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

Handbag

My daughter’s no-nonsense teacher asked her special needs sixth-formers to get ‘age appropriate bags’ over the summer holidays. Now, after five weeks of my two children at home, I’m the one with ‘age appropriate bags’ under my eyes, but I know what she meant. Mrs D felt that it might make my daughter and fellow pupils in her satellite class at mainstream school feel more grown up and more like the other students if they weren’t carrying round Minions packed lunch boxes and Hello Kitty satchels. Saying this, I vaguely remember wearing a Thomas The Tank Engine cardigan when I was a sixth-former, but I was a shocking attention seeker...

So today we went shopping, and my girl found this one. A pale pink faux-leather handbag big enough to fit her packed lunch box/school diary/pencil case/rain mac/purse/phone into. All the essentials.

She was utterly delighted with it. I swear that she was more thrilled with her cheap and cheerful shoulder bag than a reality star from The Only Way Is Essex would be with the latest Louis Vuitton.* (*Please note, I couldn’t name anyone from that show, and I had to Google ‘popular designer handbag brands’ to make that comment. I can tell you the name of the drummer in The Pogues, though, so I do know about important stuff).

We followed up our shopping expedition with a scheduled appointment with my daughter’s neuro-psychiatrist, where The Prof was duly amazed at her animated chit chat (my girl is normally a little shy with him). I explained that I didn’t think it was a sudden re-occurence of the extreme highs (part of her mild bi-polar type mood disorder that he has helped keep under control brilliantly over the past couple of years). “She’s just on a handbag high,” I explained. “Ah, my wife has those,” he nodded.

As if her day couldn’t get any better, I then took my glowing girl to Pizza Express for lunch, where a concerned waitress warned that my daughter’s order of Leggera (Light) Pollo Arrabbiata might be ‘too spicy for her’. My peri-peri, chilli, tabasco, reggae-reggae sauce-loving girl threw the woman some proper shade and pronounced: “That’s the POINT.”

But she hadn’t finished making me smile. I asked her if she wanted to go to the toilet before we left. She looked at me, earnestly, and answered in a flash: “Yes. I don’t want to wee in the street like a dog.”

Song is Shane MacGowan And The Popes - I'll Be Your Handbag. It's inappropriate and sweary. But that's the POINT.

Stabilisers

My daughter’s wobbly bike ride through life hit some serious potholes earlier this year.

We’d had bent spokes before, and the odd puncture, but nothing like this.

She started suffering bouts of destabilising sleeplessness. In the worst throes of it, she span out of control, with jittery and agitated long nights of freewheeling, followed by days where pedalling was too much effort.

The medical investigations started. An MRI ruled out anything like swelling on the brain. An EEG, the results of which took an age to turn up, has finally confirmed that she isn’t suffering seizures.

In the meantime, a neuro-psychiatrist diagnosed the problem as a mood disorder on the spectrum of bi-polar. Lamotrigine, a mood-stabiliser, was prescribed.

Now, two months later, the bike is back on track. It still won’t travel in a straight line, but then it never did. Its rider is happy again. Fitting the stabilisers has brought our daughter back to us: with all her funny little ways, her shy smiles, her meandering chats and occasionally clunky gear changes. 

She’ll never pass the drugs tests for the Tour de France, though.

Charles Wright - Ninety Day Cycle People

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Shakes
Howling
Scrap
Allnighter
Brainwaves
Pill

Escape

I’ve been carrying something heavy around with me. It’s an unwieldy backpack stuffed with worry. I hooked it over my shoulders at the beginning of the year, and it’s been digging in to me ever since.

At first it was hugely awkward and I was constantly aware of it. But over time, I got used to it - and I didn’t realise how much it was still weighing me down until today, when a complete stranger helped me meticulously sort through its contents and find somewhere else to put them for a while. Damn, it’s good to take a deep breath, stretch out, pull my shoulders back, and stand tall. 

I’ve written extensively on this blog about my daughter’s unusual sleep patterns and uncharacteristic behaviours that have been buffeting all our lives in tempestuous cycles in recent months. We’ve had medical tests which have so far revealed no obvious physical cause. We’ve a paediatric referral, which failed to reassure me in any way, and we’ve been lost - for some considerable time - in the error-strewn circle of hell known as NHS admin.

But today, we saw a psychiatrist for the first time. He was a hugely experienced, gentle, gentlemanly man, and I spent three hours encased in a room talking to him on the hottest day of the year.  He met my daughter, or rather the spaced-out version of my daughter that appears after a sleepless night, which was probably rather fortuitous timing. He took an exhaustive and exhausting medical history that taxed my memory and stamina. When he told me he was keen to discuss my girl's case with a long-standing friend and colleague who just happens to be one of the most foremost experts on Prader-Willi Syndrome in the UK, and whom I’d watched make a presentation at yesterday’s International PWS Organisation Conference, the relief flooded through me. 

We were in the right place, seeing the right person. This occurs less frequently than you think, and oh, how fine it feels when it happens.

There’s a long way to go. The phrase ‘mood disorder’ has been mentioned for the first time. This is in no way a diagnosis, and there is still more medical evidence to gather and examine, but it’s being looked at. A plan will be made, with input from good, knowledgable, experienced people. Something practical is happening. We have momentum. 
_____

Oh, and dear God, I almost forgot, which would have been unforgiveable. Thanks, Mum, for sitting in that tiny, sweltering waiting room all afternoon. Steve McQueen had a baseball to keep him occupied in The Cooler, and that cissy had it easy - you had to sit in the sweatbox with my PWS daughter (at various points), and my ants-in-his-pants son (at all points and beyond). You know, I really wouldn’t have blamed you if you’d revved off and tried to leap the fence on your Triumph motorbike. Well, Raleigh Shopper, maybe.

Music is Ólafur Arnalds - And They Have Escaped The Weight Of Darkness