Tuesday, 22 November 2016


“You’re Tracy, aren’t you?” my daughter asked.

Tracy Barlow - or rather Kate Ford, the actress who plays her in Coronation Street, nodded in reply. “Yes, I am. It’s very nice to meet you.”

My girl nodded back. “Yes. You look like Tracy.”

Kate laughed. “I should hope so!” (Although I couldn’t help thinking that Kate did originally take over the part from another teenage actress who went upstairs in a strop and came downstairs as an entirely different person, as people sometimes do in soaps).

Meeting Kate/Tracy was a high point in a day of stratospheric high points, as me and my awestruck girl went on a tour of the Coronation Street studios and set. 

It's not normally open to the public, but we had managed to wangle a personal VIP tour (by lucky virtue of a relative being friends with someone who’s connected to The Street and who pulled a few strings, or shook a few cobbles, or whatever the Weatherfield saying is for getting us through a normally firmly-closed door.

We were welcomed by ‘duty officer’ David - who proved himself to be an avuncular, astute, and wickedly funny tour guide.

He patiently explained how some of shops and homes were just fronts, with their insides in the indoor studios. (This whole issue properly boggled my daughter’s mind, despite seeing the physical evidence right before her eyes). He took my girl into Underworld, where she pretended to sew a pair of knickers. He watched, amused, as she studied the menu in Prima Doner (checking for spicy options, of course). She was fascinated by the fake food in the counter display fridge at Roy’s Rolls (are you spotting a Prader-Willi Syndrome pattern, here?). He let her ‘pull a pint’ in The Rovers Return. He showed her the ‘lucky’ mascot stuffed toy cat that has nestled in amongst the crisp boxes for years. And he told her of the superstition that actors have not to go through a certain pub door - because legend has it that their Corrie street career will then be over.

In amongst the perfectly-judged, straightforward explanations to my girl, David shared some more subtle insights with me - leaving me flabbergasted at the care, attention, and astonishing levels of detail in the set design and dressing, where colours, textures, and comic or poignant background details are painstakingly matched not only to the characters, but to the tone of particular scenes and storylines.

At one stage we peeped our heads round a back alley before realising filming was going on further along the street. We had to jump back out of sight, shushing and giggling at the idea of our shocked little faces appearing in the background of a dramatic scene. It would have been the best ever game of televised Where’s Wally, though, wouldn’t it?

We even got to lurk amongst the crew, watching split screen monitors show an actual studio scene being filmed in front of us. The acting seemed nondescript, flat, and distinctly underwhelming, but when we saw the playback on the screen just seconds later, the drama was transformed, with the close-up camerawork revealed powerful emotions, delicately and skilfully played. It was a revelation. (I’m not sure that my girl appreciated it in quite the same way, but by ’eck, she was mesmerised at seeing something ‘instantly’ transported to the ‘telly’). She assumed it would be on tomorrow night’s edition, so David had a little bit of explaining to do about how this was a scene scheduled for transmission in January next year. I’m not sure she quite got to grips with the time travel aspects of this, and I have a feeling this may be a subject she will wish to discuss with me, ad bleedin’ infinitum. It may ultimately drive me to drink. Newton & Ridley Best Bitter, probably.

We were there for an hour and a half. My daughter smiled for all of it, and for most of the four hour car journey home, as she clutched her visitor’s badge, and her ‘goodies’ from David: a Newton & Ridley beermat, a Nick’s Bistro serviette, and a Corrie key ring. 

“I loved it, Mum,” she said. “I know,” I told her. It was obvious to me and everyone on set who had seen her poodling about today, wringing her hands excitedly. It had been written all over her beaming face.

Song is Skids - TV Stars. All together now, "ALBERT TATLOCK!"

Related Post: Samples

Sunday, 13 November 2016


When you’re 18 years old and you have special needs there are many things you might be worried about. 

What new health issues will you have? What will happen to you when you finish school? Will you be able to cope with a college environment? What services and opportunities will be available to you as an adult? 

Even if you can’t articulate or fully understand these looming matters, you know that Big Stuff is there. Doing what Big Stuff does. Loom, mainly. 

So what is it you have a complete, three hour-long meltdown about?

Ed Balls on Strictly Come Dancing, that’s what.

Sunday morning in our household was spent trying to douse my daughter’s flaming fire of grief and disbelief at the fact that former MP Ed Balls hasn’t yet been voted out of Strictly Come Dancing. 

Having caught up with last night’s show on the iPlayer, and cogitated for a while, my girl became strictly stricken with the possibility that the bollockly-monikered prancing politician could be VOTED IN when there were MUCH BETTER DANCERS who might be VOTED OUT. She cried real tears. She properly perseverated. (the repetitive repeating of repetitive repeating). We were dealing with a full-on, sequin shirt-inspired, wobbly wipeout.

