Saturday, 30 April 2016


To other eyes, my daughter might not have looked especially engaged. Compared to some of the hardcore teeny, tiny, indie kids jumping and dancing around at today’s child-friendly gig, she was particularly sedate. 

Although she’s not diagnosed with autism, her syndrome, PWS, overlaps with it. Loud noises and loud music can overwhelm her. And her poor muscle tone and shyness in a room full of people means that she is unlikely to be overtaken by the urge to jitterbug, or, indeed, bodypop.

So, of course, her ear defenders were clamped on firmly as soon as there was any chance of a band appearing on the stage at the Little Loud Women matinee show at The Lexington, in Islington. She displayed no discernible signs of wanting to wig out. She sat, wedged on her bench seat, unwilling to go any closer to the stage for the first three bands.

She was, however, paying close attention, and attributing her own unique ratings: Argonaut she liked, because “they were the quietest”; The Wimmins’ Institute were also good, because "they weren’t as quiet, but they kind of were” (plus “they did a song about pirates that said you didn’t need a willy to be one, and that was very funny, Mum”. I myself thought the “Yo Ho, let’s go!” line was the winner). But the punchy, punky indie rock from the lively Crack Foxes was dismissed, instantly, for yes, you guessed it, “being much too loud”. When the singer announced that the next song would be their last, my daughter’s unfair and purely volume-based antipathy towards a stomping cover of These Boots Were Made For Walking was made plain to all around her when she blurted out: “Thank God for that!”.

And then something astonishing happened when Piney Gir came on. My girl and Piney have history. She’s seen her and her band from a 'safe' distance a couple of times at Daylight Music gigs at The Union Chapel, had several shy chats with her, and has been thrilled with her signed copies of CDs.

So I chanced my arm, suggested that we got up off our seat, and held my daughter's hand as we walked forward the few metres to stand directly in front of the stage. My friend and her two daughters were already there (one of her girls nonchalantly joining the band on the stage as they set up their instruments, along with a posse of other wannabe roadies). My girl looked up at Piney, nervously checking her ear defenders as she did so.

And stand there we did, as the band served up a slice of their sunny, melodic, be honest, a little bit loud, indie pop. My girl still looked on edge, so I decided a minor tactical retreat of just one step back might relax her. It seemed to do the trick, and I watched as she whispered along to familiar songs, partook in some slight toe tapping, swaying, and even a little sidestep or two. 

It doesn't sound like much. But what she did, to stand there, right there, so close, for her, for me to see, was the equivalent of a full-on pogo in the mosh pit.

I thought it couldn’t get any better. Then a giant bee turned up. (If you don't believe me, check out the photo). And then Piney had some vinyl copies of her latest album for sale on the merch stall, and she signed one for my girl, who now has a Piney record, just like Mum and Dad’s records, just like the Taylor Swift LP that is the only other record in her burgeoning collection of...well...two. Two records.

On the way to Kings Cross Station, we bumped into a Crack Fox coming out of a restaurant. “You were at The Lexington!” I blurted out, inanely, as I did that double take-do-I-know-you kind of thing with the guitarist. “I didn’t like you, you were too loud,” my girl announced as she walked past. Hopefully her voice didn't carry...

“Did you have fun?” I asked my daughter as I wedged myself next to her in my train seat, clutching the enormous wicker picnic basket we’d won in the gig raffle. (What do you mean, I didn’t mention winning an enormous wicker picnic basket in the gig raffle?).


A big, satisfied sigh.

“I’m glad I took my ear defenders, Mum.”

Song is Piney Gir - Tilt A Whirl

Tuesday, 26 April 2016


It came sooner than expected. My mobile rang.

“Mum, I’m here.”

She’d walked the whole way to school on her own. I told her she’d done brilliantly. She sounded really pleased. Proud of herself.

I sat on my stairs. Just for a minute. 

Then I started yelling for her brother to get a move on, while I dashed about, looking under the sofa for his missing book bag.

Just one call. Just a moment. 

It came sooner than expected.

Song is Badly Drawn Boy - Journey From A To B

Related post: Solo

Wednesday, 20 April 2016


If you look closely at this photograph, in the distance, you’ll see a figure in a purple coat.

If you look again, you’ll notice that the figure is alone.

That’s my girl. My 17-year-old daughter, walking to school (well, part of the way to school), on her own.

Her teaching assistant has been calling for her in the morning and letting her take the lead on the quarter of a mile walk from our house to her classroom. The helper has been dropping back, ‘shadowing’ and offering help and advice where needed, as my daughter’s travel training has stepped up a gear.

This morning, she suggested that my girl meet her at the first road she has to cross, around the corner of our cul de sac and just a few hundred yards along.

Tomorrow, she’s meeting her a bit further along, after she’s crossed on her own. 

Each day, step by step, my girl is being given more free rein, until she’s able to safely complete the short, but oh so epic journey. Solo.

I’m terrified, of course. But if my anxious girl can do this thing, this mundane, run-of-the-mill, utterly amazing thing, then I'll do my bit: let her.

