52

Food is something I have to think about a lot. As mum to a teenager with Prader-Willi Syndrome, I need to be aware of what she’s eating, what portion sizes she’s having, and how to limit the amount of frustration she feels about her restricted diet.

My daughter has no choice. We have no choice. There are valid, consequential, medical reasons for limiting her food intake and keeping her weight under control. More so than the usual arguments against and dangers of obesity. She needs to eat less than anyone else just to maintain a normal weight, and this is despite a broken little part of her genetic make-up meaning she never feels physically full up. We help her with that - we always have, and we always will.

Because of this, it’s a cause of mortal shame to me that I’ve been a porker. As I’ve got older, and lazier I’ve piled on the pounds. I slid, with considerable aid from the universal lubricant called alcohol, into Extremely Bad Habits. After cooking a Weight Watchers meal for us all and buying fruit, veg, and low sugar snacks, I’d load up on unneccessary carbs late at night, absent-mindedly grazing my way through cheese on toast, and knocking back the best part of a bottle of red just because, well, because it was Wednesday, and it hadn’t been a very good Wednesday, all right?

I had an epiphany this time last year. No, it’s not a new liqueur. It was a blinding moment of realisation. I was the fattest I’ve ever been. I weighed as much as a prop forward with a pie problem. I was desperately unhappy with my levels of bulk. I hid from photos. I hated going to buy clothes. I didn’t want to book a check-up with my GP because I thought there was a pretty high likelihood that he’d warn me I was a prime candidate for diabetes. When I laid down in bed at night, I felt tired, unhealthy, and unattractive. 

I’ve been all kinds of shapes and sizes over the years and my husband has never once criticised my size or suggested I change anything about myself. (I have a sneaking suspicion this could be because when I put weight on, a lot of it goes on my tits, but anyway, it’s one of his more endearing qualities). He still told me I was beautiful, but I didn’t feel it, and I had serious concerns about his failing eyesight. I thought long and hard about what to do. Not letting him make an appointment at Specsavers wasn’t a proper option.

I needed to lose weight, but I needed to find a good way to do it. Not the same bloody crash diets I’d yo-yoed on before, starting off keen, finishing lacklustre-ly, and ending up bigger than before.

So I hatched a plan. A slow plan. A simple plan. Eat smaller portions, drink less often, and move about more. I know, I know, I should patent this, quick. It’s genius, isn’t it?

I saved my boozing for ‘dos’. Birthdays, parties, ‘event’ gatherings. Netflix nights at home did not count.

I had hearty porridge breakfasts to set me up for the day. I cut right down on bread, loading up ryvitas with tasty toppings at lunchtime. I stopped ‘picking’ at rubbish stuff, reaching for fruit instead of chocolate as snacks. But I didn’t cut it all out and I didn’t count calories. I just paid more attention and no longer ate for the wrong reasons (boredom, stress, you know the score).

The moving bit was gradual. I began by walking. I stopped using the car to go down the shops. I started doing regular five mile yomps with my mate (this is not a sapphic euphemism, a ‘yomp’ is a fast walk, and she has way longer legs than me, so it was fast). 

I swam. I bought a waterproof MP3 player and loaded up on podcasts and audiobooks, and I swam and swam and swam. (I do five miles a week. In November, I did a swimathon for PWSA UK, and did 400 lengths in an afternoon, going all pruney-skinned in the process).

I started playing badminton with the old folk down at the leisure centre. Some of said old folk are former county players and make me run around. A lot.

I took up squash. At an early training session, the coach had us doing little sprints up and down the court. I finished last out of the four of us. It nearly killed me. Now it doesn’t. I won a handicap tournament cup. In squash terms, I’m still pretty rubbish, but I’m competitive as f**k, and I will not give up on a point.

I was lighter. I felt better. I decided to try running. The last time I did this to any extent, I was about 30, and I remembered it being hard. But I had the bit between my teeth, so I started slowly, with the Couch To 5k app on my phone. It beeps at you and tells you to walk for five minutes, then run for one. 60 seconds seemed like an effing age. I thought I was going to have a heart attack. Then, after doing only five of the nine weeks, where you gradually increase the running times week by week, I skipped ahead, switched it off, and ran the whole 5k. It was still hard, but I felt like a God. A red-faced, out of breath, wobbly-tummied God.

