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 Josie 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

Sunday, 9 October 2016


I’m popping into school tomorrow to have a chat with my daughter’s teacher.

After a few week’s of ‘Good day!’ comments in her home/school diary, I got a missive on Friday saying my girl had been ‘difficult and challenging’.

‘Rude to staff, lots of refusing to do things, couldn’t get to the bottom of the difficulties,’ the message read.

That last bit says it all. Because with my girl, you never quite know what’s going on beneath the surface, and finding out the cause of anxiety and difficult behaviour isn’t always easy. Granted, if you burn the dinner, or forget to buy that low-fat ice cream you promised her, it’s pretty obvious. But a lot of time it’s something worrying her that gets suppressed, and when it manifests it’s not always clear where it’s coming from.

Was last weekend’s trip away with her friend a little daunting for her? Is it the upcoming school residential trip causing her to fret? Is it her ongoing anxiety over whether to choose size 3 or size 4 wellies when working on the school farm? Is it her mood disorder stepping up a gear again? Or is she just knackered?

A bit of detective work is in order.

It’s hard to picture, the ‘difficult and challenging’ side, isn’t it? I tend to post positively here, because there’s a heck of a lot of positive things to post. (Look, I’ll even bung you in a picture of her and Prader-Willi Syndrome Best Friend Forever sharing a cheeky champagne and lemonade spritzer at their traditional birthday sleepover on Saturday).

But the PWS road we’re on does have bastarding bumps and potholes along the way. Lets hope me and Mrs D can smooth the path a little tomorrow. And let’s hope it doesn’t take a steamroller and a lorryload of tar.

Song is Mercury Rev - Holes

Tuesday, 4 October 2016


Today, we took our 18-year-old daughter to the pub for a shandy. 

In my handbag was her passport, in case she got challenged about her age. (She didn’t, probably because she looked such an unlikely 18 that the only possible explanation was that she was actually 18).

“You shouldn’t drink too many beers like Phil because it’s bad for your liver,” she said, loudly, as we walked past a table of blokes, one of whom may have been called Phil, by the look on his face. (She was talking about Phil Mitchell, in Eastenders, by the way).

We stayed for tea, and she nursed her half pint of shandy (or ladybeer as she had christened it), for approximately one hour and thirty five minutes, announcing - with every tiny sip - that she liked it.

Her new charm bracelet jangled on her hand. Her Nan and Grandad came along and gave her a set of books and a book-shaped charm. A friend popped in, having followed the ‘Gone to the Yorkshire Grey’ note left on our door, and gave her a set of silver star earrings. When we returned home we had three phone calls, a Facetime, and two more visitors bearing gifts, which included money, a downy soft dressing gown, and a bottle of fancy champagne (Yes! One glass for her and five for me!). 

I called for my daughter to come to the bathroom for her shower for the fifth time, and joked: “Are you even listening to me? Is it all that shandy you had?”

She appeared in the doorway with a haughty look on her face. “I had ONE. I am NOT drunk.”

Eighteen years ago she was born and we were swept up in the hurricane of a disability diagnosis.

Eighteen years ago, the future was terrifying and bleak.

Today, that’s hard to remember.

Today, we celebrated.

Today, we took our 18-year-old daughter to the pub for a shandy.

Song is Pink - 18 Wheeler

Monday, 3 October 2016


Today I collected my daughter from her Prader-Willi Syndrome Best Friend Forever’s house. She’d been away since Friday - PWSBFF’s dad had kindly offered to take her along with them to the Prader-Willi Syndrome Association family weekend in the New Forest. (I had been otherwise engaged doing Best Man/Woman duties at my brother’s wedding).

My girl and her friend were giggly and excited and sounded like they’d had a whale of a time (telling me, as usual, in particular, what and how much they’d eaten, and in my daughter’s case ‘what a silly question it was’ when the waitress wondered if she could cope with the hot chillies in her pasta arrabiata).

