Today a widespread group of SEND bloggers are joining together with a series of blog posts to try and raise awareness of the Changing Places campaign. We thought by combining our voices on the same day we might be able to cut through the white noise of life and tell you about the challenges of getting out and about in public places with our disabled children. Also to let you know what you can do to help.
This is my contribution, which comes with a heavy spoof warning (before I get lynched by the Dornan fan club mobs).
I’m not sure whether you know this about me but I am quite good mates with Millie and Jamie Dornan. Have been for years but I like to respect their privacy. I am not one for bragging really about my celebrity connections.
I met Amelia when her mum was Debbie Gordon in Brookside, the set of which is around the corner from my family home. I used to give her backies on my BMX and we’ve been massive pals since.
Anyway, we were all out together the other week. She persuaded us all to come to this charity golf thing in the middle of nowhere that Jamie was involved in. Told us to bring the kids as the charity wanted loads of family-style shots.
Turns out she got me there under false pretences actually – I thought she’d have all manner of nannies and servants now Jamie had hit the big time, but there was just the one au pair and she was spending all her time on Candy Crush scowling at us. Also, it seemed that we were the only fools that had actually brought our kids to this family orientated day.
Then all the men buggered off to play golf.
‘What the hell Millie?’ I asked her as we sat in the corner of the lavish marquee, shunned by the cool crowd for having small people who could leave stains on expensive clothes. All the other wives and girlfriends were arranged artfully by the bar.
‘I know, I know,’ she said as she tried to give the baby a bottle and stop her toddler Dulcie putting licked Smarties down her top at the same time. ‘He wants people to think it hasn’t all gone to his head and that it will look good if we are looking after the kids ourselves. He thinks all his Belfast mates will take the mick otherwise.’
‘But he has just effed off to the golf course.’ I think I’d have come alone if I’d known.
‘Tell me about it. We can still get tanked though. Pour us another glass of that champagne. This is my last day of drinking and then I’ve got to try to stick to my diet. All those 50 Shades of Grey premieres are coming up again.’
‘I thought you refused to go after last time.’ She’d had a terrible time. Too many people who didn’t have a firm grip on reality (*cough*) thought that she was splitting up the film characters Christian and Anastasia by her mere existence. They were well brutal.
‘I did. But then Jamie was all worried that people would think he was running off with a fictional book character again. To tell you the truth I just can’t even be bothered with the getting ready side – all the mega prep – I’d rather stay in watching Made in Chelsea in my pyjamas.’
Finally, all the men then came back in. Our two fools pretended not to see us and actually settled in with their mates with a pint. We’d put paid to those shenanigans though by telling the kids they had sweets for them then we hot-footed it to the other side of the bar before they could say anything.
It was all short-lived as ten minutes later I could see Jamie walking towards her holding the baby at arm’s length with a look of disgust on his face like the offending smell was actually Millie’s fault.
‘Oh you are kidding me,’ she said as he got closer. ‘Give her to the au pair at least.’
‘I can’t she’s flicking through Instagram with Dulcie and the golf people want us for pictures in a minute. Listen if you do this one Mills’, he’d pleaded. ‘I’ll do the next two…three… okay, four.’
She rolled her eyes as she took the baby from him reluctantly, but a four nappy exchange was a very good deal. I thought I’d just go with her. Watching someone else change their child was preferable to going back and getting dragged into any family based activity. At least this way we could carry on with our gossip.
However, when we got into the marquee’s make-shift toilets we realised that there was no changing table for the baby. Something sadly I was all too familiar with. I hastened a guess this was her first encounter with a situation like this though.
‘Have you got a mat in your bag Millie? You’ll have to put her on the floor.’
‘Oh, no way, God knows what’s on the floor. Oh this is so disgusting – there are splashes of pee there – why don’t people aim straight?’ she said in horror, but then she admitted defeat realising there was no other way and put the mat out in the driest area. Then she opened the bag, swearing under her breath, as she realised she’d left the spare clothes in the car and desperately needed a clean vest.
‘Don’t worry. I’ll get Jamie to get them.’ I said. He was all nods when I’d told him but then as I was heading back I saw he still hadn’t moved and was still telling some yarn or another.
‘FFS Jamie, get the change of clothes out of the car. She’s waiting for it.’
‘Tell her I’m coming. I was just telling Cillian about what it felt like to fly the helicopter across Seattle.’
‘No one cares Jamie. You didn’t even fly it. You sat in the front pretending. Get over it man. She needs that stuff now.’
Jeez. I walked back to the toilets and Millie was kneeling on the floor lifting the baby’s legs and trying to minimise the damage. ‘Right that’s it – this is officially hell – I have wee on my knee. Why do they always do this when you are out?’
‘Tell me about it – it is worse with Gabe – there is never anywhere to change him and he’s now too big for the changing tables. As he can’t stand we always have to lie him on the horrible floors. It is grim of grimville. One of the worst things about having a disabled child.’
‘Oh, I can imagine. This is bad enough. Did you speak to Colin about it at the party the other day?’
Colin Farrell is another mate of mine. I’ve been trying to get him involved in this disability campaign called Changing Places, which was aiming to get more adult-sized changing benches and a hoists in more UK toilets. There was barely any anywhere at the moment – currently 900 appropriate toilets in the UK for around 250,000 people who needed them. He got this sort of thing having a son with Angelman syndrome himself.
‘He said he would see what he could do, but the problem was that no one really gives a crap about toilets and even he’d struggle to get anyone interested.’
‘Literally,’ Millie giggled and I joined in. Although you know it actually wasn’t that funny most days. People just didn’t seem to get it unless they have faced it once in a while themselves – like just now.