In September, I joined a ladies’ rugby team. Where I wasn’t the fastest, or the fittest, but by  ‘eck, I always gave it my best. And I coincidentally discovered that leaping about and scrabbling in the mud is really funny.

So as the year comes to an end, I can now run 5k in under 30 minutes, and I’m close to breaking the hour mark for a 10k. I’ve run a couple of ten milers and I’m signed up for a half marathon. I set myself a target of running 100 miles a month, which I’ve just done for the second month in a row.

But my body is not a temple. Or if it is, it’s one which sometimes hosts hedonistic pagan festivals. I’ve been to plenty of parties, and over the festive period in particular have scoffed and chugged my way lots of scram and booze, but I’ve also pulled on my trainers and gone for a morning constitutionals to keep my hand in, or feet in, or whatever.

And I’ve lost 52lbs. Three stone 10lb. Approximately 23% of my bodyweight. That is, in every unit of measurement, a lot. (Oh, and I suppose, if you have basic competence at maths, you can work out what I weighed. I’ll give you a minute to push your jaw back up from the floor). 

The man I’ve shared my life with for 27 years has done what he always has done - been there for me. When I say there, it’s not right there, running alongside me, but rather over there, being a sports widower, looking after the kids while I’ve been out jogging round by the wind turbines, or chucking an odd-shaped ball around a floodlit pitch. So although I didn’t do it with him, I couldn’t have done it without him. He’s been rewarded, of course, in my increased levels of er...fruitiness. Although he has lost out in the tits department. (They get smaller first, you know. I swear I lost half a stone off them before any other part of my body changed. Am I oversharing again? I am, aren’t I?). 

So, I was scrolling down through my Bookface timeline today - something a lot easier now that my boobs don’t get in the way anymore -  and something struck me. Well, something after my first thought, which was: ‘God, you’ve become of those annoying twats who post all their run times’, which I ignored. No, the thing that I realised for the first time was that now, sometimes I post photos of myself. Which I really didn’t do much of before. Because I used to cringe at my image. And now I don’t. I don’t want to curl up into an embarrassed ball when people tag me in a photo (well, not always, although the recent one of me having a lap dance from a half-naked man in an elf-costume did have me dusting off the cringeometer, but that’s another story). 

For so long, I hated seeing myself in a photo and being confronted by the massive, muntering size of this person I didn’t recognise. 

Now I see me again. 

Photo at the top of the page: The left-hand side image was taken in December last year. The image on the right was taken this month, after rugby training turned into a bit of a mudbath. By the way, I haven't got a broken nose, that's just the mud and the light!

Song is Lucy Dacus - I Don't Wanna Be Funny Anymore. Chosen because it's bloody great, and I couldn't find a song called ' I Don't Wanna Be Fat Anymore'

Polar

We are about to embark on our rather marvellous ‘traditional’ Christmas Eve family visit to the local curry hut.

Unfortunately I’ve been forced to warm up with another tradition, instigated and enforced by my daughter with steely authority. Yes, I’ve had to watch Polar Express again.

I’d like to point out that I am filled with fine festive spirit (and a fair quantity of cointreau). As evidence, I’d like to state that over the holidays so far I’ve enjoyed watching Elf, Home Alone 2 (apart from the jarring and almost ruinous cameo from Donald Effing Trump), and Scrooged. And I’m really looking forward to watching The Muppets Christmas Carol when we roll back home filled with tikka, mango chutney, and Christmas cheer.

However, Polar Express is the one film that can turn me into a Grinch. It’s atrocious. First of all, there’s the ‘uncanny valley’ graphics - which manage to turn Tom Hanks, the man who put the unc in avuncular, into a sinister waxwork. Then there’s the horrific soullessness of the deserted, dystopian Amazon warehouse at the North Pole (when the kids get lost  there, I have a genuine fear that the night shift manager will suddenly appear and they’ll be forced to start zero hour contracts). And finally, there’s the creepy, Joe-Pesci-alike-and-not-in-a-good-way elves.

But hey, it’s over now. I’m OK. Poppadoms are soon to be consumed. I’m calm. 

My girl keeps whispering to me that she doesn’t actually believe in Santa any more, although she did write a long and extremely detailed list to him, and was extremely concerned about whether I’d posted it or not, so I would say that bets are well and truly being hedged. My boy is trying to act cool by rapping along to Twenty One Pilots songs, but is so excited I might ask him to turn the oven on in the morning, because there’s no way he’s going to get any sleep tonight.

