday visit to his grandparents, we hatched our anarchic plan. We’d spend the entrance fee on a box of fireworks from the supermarket, and a little bag of fuel for the chiminea, and have our own mini-bonfire in the back garden. With proper butchers’ sausages to eat.
How irresponsible of us. But then, everyone knows we must be irresponsible people, or we wouldn’t be in the position we’re in (Irony Alert 🚨. For more about societal attitudes towards those who choose not to test or terminate, see http://community.fireflyfriends.com/blog/article/a-loaded-question).
I had the ear defenders at the ready, and Daddy carefully arranged everything so it it could be seen from the French doors, so if Freddie didn’t like the noise we could hustle him inside where the noise would be further muffled by the double glazing. The grandparents were invited to join us, and chairs arranged round our chiminea ‘bonfire’. Daddy and his trusty ‘one million candle power’ torch were banished to the bottom of the garden with the fireworks, all properly supported to prevent them flying off sideways
The fireworks were great – most were of the ‘fountain’ type, there was lots of fizzing and whooshing, but few loud bangs; and the burned low to the ground which meant Freddie could see them easily. After each one he shouted ‘that one again, Daddy!’
We were done and dusted by 7 o’clock, just in time for a nice, warm bath before bed. As his grandparents were leaving, Freddie said: ‘I enjoyed the fireworks’ very clearly. I think that made the night for them.
Later on, I was snuggled up in Freddie’s bed with him, reading a story when we heard more fireworks in the distance. He jumped up and stuck his head through the curtains. ‘Wow, look…’
Kneeling on the bed, with the warmth of the radiator floating up, we watched as the black sky was sprinkled again and again with multicoloured plumes of light from a municipal display in the distance. I’d had a lovely evening with my family. I was cosy and safe, and I was with my child. The outside world, the past and the future were far away. It was a moment of perfect contentment.
*Yorkshire lurgy – I am reliably informed by Daddy’s Yorkshire relatives that this is God’s way of punishing unbelievers. Not that we don’t believe in God, we just don’t believe Yorkshire is God’s own country. That’s Staffordshire. It explains why we’ve got oatcakes and no one else has (Scottish so-called ‘oatcakes’ are just depressed biscuits).