Eventually I delegated the issue. I sent my husband off with the meltydown meltygirl (and her - for once - speechless brother) to visit Nanna (who actually watches the damn programme, unlike me). And I put my trainers on, crammed my cleavage into my sports bra, and went for a jog, leaving everyone else to deal with the balls-up. Yes, I literally ran away from the problem.

What are looking at me like that for? It bloody worked. Well, it did for me, anyway.

Video is Charles Bradley - Strictly Reserved For You

Monday, 7 November 2016


It’s been a year of hospital trudging, and last week we had two appointments in three days. The first was a look-see, x-ray and pre-op assessment in preparation for my daughter having four wisdom teeth out.

She impressed the doctor (or should that be dentist? Well, I’ll go for Hospital Tooth Guy). “What job do wisdom teeth do? If they don’t have a job, what’s the point of them?” my girl asked. “That’s a very good question,” he replied. He was right, it was (if you ignore the slightly fascist undertones). He told her a little story about how our ancestors had bigger jaws, and she nodded along, happily.

Next up was Wednesday’s Glucagon Stimulation Test. It sounds like a noisy Peel sessions band, but it’s not. It was a pituitary gland test to see how much growth hormone my girl produces naturally. The answer to this, I’m sure, is ‘not enough’, as is common with most other people with Prader-Willi Syndrome. She used to have a daily injection but this was stopped a couple of years ago. I still for the life of me can’t remember quite how I went along with this decision at the time without challenging it. I must have been sleepwalking, or drunk, or something. Although my daughter wasn’t growing any taller, due to her spinal fusion, there is a lot of data to suggest that people with PWS benefit  in other ways from continuing to take GH (it slightly increases muscle tone, for example). So I don’t think it was a good idea to stop, and I’m hoping this week’s test will show she needs to start her daily injections again.

The nurse who oversaw the three hour test was an old friend from the endochrine clinic. She immediately fetched a doctor from another ward to put in the cannula on the back of my daughter’s hand. “I’m not letting the doctor on this ward today do it - your veins are so tiny, we need our Top Man,” she whispered. She was right. Top Man hit it first time.

There then followed an injection to deliberately alter blood sugar levels, to stimulate the release of natural growth hormone. And then some blood samples being drawn. And some more. And more. Blood sugar dipping and rising, and all the time - did I mention? - my girl was fasting. Yes, you got it right - no food from midnight. No breakfast, no morning snack, no juice, no nothing.

When she was beginning to get super antsy about her lack of food, I pulled out my trump card.

“I’ve got something to tell you. A surprise. Something you’re going to get that you’re not expecting!”

“Is it dinner?”

“No, it’s not dinner.”

“What is it, then?”

“Well, your very clever aunty knows someone who knows someone who works on Coronation Street, and guess what - in three weeks’ time, you’re going on a special personal tour of the set!”

She clutched her hands together and closed her eyes in delight. And then, half an hour later, when the nurse gave her permission to eat, a ham sandwich elicited much the same response.

Song is Sam Dees - Child Of The Streets. Disclaimer: contrary to what he says in the first line, her father is not a 'pusherman'. And I am not a 'solicitor' always on the corner, thank you very much. And that bit about the brother possibly ODing? God, I'm beginning to regret picking this song. It's the 'Street' bit I chose it for, OK? Coronation Street. Blimey, have this instead:

Tuesday, 25 October 2016


We sat in A & E for an hour or three.

My daughter had returned from her residential trip with bruised knees where she'd stumbled over on some steps. It was the last day, and she’d got to her feet, reassured staff she was fine, and not mentioned any pain or problems.

It wasn’t until she got in the shower that night, and I saw the angry black and purple circles on her kneecaps, that I realised she might be hurting.

“They’re a bit sore,” she told me, that high pain threshhold thing explaining the seemingly impossibly understatement.

I gave her some painkillers, and she seemed OK, but a few days later, she started walking very stiffly. 

“My back hurts,” she told me. The back that she had an operation on in May to remove metalwork from an earlier spinal fusion. 

I starting mulling it over. When her stiffness seemed to increase, I mulled some more, and tried to reassure myself that she was probably just sore from walking gingerly, overcompensating for her bruised knees. And then on Sunday, when she was struggling to get out of bed, and after I’d mulled enough to turn my blood into a spicy festive wine, I took her along to A & E.

The doctor was satisfied that everything was OK. He gave us a prescription for stronger painkillers, and we returned home. I sneaked in the sneaky bag I’d sneakily stashed in the boot of my car earlier. I nipped upstairs and sneakily unpacked the spare clothes, nightthings, and toothbrushes I’d taken in case something had been really wrong and we’d had to stay in. By the way, I’m crap at being sneaky - my daughter clocked my attempts at subterfuge and I had to explain my workings. Several times.