She must have noticed I was feeling a bit down as she’d then turned the subject right back to the campaign again. She was a good mate like that. ‘On that note, Jamie’s dad said he might be able to help with it all – get some of his doctor mates involved.’
‘Really? We need more professionals like that to help. Good old Professor Jim. And he is a proper sort as well.’
‘Eugh, come on that’s my father-in-law you are talking about. But he is a sucker for the kids’ charities. Where the hell is Jamie? Bet he is telling everyone about LA again.’
‘Ah man, I don’t want you to go. Who will I What’s App during Real Housewives of Cheshire while you are away? Can’t you just tell him he’s had his moment in the sun? He should just try to get a job closer to home now. Maybe in a soap or something – I bet they are looking for someone to play the new Peter Barlow in Corrie. That would be a job for life. Then we could meet at the Trafford Centre – how cool would that be.’ Then it had hit me like a tonne of bricks. ‘OMG Millie – you could be in the Real Housewives…’
‘We could become mates with Dawn Ward…’
There was then a knock at the door so I went and opened it. It was Jamie (aka Peter Barlow). I’d motioned for him to come in.
He was frowning and rubbing his beard. ‘Why are you changing her on the floor Amelia. Come on, that’s gross. Can’t you change her on the chairs outside at least.’
‘What and get photographed bent doing a nappy change that all your fans will put up on the internet next to one of you with that Dakota and her slashed-to-the-effing-navel dress. Not bloody likely.’
‘You know you are my one and only. I’m more in love with you now than the day that we got married.’
Millie and I both looked at each other and burst out laughing. They were so transparent. She didn’t even dignify this with a response but I was of course intrigued.
‘She’s in the middle of doing a nappy, Jamie. Give it a rest mate. Just spit it out – what do you want to do?’
‘Well, all the lads are thinking of nipping up the road to the pub to catch the second half of the Liverpool and Manchester United game. Can I go? Ant, Dec and Robbie are going as well. I’m hoping to persuade my new mate Cillian too, but he says he likes to be in bed by 10 these days.’
‘Can you take Dulcie at least?’ Millie asked stressed as she realised she’d put the baby’s vest on backwards. ‘Oh God, this is gross – I’m going to vomit. How you do this all the time with Gabe I don’t know?’
‘I know and this is a palace compared to some of the floors we have to use. Plus he wiggles off the mat and wants to flick the toilet seat. It is so horrible.’
‘Jamie, here, take over. Put that muscular back of yours to good use,’ she’d said standing and stretching. ‘That really hurts your back as well, doesn’t it? You need to use this fame babe before you hit forty to help her out. Can you wear a tee-shirt with the campaign hashtag on or something when you are next on the Graham Norton show?’
‘Yeah okay, I’ll see what I can do,’ he then said putting the baby grow on inside out. I think none of us cared at this stage. ‘It is a shame that E L James didn’t go for my idea in the last movie. I thought me and Dakota could just be about to do it in a public toilet but then get into a conversation about how rubbish the facilities were for older disabled children who couldn’t use a changing table anymore. Like a bit of the old intellectual foreplay talk.’
‘I know…’ I said. That would have made really epic and interesting cinema.
‘She was interested in the hoist part though for some reason. I told her that was 50 shades of inappropriate. Ha, get it. Listen, don’t worry, we’ll think of something. I’ll ask the lads… you know… in the pub…’ He then handed the baby over, and was heading for the door sensing, but not quite believing, freedom was coming.
‘Jamie’, she called after him. ‘It is still your turn to get up tomorrow. Au pair doesn’t start till nine. As long as you realise that.’
‘As if you would let me forget,’ he had muttered under his breath as he left with a few other words I couldn’t quite catch.
‘You should take a picture of him getting up at 5 am with the girls with his hangover face – that will scare all the women that spend all day hash-tagging him.’
‘I know. I should. Why would anyone spend time doing google image searches of anyone, unless it is Poldark of course? Jamie now has billions of these little photo montage-type things on YouTube that fans put up that get loads of views too. I mean just who is watching them?’
This had me astounded. ‘I wonder who would do that for small parts of their working day when they were taking a little innocent coffee break. That is craziness.’
She had the baby all sorted now and we went back out to the bar, putting her in the car seat. ‘That’s not the worst – there are actually people who make up stories pretending that they know us.’
‘Seriously. Who does that? That is a special kind of tragic.’
I am very sorry to inform you (and believe me I am beyond gutted myself) that the only true fact in this story is that there is hardly any provision anywhere to change the tens of thousands of disabled child who have become too heavy for a conventional baby change unit.
We, and so many families like us, face a lifetime of changing our child on usually stinky germ-ridden toilet floors with no sign of Jamie Dornan to natter to as we do it.
It is frankly at times soul destroying.
I know it is not the most interesting campaign in the world, but access to better facilities would make such a massive difference to thousands of families likes ours. These little things are often the tipping point in a life that is littered with a multitude of other battles.
Alas, we don’t have Millie and Jamie Dornan or his dad Professor Jim ‘the sort’ or even Colin Farrell, but we do have you and you can help.
Can you please do me the biggest favour and sign the petition and share the post (or one of the more sensible posts under the hashtag we are using today #phantomloos) so that you can get your mates to sign the petition too.
Small things can and do lead to big things.
No disabled child like this little dot should have to be changed on a dirty floor – let’s give them the dignity they deserve.
P.S If any of Amelia and Jamie Dornan’s people stumble on this, please don’t sue. I promise from now on I’ll rein in the stalking. Come on, there is no need for that restraining order….
For more information go to http://www.changing-places.org
#phantomloos #changingplaces #spacetochange #benchandhoist