Their filling me in on events also required some filling in on my part. I worked out from a few little clues that she may have had a couple of ‘choosing issues’ on a little shopping expedition to a bookshop, for example. (She mentioned ‘absolutely having’ to go back again). 

It was at this point that the pair of them set back the progress of feminism a few years. PWSBFF said she wasn’t bothered about being late for Saturday’s visit to the country park, because ‘that was for boys, really. Going on a train ride at the park is for boys.’ This was swiftly followed by my girl announcing that she’d changed her mind about what alcoholic drink she’d like on her 18th birthday, and that it’s not now a spicy Bloody Mary, nor a glass of bubbly, but rather a ‘ladybeer’.

“What’s a ladybeer?” I ask, perplexed. “Beer is just beer - you don’t get different kinds for men and women.”
“You do, you know. A special beer for ladies, with lemonade in it.”
“Oh, do you mean a shandy?”
“Yes. A ladybeer.”

An image of suffragette Emily Davison - and the horse she stepped in front of - doing a Harry Hill look to camera and shaking their heads in disappointment popped into my mind. 

On the car journey home, in between singing along to a Taylor Swift CD, I explained to my daughter that girls and boys can do anything they want to. “I was Best Man/Woman at Uncle Ian’s wedding, wasn’t I?” I said. 

“Oh. Yes, you were.” She mulled this over for a minute. “I bet you drank lots of ladybeers.”

Song is David Bowie - Suffragette City

Thursday, 22 September 2016


Approximately three minutes after explaining to the dentist that my daughter’s syndrome means that she has difficulty controlling her emotions, she put on a pitch-perfect demonstration, and it was a corker. We had a full-on meltdown, with angry sobs and streaming tears. And it wouldn’t stop.

Her usual dentist had referred her to a chap at a different practice who is apparently the bod to go to for wisdom teeth extraction. We’d booked the day off school, and it was expected that her two bottom extra gnashers were going to be wrangled out in the surgery after a numbing injection.

But upon examination, the nice man explained very patiently that actually, now he’d seen the position of my girl's teeth for himself, he felt it best she be booked into hospital and have all four of the buggers out at the same time, under anaesthetic.

Oh dear. He tried to get across that this was necessary and would be the most comfortable for her (even taking into account her high pain threshold), but that really didn’t matter. Because the ‘best plan of action’ was not the expected plan of action.

I should have given my daughter a Plan B scenario beforehand. I normally do. It was a rookie error. I should have primed her with a: ‘of course, that’s what is supposed to happen today, unless...and if not...then this will be what we’ll do.”

But I hadn't. So the change threw her into a tizz. “What was the point of coming if they don’t take them out?” she half-sobbed, half-shouted. “Why did the other dentist say I’d have my teeth out TODAY?” She was fully distraught, fully blinkered, and totally unable to listen to any rational reasoning from anyone in the room, including, especially me. 

I did the only thing I could. Hugged her, waved the worried dental nurses away with a wink, mouthing: ‘She’ll be fine”, and walked my crying daughter out to the car and home.

She was fine. Later. After two hours. The waves of emotion had white-watered and crashed, and rolled back out to sea, and she was ready to take in the logic of the new plan.  Her inconsolable devastation at a ‘Big Change’ seemed like it had happened to a different person.

And, as always, always happens, a difficult day was very soon followed by a good ’un. 

She returned home from school this afternoon to say she’d enjoyed working on the school farm (yes, her school does actually have a farm attached to it - you calling us Country Bumpkins, loverr?).

“We were doing sheep stuff, Mum - you know, sorting them.”
“Sorting them how?”
“Putting the girls away from the boys.”
“Oh, I see. did you tell the difference?”
“Well, the boy sheeps have testicles.”
“Oh, right.”
“And a penis.”
“But the girls don’t.”
“Wow, well, I didn’t realise you knew how to tell the difference so well.”
“Oh it’s easy. It’s just exactly the same as sorting humans you know - you look between the back legs for dangly bits.”

Song is Julie Byrne - Wisdom Teeth Song