So half term is turning out to be a restful one for my girl, who’s kind of enjoying her invalid status a little too much. She’s spent most of it sitting on the sofa in a nest of pillows, leafing through TV Choice magazine and catching up with Corrie and Eastenders. 

But I’ve left a phone message for her consultant from the Royal Orthopaedic Hospital at Stanmore though, to see if we can bring her check-up appointment forward. Because, well, you know...mulling.

Oh, and the song is not going to be Mull of Kintyre, you know. I just won’t do it.

Song is Low - To Our Knees

Monday, 17 October 2016


My daughter is on her residential course

I got a missive earlier. Oof. Heart lurch.

And now I’ve just had another one. Phew. Heart soar.

I reckon she liked what she had for tea.

Song is World Party - Put The Message In The Box

I'm doing a swimathon on October 26. Please consider sponsoring me to help raise money for the Prader-Willi Syndrome Association UK. Just Giving details here.

Sunday, 16 October 2016


The rain was pelting down. But she had a sturdy pair of walking boots on and a tough waterproof mac. And a bag with loads of changes of clothes in.

The coach was taking her and 18 other special school students on an NCS (National Citizen Service) residential trip to Staffordshire. It's a David Cameron Big Society thingy (remember that?) which sounds a bit like the Hitler Youth, but I think is more kind of Duke Of Edinburgh-lite. (Dear God, David Cameron, Hitler and Prince Philip in the same sentence, there's an Unholy Trinity if ever I've heard one).

I went for a swim after dropping her off (in readiness for my upcoming Swimathon for the Prader-Willi Syndrome Association UK) and by the time I got out I had four answerphone messages and two texts from her. The lockers must have been echoing to the sound of my ringtone, One Step Beyond. Had I packed her retainers? The answer she needed to hear was, thankfully, yes.

I later got a call from the school's Acting Head. It had transpired that some kind of double booking issue meant that they weren't going to the venue they had planned, and in fact had ended up going to somewhere in Kent instead. Quite how the school staff managed to get 19 kids with special needs and anxiety issues to take that in their stride, I don’t know. But, apparently, they did. 

So she’s there, and by now she’ll be tucked up in bed, fast asleep and knackered, and she’ll be doing all sorts of team bonding, independence skill-improving things over the next two days before returning home on Tuesday. Probably with a bag full of someone else’s clothes, hair matted with shampoo she’s not managed to wash out properly, and ready to sleep for a week.

Good luck, my girl.

Video is Madness - One Step Beyond
Please consider sponsoring me to help raise money for the Prader-Willi Syndrome Association UK. Just Giving details here.

Monday, 10 October 2016


My daughter has Prader-Willi Syndrome (PWS), a rare and complicated chromosome disorder. So on Wednesday October 26, I will be front-crawling my way up and down my local swimming pool as part of the Rule The Pool half term swimathon - raising money for the PWSA UK Association. I'm going to see how many lengths I can manage before my legs go too wobbly. Oh, and for anyone expressing the most obvious concern - yes, I will be allowed to get out of the pool for wee breaks. 
Why? Well, I imagine I'll need a wee. Oh, I see, why am I doing the swimathon? Well, apart from looking mighty fine in goggles (see picture), I want to give back something to the PWSA UK. Through every stage of my girl's life, the association has been there to help us with support, advice, and information.
If you've read this blog before, then you'll be pretty familiar with the weird and not always wonderful world of PWS. It affects the part of the brain which controls appetite, growth, and sexual development. Although too weak to feed as a baby, children with PWS grow to have an insatiable appetite, and never physically feel full up. But because their bodies can't convert fat to muscle efficiently, they have to be on a strict diet, for life. If their food intake isn't controlled, they will suffer from life-threatening obesity. People with PWS are of small stature, have some form of learning disability, are unable to have children, and are unlikely ever to be able to live an independent life. Oh, and by the way, there's no cure.
That's the bad news. The good news is that nowadays, thanks to a better understanding of the condition - and to the work of dedicated organisations like PWSA UK -  life in a PWS family isn't just about what the person can't do, it's about what they CAN do. People with Prader-Willi can achieve amazing things, and lead happy and fulfilling lives. Did I mention they can be really funny, too?
Check out the PWSA UK website to learn more about the great work the association does. You can also read previous entries on this blog for a warts and all, off-the-wall account of what it's like to live in a PWS family.
That's the who, what, where, and why. 
Now I'm asking you to do something. Fire up Paypal or get your credit card out and donate. Whatever you can spare - no amount is too small! Do The Gift Aid thing, too, if you can. JustGiving will send your money directly to the PWSA UK. 
Now, I'm off to sniff some chlorine and reinforce my cozzie gussett.
Song is Sly & The Family Stone - I Just Learned To Swim