Checklist

I don’t know what it feels like.

My daughter has Prader-Willi Syndrome and it affects her life and our family’s life every day, but I don’t know how it feels inside her head.

I don’t know what it feels like to be hungry all the time. I don’t know what it feels like to have anxiety levels that can be overwhelming. I sometimes imagine her worries to be like a swarm of bees, humming and buzzing in the background, but I don’t know what it feels like.

Flip the coin, though; I do know what it feels like when I watch my daughter cope, and I do know what it feels like when she surprises me.

Like today, when she came home from college, beaming, showing me a booklet she’s been working on with her tutors about mental health awareness.

“I did really well today, Mum. Look at my big list of anxieties I made.”

Shout
pacing
shut down
fidget
crying
shakes
freeze
faint
not talking

random words
stomach turning
blood heart go quicker

My first thought was "That sounds like my symptoms after a hen night involving ill-advised consumption levels of tequila", but my second thought was "That’s a pretty self-aware list".

She was really proud of herself for writing out the feelings and ways in which her anxieties manifest themselves. (Although she’s never fainted, so quite where that one came from I don’t know). And I felt proud too. It’s actually a pretty good check-list, and a demonstration of the very different ways in which her mental health issues can surface.

It’s a bit weird, isn’t it, a parent and a child smiling at eachother and high-fiving over a long list of ways she demonstrates being upset? 

But when it comes to PWS, weird is normal and normal is odd. I can’t get inside her head when she’s being amazing, brave and strong, but I really hope it feels good in there. It should. 

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Song is Ty Segall - Feel

Pilots

The ear defenders were on before we got out of the car, despite the fact the flying display wasn’t due to start for another hour.

“I don’t like loud noises, do I?” my daughter said, verging on a mild shout, because her hearing was muffled.

Thanks to a friend, we’d scored some free tickets to a military pageant airshow at a local airfield.

As with all outings with a Prader-Willi Syndrome participant, grub was sorted first, with a picnic served as soon as we’d staked out our pitch behind a fence next to the grassy runway.

Then, after spending way too long cack-handedly working out how to tie an umbrella to a beach chair to provide some shade for my girl on a blazingly sunny day, we sat back to watch the planes soar overhead.

My daughter’s anxiety levels were at a low hum, with minor issues including any suspected presence of a buzzy insect within 10 feet of her, a sore eye from some wayward sun cream, and a potential but averted crisis over a change of mind about the choice of ice lolly from Calyppo to Twister.

But we piloted her. Subtle rudder changes. The odd little steering adjustment.

She sat and chatted loudly, watched the planes loop the loop, wrung her hands and fiddled with her fiddler, sipped a capuccino, had a micro nap, enquired if we’d be home for ‘normal tea time’, and grinned, a lot. 

Meanwhile my friend and I invented a new type of human cooling system (ice packs down the cleavage, henceforth to be referred to as a Tit Fridge).

All in all it was a high flying day.

Video is Goldfrapp - Pilots

Vision

Anxiety besets us all, but when you’re the parent of a child with PWS, you get beset by their besetting too.

We had a seemingly simple task to complete after school today: an eye test.

It took 80 minutes of cajoling, coaching, explaining, shushing and minor reprimanding. It resulted in an eventual victory with a side order of tactical retreat. But it’s the first time in Dry January that I’ve been sorely tempted to get wet.

My girl was a bit tired after a busy day. She was in a questioning mood, which can be either endearing when well-timed or exasperating when not.

But what sucked up the time today was her obsession with the details. From the moment we arrived at the opticians, I knew the path to glasses was going to be labyrinthine.

Firstly, she started talking about having to pay for her specs now she’s over 18. She’d overheard me saying something about it to her dad earlier (from a distance of one floor and three rooms away, thanks to her bat-like hearing). So she wanted to announce it loudly in the shop - I think essentially just to show off to staff and other customers about being an adult - and she did. Many, many times, before, during and after the eye test.

The optician was given both sides of my daughter’s all or nothing conversational skills. When asked to read out the letters, my girl stared into space, day-dreamed, looked like she might actually fall asleep at one point, but mainly uttered each letter in-cred-ib-ly slow-ly, with in-cred-ib-ly long pauses between each one. She seemed to be struggling, but there’s this detective game that needs to go on, in assessing whether she is really looking where she’s supposed to, whether she’s just taking her time because processing things does take her longer than most other people, or whether she’s just saying she can’t see very well because she fancies a new pair of glasses. It’s a challenge. 

On the other hand, my daughter sped up, dramatically, at exactly the wrong times: whenever the optician wanted to explain anything or give her instructions, instead of deliberations and pauses, my girl unleashed a non-stop barrage of circular statements and questions at the optician, at me, and even at herself.

It took patience and time to get through the test. And the optician did remarkably well not to lose the will to live, because I very nearly did, and I’m the mum.

Then came the bit where you sort out the frames. It started well with my girl making a miraculously fast choice (only because she had very specific criteria for them being ‘roundish’, ‘with no sticky on nose bits’, and with ‘a pattern on the inside’, and there only happened to be one pair that ticked all three boxes, Hallelulah!)

But it then took forever as she began to get slighty panicky and very question-spewy at pretty much everything the assistant was saying about lens types, coatings, sizing, price, offers, expected delivery, and there might have been even more stuff but I couldn’t bloody hear because my daughter wouldn’t bloody shut up!

We left, past tea time (I blamed myself for a booking a dangerous appointment time). I’d declined to sort out the free second pair offer - that could wait until another day when I’d had chance to charge up my resolve, and she’d got some food in her belly.

