Forget

I sometimes forget my daughter has it.

I sometimes snap at her when she asks me for the 10th time when tea is ready.

I sometimes fail to remember that she’s not just being impatient. She’s not just tired or bored (although if she is either of these things then the intensity of her chef-bothering increases).

Having Prader-Willi Syndrome means my daughter is hungry. Physically hungry. All the time.

I could tell you about the science, and the tiny missing stripe* on one tiny chromosome that causes this. (*Stripe may not be the accepted medical terminology here).

But all you need to know is that the little switch in my daughter’s brain that should click on to tell her she’s full up doesn’t work. 

(Incidentally, the same little switch in my brain seems to develop some kind of fault within 20 feet of a cake. It must be an as yet undiagnosed syndrome. If any scientists are out there, I’m perfectly willing to help with research. As long as I get to eat lots of cakes).

She really can’t help it. She’s not being greedy. And amazingly, for the most part, she doesn’t plague me all the time for food. When her days are structured, and she has her set meal and snack times (a rigid school timetable helps here), she probably begs for grub less often than my toddler, who I believe is starting a new world religion which involves worshipping at the altar of the biscuit tin and praying to a God made entirely of Custard Creams.

So although sometimes I do forget, I try really hard not to. I attempt - not always successfully - to keep a lid on my irritation if she does get stuck in a food loop.

Because when I imagine what it must feel like to always be hungry, my heart aches for her.

Video is Bob Marley - Them Belly Full

Bananas

When my daughter was about three years old, a friend of mine invited me on her hen night.

This involved a group of us going to the local theatre to a performance of Sing-Along-A-Sound Of Music. Before you say it, I know it’s not exactly the height of sophistication, but compared to my hen weekend at Butlins in Bognor it was high class culture, believe me.

As part of the prescribed fun, we had to dress up as characters from the film. 

Not for me, the easy option of a generic nun. Oh no. I had to be different. I decided to go as ‘The Hills’. If I’m honest this was purely for cheap gag purposes. It meant if anyone asked me what I was, I could reply: “I’m alive, with the sound of music.”

But where to get the materials needed for my makeshift costume? Easy, I thought. I’ll pop into the greengrocers, and they’ll give me a spare bit of that plastic astroturf they use to display the fruit boxes on.

However, when I wandered in with my daughter (who I was still pushing everywhere in an oversized buggy), the fella behind the counter said: “Sorry, luv, no can do. It’s expensive stuff. What do you want it for anyway?”

It was at this point, I lied. Not wanting to wheel my girl round a fancy dress shop at the last minute, and thinking on my feet, I looked downcast.

“Oh, don't worry. It’s just my daughter. She’s disabled. She just loves this plastic turf. It’s very tactile and she loves to feel it. But it doesn’t matter. Never mind.”

The greengrocer looked slightly guilty at his earlier refusal, and took a small piece out from on the counter, placing it on my daughter’s lap, looking expectantly at her face. Of course, as her astroturf adoration was entirely fictional, she wasn’t remotely interested.

So I leaned forward and whispered in her ear: “Bananas!”

Instantly, she grinned from ear to ear, and the lovely man behind the counter ran, literally ran, to the back of the shop and returned with armfuls of the stuff for me. (Enough to transform me into The Hills, I noted, with satisfaction).

It was wrong of me. I know that. I invoked her disability, played on a stranger’s pity, and then used the hunger caused by her Prader-Willi Syndrome for my own selfish ends.

But I’m not a complete bitch. I did buy her a banana.

Video is The Dickies - Banana Splits

Poppy

At first, it’s hard to accept that your daughter could be bullying someone. But she was.

It was her best friend who was the victim. What’s worse, I let it happen. In fact, I think I even encouraged it.

Her name was Poppy. She was a bit younger, and was a slightly unfortunate little girl.

My daughter took her under her wing, invited her home for tea, and gradually, subtly, and expertly, made her life miserable.

When my daughter got off the school bus and told me about her day at school, she’d make a great effort to inform me how Poppy was ever-so-slightly worse than her at everything: PE, Art, Maths, English - the lot.

She often invited the hapless Poppy home for tea, and for sleepovers.

On the day my little girl had gone up a reading level at school, she’d look at her pal and shake her head, looking sympathetic. “What’s that Poppy? You’re still only on Level Two?”.

If they played Top Trumps or Uno, my little angel would cruelly point out: “You haven’t won one game yet, have you, Poppy?”

I did sometimes feel a twinge of pity for Poppy. But I still let my girl lord it over her whenever she wanted to.

Want to know why? 

Poppy was my daughter’s imaginary friend.

It didn’t take a genius to work out that my daughter was using her as a kind of mental punch-bag. Poppy was a construct for a little girl who was struggling to keep up with her peers at mainstream school, and whose self-confidence was dipping.

Poppy’s not around now. A new friend called Freya surfaces now and again, who seems to have a bit more gumption than her predecessor and will chat and even argue back with my daughter when she’s wrestling with some little worry or problem, or needs a bit of moral support.

As she makes her way through life, I look forward to meeting more of my daughter’s special friends. The fact that a girl with Prader-Willi Syndrome - which usually involves a very rigid, black-and-white way of looking at the world - has managed to conjure them up from her imagination, to make herself feel better, is quite an achievement.

Video is Lloyd Cole & The Commotions - Brand New Friend

Locked

"Quavers are better than Skips which are better than French Fries which are better than Monster Munch which are better than Walkers which are WAY better than Kettle Chips.
Mini Milks are better than Twisters which are better than Fabs which are better than Fruit Pastel lollies which are better than Calyppos but STEER CLEAR of Magnums.
Mini Jaffa Cakes are better than a box of raisins which is better than a Go Ahead Yoghurt Break which is better than an Alpen Bar but don’t even THINK about a Mars Bar.
Chips are bad. Cheese is evil. Fruit is my friend."