The turkey’s defrosting. I’ve borrowed my mum’s hostess trolley, which - thanks to the dear, departed Victoria Wood - I keep pointing to and slapping my arse, whilst winking at my husband and asking him if he’s got his Woman’s Weekly ready.

Happy Crimbo, people.

Video is Victoria Wood - The Ballad Of Freda & Barry

Corrie

“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

Stricken

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

Samples

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:

Mulling

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

Missives

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.

Beyond

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.

Swimathon

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.

CLICK HERE TO DONATE

Song is Sly & The Family Stone - I Just Learned To Swim

Potholes

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

Eighteen

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

Ladybeer

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

Wisdom

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. And...er...how did you tell the difference?”

“Well, the boy sheeps have testicles.”

“Oh, right.”

“And a penis.”

“OK.”

“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

Rockin'

I had my mobile phone clamped to my ear as I rang Rachel, my daughter’s PWSBFF’s (Prader-Willi Syndrome Best Friend Forever’s) mum.

We were due to meet them at The Rockin’ Roadrunner Club’s Seaside Festival, a music festival in Northampton organised with and run for young people and adults with disabilities. A band was playing on one stage, dancers were strutting their stuff in front of another, and queues for the ice cream van snaked round us.

“We’ve just arrived - whereabouts are you?” I half-yelled into the phone, raising my voice above the general hubbub. “Can you see the helter skelter and the stage just behind it?” came Rachel’s reply, loud and clear in my ear. “Yep, we’re really close to that. I’ll stand and wave.” “OK, so will I.”

At this point, we both turned and flapped our arms about. The reason I know that she turned and flapped like me was that we were actually standing pretty much back-to-back with eachother, so close we could have high-fived if we’d have been a bit quicker about it. It explained why we’d been able to hear eachother so clearly.

PWSBFF was about to go on stage with her disabled dancing club. My girl clenched and rubbed her hands together in excitement. PWSBFF didn’t disappoint, performing a dancing/sign language routine to Cliff Richard’s ‘Summer Holiday’ with tremendous gusto - completely unfazed by the crowd.

Soon after, we followed her over the the main stage, where she took part in another set of routines, including a rather balletic one to an Adele song (don’t ask me which one, it was one about her being pissed off at her boyfriend. I realise this doesn’t narrow it down...)

Afterwards, we congratulated PWSBFF on her confident performance, and Rachel, to my delight, congratulated me on my arse. (I’ve lost some weight and had fitted into some more slender jeans than she’d seen me in before, and not only will I take an arse compliment whenever I can get one, I will bloody well write about it here so that there is some kind of official record).

It was snack time, so we gave the girls some nuclear-strength purple food-colouring Cherry Brandy lollipops, leaving them with stained teeth, tongues, and lips.  

On the hunt for fun photo opps, I got my girl to flex her muscles with some unfeasibly-muscled, historical Baywatch types (who looked suspiciously like the stilt walkers from the last Rockin’ Roadrunner event we went to). 

We then headed towards BBC DJ and all-round good egg Jo Whiley (an ambassador for Mencap, who often DJs for Rockin’ Roadrunner events along with her sister Frances - who has learning disabilities - and whose family helped found the club). 

“Can the girls have a photo with you?” I asked, having seen Jo pose for scores of similar requests with patience and good humour. “Of course!” she smiled, immediately chatting to PWSBFF about her performance after noticing her dance club T-shirt. In the meantime, I shot out a hand to grab my daughter as she wandered straight past Jo, on her way, presumably, to stand next to the tombola stall-holder. (If my daughter could summarise her narrow celebrity recognition factor it would be: ‘If you ain’t in Eastenders, you ain’t famous, mate).

We couldn’t stay too long, for Prader-Willi Syndrome hot meal timing related reasons. But we enjoyed our mini-festival, and our wanderings in the throng of happy, smiling faces. 

These events are something special. Seeing so many people with such a varied range of disabilities, watching, taking part, manning the stalls and carrying out a range of jobs, organising, running and enjoying the day, is special. Seeing my girl so pleased to meet up with her friend is special. 

Rockin’ Roadrunner - you rock. 

Video is Ben Folds - Rockin' The Suburbs

The next Rockin' Roadrunner Club event is a Christmas Club night at The Roadmender, Northampton. More details coming soon on their website, here.