I forked out a vision-blurring amount of money, and we headed home. And I had that thought, that selfish thought that I sometimes have, and hate myself for. I wished things were different. Simpler. That my 19-year-old girl could get herself kitted out with new specs like any other typical 19-year-old.

She’ll do something atypically delightful tomorrow, I know, that will make me laugh, and make me grateful and give me the joy that only she sparks. And my ugly wish will melt away. Because it is ugly. (It’s just struck me how weird it is how it sometimes surfaces over small things like an eye test - compared to the hospital scans and operations this is easy, beginners’ level stuff). 

Wishing she didn’t have PWS is pointless and reductive and I can’t wish it really, it’s not fair, because she wouldn’t be her, she wouldn’t BE without it. But I’ll know I’ve wished it all the same.

Song is Snowbird - All Wishes Are Ghosts

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

Anxiety

This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.

Anxiety

We all get anxious about things. Sometimes we fret about trivialities, but usually it’s the big stuff: exams, work, mortgages, relationships, the lack of willies on the heavily-oversubscribed-with-ladygardens Game Of Thrones. You get the picture.

For many people with Prader-Willi Syndrome anxiety can be as much of an issue as appetite. They are champion fretters. Worrywarts. And just as you need nerves of steel to negotiate the minefield of mealtimes, you also need to become adept at assuaging anxiety. 

My daughter gets anxious about things you’d expect any 16-year-old to be anxious about. And lots that you wouldn’t. Here’s a random selection of her worries* (*excluding the obvious “How long is it until dinnertime?”):

“Am I still breathing?”
“Will the hairdresser cut my hair too short?”
“Am I grinding my teeth down?”
“Is my schoolbag falling apart?”
“Will *insert name here* be there?”
“Will *insert name here* die because they’ve got a cold?”
“If this is a Disney film, I can’t watch it, it’s too babyish! Is it?”
“Is Topsy and Tim recording?”
“Will my tablet run out of batteries? It’s only 89% charged!”
“Why doesn’t my brother like Hello Kitty?”
“Why doesn’t Daddy like aubergines?”
“Santa isn’t going to bring me any presents, is he?”
“Will you be late?”
“Will we be late?”
“Will they be late?”
“Is Hitler in the toilet?” (I’ve written about this last one before. It’s the kind of thing that tends to stick in your mind.)

If I had to come up with a new ‘fretboard’ next week, several of these worries would still make the list, but the chart chops and changes, and never fails to surprise. Anxieties can arrive out of the blue, where there seems to be no earthly reason for them. Other times, their genesis is obvious; my daughter like to know when, where and why things happen, and they like them to happen exactly as planned in the expected order - and life? Well, life has a tendency to ‘un’ its ‘predictability’. 

So what can you do to minimise a PWS person's anxiety?

There is no easy answer. But sticking to your plans where you possibly can is a good start. And having a plan for when plans don't go to plan is another good plan. (I hope that's clear, I got lost in the middle there for a minute).

We don't always get it right. We try to explain, to distract, and to comfort. It's better to demonstrate than remonstrate.

And mostly, we just wait. The huge, all encompassing, meltdown-inducing worry might remain a problem, but often, in a day or two, it’s forgotten about. Just like a dead dictator in a toilet.

Song is Michael Kiwanuka - Worry Walks Beside Me

Humming

When I collected my daughter from After School Club, they said she’d been a bit upset after her and Bethany had mixed up their mummies. I didn’t quite understand: Bethany’s mum is about four inches taller and four stone lighter than me. It was only when I was handed a bandaged-up Pringle tube that I twigged it was Halloween decorations they were talking about.

My girl had dried her eyes, but they were still a little red. There was an almost audible buzz of anxiety around her. It was electrical. It hummed and fizzled throughout tea, and then it short-circuited at bedtime.

“I don’t know if that’s my mummy!” was the first wire to go kaput. A second strand came loose: “I don’t want to walk to secondary site, I’m too tired.” Another wire pinged: “I think it’s my sleeping mask, I don’t think I’m sleeping so well when I wear it.” 

I could see what was going to happen and I could do nothing to stop it. The delicate cable ties holding the bulging bundle of worry wires running through her head had snapped,  and that whooshing sound was her hot tears hissing on the escaping sparks of anxiety. I hopped into bed with her, squidged in tight, and wrapped my arms around her as she sobbed into my shoulder. 

“I don’t want to be Catherine’s friend she says wants to be mine but I’m not her best friend she wants to go to a different school next year will I go to a different school I want to go with her but I don’t want to my back hurts Mummy I get tired when it’s PE and swimming I want you to put the sleep mask in the bin cut it up but I want to keep it in my drawer I want to wear it I don’t want to wear it I’m not sure about the sleepover next week I don’t know whether I’ll be too tired to go but I want to go I haven't done my thank you letters yet can I do trampolining we’re going to do trampolining but what about my back I really don’t think that’s my mummy I want to wear the mask Bethany does can you ask her mum to tell her not to wear it because I don’t want to wear it that my mummy I can’t remember who bought me the till for Christmas was it the year before last why is it broken can you find out about Sportszone I want to go on the bus to After School Club on a Monday not walk did I sleep well I’m not tired I am a bit tired I’m hungry Mummy.”

I made soothing noises, tried to address each jumbled up worry, and then gave up. Nothing was registering. She needed to cry. I had to let her. I had to wait. Half an hour later she had cried herself to sleep. I felt like doing the same.

This morning, I walked into her bedroom and pulled back the curtains. She sat up, swung her legs round and planted her feet on the floor, rubbing her eyes, sleepily. “Good morning, Mummy!” We smiled at eachother. There was no sound of humming, or buzzing, or crackling. A good night’s sleep had reset her trip switch. And mine.

Video is Portishead - Humming