This isn't an actual quote from my daughter. But I'm pretty sure it's what runs through her head. (Well maybe not the 'cheese is evil' bit). The gospels according to calories and saturated fat content are somehow drummed into my daughter’s very soul. She’s spent all her life having her food controlled, as she needs a strict, low-fat diet to maintain a normal weight. 

At the moment, on the very rare occasions she is offered something she shouldn’t be offered (at a new hairdressers, where they give kids who have a haircut a sweet, or when a new classmate brings in choccy bars to hand out on their birthday), it’s HER that declines.

“I’m not allowed that,” she’ll say. For a girl who’s always physically hungry, this is pretty impressive.

She will twig. One day. It will suddenly hit her that by keeping quiet she could get extra and no-one would know. She will realise that sneaking into a kitchen cupboard and nabbing some grub, then trotting off to scoff it out of sight, just might work, dammit.

I’m dreading it. 
But I’ve got a pack of locks ready.

Video is Crowded House - Locked Out

School

A new term starts tomorrow at a new school.

She was at mainstream at first, but will now be going to her second different Special School. Along the way there have been SENCOs, IEPs and SSENs, and more BCAs than I care to remember.* 

(*Special Educational Needs Co-Ordinators, Individual Education Plans, Statements of Special Educational Needs and more Bloody Confusing Acronyms).

It seems a long time since I walked my daughter to the school gate for the first time. It is a long time - eight years to be precise.

I will never ever forget being able to do it. After the trauma and terror of her being diagnosed with Prader-Willi Syndrome, and the physio, speech therapy, hospital appointments, injections, and general hard slog, here she was. Walking - no skipping - into school.

I cannot begin to convey how relieved and proud I was.

Well actually, I can. Just look at my face.

Video is Creedence Clearwater Revival - Proud Mary

Swapsies

My daughter struggles with the concept of swapsies.

It’s an easy thing for me to understand. I’m not saying I was completely obsessed with World Cup football sticker collections as a kid, but my mate did once decide to nickname me Queen Panini.

So to me, swapping those two extra Kenny Sansoms for the Trevor Francis you needed to complete your Espana 82 England Squad made perfect sense.

Not so to my girl.

Yesterday, she finally completed the local library’s Summer Holiday Reading Scheme (no mean feat, as it involved reading 18 books). The theme this year was Circus Skills and included lots of little rewards as encouragement (a certificate, a wristband, stickers, a medal, and some Top Trump-style playing cards featuring cute monsters called Circus Munglers).

The helpful librarian had told us to pop in between 10am and 10.30am to collect her final prizes, as they were holding a Munglers Swapsie Session.

“Brilliant! You can get rid of some of your duplicates,” I told my daughter.

“But they’re mine. I got those cards for reading my books,” she said.

“Yes, but you can swap them.”

“But I want to keep them.”

“Yes, but you’ve already got more than one of them.”

“But that’s because I got them for reading my books.”

“Don’t you want to get all the characters?”

“Yes.”

“Well, you’ll have to swap them, then.”

“But they’re mine.”

After about 35 minutes of this going round and round in circles, I finally got her to understand that this was a way of completing her set and letting someone else complete theirs, AND MAKING EVERYBODY HAPPY, OK?

So we went to the library.

She took her cards.

And no other bugger turned up.

Video is Aretha Franklin - Share Your Love With Me

Language

It may be an international language, and I can certainly eff and jeff with the best of them when the mood takes me, but I do have my limits.

The line I won’t cross is this: I don’t swear in front of my mum and dad, and I don’t swear in front of my kids. Apart from when I do the odd monumentally stupid thing like dropping my car keys down a drain, obviously.

Now, I’m not an idiot. I know that my daughter encounters some fruity bon mots when out in the big wide world - say, for example, on the Special School bus packed with older kids with various levels of emotional and learning difficulties. But I take pride in the fact that she doesn't repeat them. 

Or so I thought.

Child Two (nicknamed Cato, for his interest in suddenly jumping on people in the manner of Peter Sellers’ trained surprise assassin in the Pink Panther films) was having a particularly boisterous day. And after one too many instances of him leaping on her and wrestling while she was trying to read, my daughter’s patience snapped.

Sitting over the other side of the room, out of view, I heard her utter the following phrase, perfectly enunciated, perfectly stressed, and, grudgingly, I have to admit it, perfectly sworn:

“Oh for F**K’S sake!”

I nearly fell off my chair. Spotting my husband’s shoulders go up and down as he tried not to laugh at the utterly bizarre sound of our sweet daughter somehow managing to swear brilliantly in context, I fled the room, in order to compose myself, covering my parental duties by saying, as I went: “You are in so much trouble, young lady. I’m so angry I can’t talk to you about it until I’ve calmed down.”

By the time I’d swallowed my giggles and returned, my uncharacteristically potty-mouthed daughter was in floods of tears. Before I could utter a word, she turned to me, looking stricken. “I swore Mummy,” she sobbed. Then confusion and panic set in. “Did I swear? I didn’t swear, did I? I did. I did swear.”

I then watched, in a kind of awestuck amazement, as my contrite child, so mortified by her own use of a really bad word, proceeded to tell me she should not be allowed to go to Guides that night, and then concluded her guilt-ridden, self-inflicted punishment by sending herself to bed.

Video is Super Furry Animals - The International Language Of Screaming