Song is Buzzcocks - Walking Distance

Saturday, 9 April 2016


We decided to do the old home-made sweepstake for today’s Grand National.

I took the kids round to Nanna and Grandad’s, we snipped out the horses’ names from the newspaper, stuck them in a bowl, and each of us picked out eight.

We decided on a stake of £2 per person, bringing the pot of winnings to a grand total of a tenner. Rather than let one person win the lot, I thought a £4 for 1st, £3 for 2nd, £2 for 3rd and £1 for 4th arrangement would prevent arguments for sore losers.

It wasn’t until they were under starter’s orders that I remembered how excruciating it is to watch a race with my daughter. From the first hoofbeat, she’s emoting loudly, directly into my left ear, anxious at every faller, asking if her horses are out or in, winning or losing, if they will finish, if they will win, if not why not, etc, etc. I forgot about the worry levels. Meanwhile, her brother is yelling into my right lughole that he doesn’t know which are his horses. 

“I can’t hear! Quiet! I don’t KNOW who is going to win, they haven’t finished yet!” I exclaim.

As the race goes on, I see a lot of my boy’s horses falling, and start to think that maybe it’s him that is going to cause a problem today. He’s not the one with special needs (or special knees), but he can be a right mardy-arse when it comes to losing. I cross my fingers and hope that he gets a horse that’ll earn him at least a pound or two in winnings.

He didn't. My girl has the first three horses.


My boy is losing his shit. My girl is grinning. £9 is coming her way. Grandad is bagging the final quid. I’m six quid down as I paid for mine and the kids’ stakes. Why did I think this was a good idea?

Then I find out the winning horse is owned by Michael O’Leary, the owner of Ryanair, or as I like to call him Mr Fiddler (the grasping ‘that’s a paaaooound’ farmer from Carry On Camping).

I understand now. I understand the feelings of anger, frustration, temper, bitterness, and penury that my son feels. It’s just like flying on Ryanair. The jockey probably had to pay to take his saddle into the winning enclosure. He’ll also have to sort out a taxi to take him to his hotel tonight, which will be at least 40 miles from Aintree.

I’ll forget, of course. We’ll do it all again next year. Once more unto the Becher’s Brook, dear friends. 

Song is The National - Racing Like A Pro

Tuesday, 5 April 2016


My daughter’s voice sometimes carries a long way. Some of her statements seem perfectly timed to ring out and shatter those odd occasional moments of silence in a conversation or a crowd. 

Visitors to a local open farm were treated to one such tip-top declaration this week, relayed to me by the mum of PWSBFF (Prader-Willi Syndrome Best Friend Forever), who took the two girls there for the afternoon.

A crowd was gathered around a sheep which was giving birth. When the lamb’s head had been hanging out for quite some time, staff called for the farmer chap to come and help move things along.

The girls stood, fascinated, as the man rolled up his sleeve and did a James Herriot, rooting about to release the lamb, who plopped out onto the hay.

The commentary went as follows:

PWSBFF (disconcerted): “Mum - that’s the man who was helping in the cafĂ© and he’s just stuck his arm up that sheep’s bottom. It’ll have poo all over it!”

My daughter (her voice amplified off the walls of the pen and booming out like a tannoy message for the hoards of wide-eyed small children): “No, no, no, I’ll think you’ll find he’s gone right up her vagina.”

Song is Lady Lamb The Beekeeper - Bird Balloons

Friday, 1 April 2016


My daughter’s school holiday sleepover tradition with her PWSBFF (Prader-Willi Syndrome Best Friend Forever) was upheld this week.

First, we had a girly trip to the cinema to watch a special screening of the recent stage adaptation of The Railway Children. 

meal at Prezzo followed the steamy, red bloomer-flagging action (perhaps I should re-phrase that, as it sounds slightly dubious). Light menu choices were chosen, pasta and salad dishes were hoovered up hard enough to strip off plate enamel, and beaming faces beamed back at me across the restaurant table.

But it was an incident that occured when we all got back into the car which stuck with me, and made me smile.

PWSBFF managed somehow to shut her leg in the door (not to any serious degree, I hasten to add, and this isn’t, of course, what made me smile. What do you take me for?). 

Clutching her shin, she let out some yelps, ows and ouches.

My daughter’s first response to the mini drama was this: “I hope you’re not going to keep me awake tonight.”  

“Er, excuse me,” I pointed out. “Don’t you think you ought to ask if she’s OK first?”

My girl looked at me with incomprehension. PWSBFF giggled. I explained: “Sweetheart, when your friend hurts yourself, the first thing you should think of is to check she’s OK, not if she’s going to be noisy later!” 

PWSBFF took up my tone of admonishment: “Yes, I thought you were supposed to be my friend!”

My girl looked stricken. “You are still my friend, aren’t you?”

PWSBFF giggled again. “Yes, of course I am!”

My daughter blew all the air out of her cheeks with relief. “THANK GOD!”

There was a slight pause.

“But she’s not going to keep me awake, is she?”

Music is Vic Mars - Fences, Railway Lines And Other Obstacles