Chocs

Children with Prader-Willi Syndrome miss out at Easter, don't they?

You can't easily escape chocolate eggs at this time of year, but when you have a child with PWS, whose food intake has to be strictly controlled in order for them to remain healthy, you have to.

A friend of mine had a big Easter party for all our kids one year, complete with an egg hunt. The children were given bowls and let loose in the garden, to hunt down foil-wrapped calorie bombs hidden in the bushes, under patio chairs, up trees and in flowerpots.

I knew my daughter would love this; the hunting bit would be fun. But then, there'd be some eating. And I worried about how she'd feel when the others chowed down on choccy, which she wasn't allowed. She always seemed happy enough with her alternatives when we were at Nanna & Grandad's with her cousins - they'd have their milk chocolate fix, and she'd have some raisins and a Snack A Jack and all would be well. But this would be different. There were going to be a lot of kids getting their chocs off. Would she feel left out?

I came up with a plan. I do this a lot. I saw some sweets for sale in a shop, that came in a hollow plastic egg. So I bought them, selflessly ate the sweets, and kept the egg. This was to be my girl's special Easter Egg. It was duly loaded with no-sugar sweets, breadsticks and other goodies that she was allowed to eat. And when the time came to stash the booty for the Great Egg Hunt, her green, plastic, non chocolate-containing egg was stashed in a flower bed. Mums and dads dutifully whispered in their offspring's ears: "If you find a big green egg PUT IT BACK," and the hunt began.

I told my girl that she had to look for one particular egg, and described it. Off she went, wandering about in amongst the over-exicted rabble of pumped-up sprogs. She picked up a few foil-wrapped Cadbury's eggs and brought them to me in her bowl. "I found these Mum. Can you give them to Hamish?"

The search continued. Finally, after a few "You're getting warmer!"s, she discovered her personal Holy Grail. If you want to know how happy this made her, look at the photo, above. And if you want to know whether it bothered her that she was eating different treats to the others, look at the other photo.

As my girl has grown older, she's got cannier. She's worked out she'll get her normal allocation of meals and snacks at Easter. What she's now learned is that people feel a bit sorry for her not being able to have a chocolate egg. So they buy her something nice instead. A craft set, felt tips, a CD. "They're WAY better than an egg, Mum, aren't they?" she gleefully told me one year.

So this morning, my three-year-old boy was given a Thornton's Football Egg. And my daughter got a Hello Kitty plate, bowl and cup set. Later, she's getting The Princess Bride book, from Nanna & Grandad. Missing out, my arse.

Video is Dylan Hears A Who - Green Eggs & Ham (Thanks to @DaveDogFacedBoy for this)

Basking

A while back, we had a great trip down to London, where my daughter met musician Piney Gir after a free afternoon gig at The Union Chapel, in Islington.

Piney has just written about the 'Daylight Session' show on her blog, where she very kindly gave my girl a lovely mention.

I just showed the piece to my rather thrilled teenager. She stood looking over at the computer screen over my shoulder, reading it out aloud. Then she spotted the picture of her and Piney taken just after the show. She gasped and her eyes went boggly. "Is that me, mum? Am I on a pop star's website?" she asked. Once I'd confirmed this was, indeed, the case, she disappeared upstairs to put Piney's CD on her stereo.

I think what my daughter is doing is known as 'basking in glory'.

Video is The Piney Gir Country Roadshow - Lucky Me

Undateables

Here’s the thing: I don’t often watch documentaries about people with disabilities. Until now, I’ve never really thought about why. It may be because I’m afraid of being hypocritical.

My daughter has Prader-Willi Syndrome, but first and foremost she’s my daughter. It’s part of her and it’s the way she is. As a family we learned to accept it and live our lives. I would hate for her to be judged or laughed at because of PWS. 

So when there’s a TV programme featuring a disabled person, I get a little defensive. Are they going to be treated with respect by the programme-makers? Are they going to be a figure of fun, an oddity, someone ‘other’ served up to fascinate or titillate? 

Of course, here’s where the hyprocrisy sets in. Sometimes, living with someone with a disability is funny. Their obsessions, or idiosyncrasies can make you laugh as well as cry.

And I’ll relate those moments to friends and family, and hell, to anyone who stumbles across this blog. But when I do this, am I not serving my girl up as ‘entertainment’ in the same way?

It’s Channel 4’s The Undateables that’s set me thinking about this. The first show in a documentary series following several people with a range of disabilities who have signed up to a dating agency was aired on Tuesday night. The 'subjects' are interviewed about their quest to find love, and the film crew follows them on their dates. 

I caught up with the show on 4OD today, having originally avoided it after seeing a barrage of tweets on Twitter containing the hashtag #undateables. They scared me off, ranging, as they often do, from kind, and well-meaning, to patronising, insulting and hateful.

I’m still undecided about it. I think it had a good heart. And yet on the other hand, this annoying voice from the pitch meeting kept popping into my head saying: "Yeah, look, it's, like, people going through exactly the same emotions as other lonely people looking for love, and getting all nervous and stressed about a date, only, like, more so, yeah, because they're, like, disabled."

However, my opinion kept flip-flopping.

There were two moments that stayed with me.

The first involved Luke, who had Tourette’s, and was warm and funny, with good social skills (apart from his loud tics, which included the phrase: “I thought she was a lovely girl.....f*cking slag.”) The look he gave immediately after he said this was quite profound. With just the raising of an eyebrow, you could see that he knew it was funny, he knew why it was funny, and yet at the same time you could see that after 10 years of this happening any time he got near a girl he liked, it really wasn’t funny at all.

The second came from Richard, who had Asperger's. I saw some of my daughter in him. He was very set in his ways and got agitated when things didn't go exactly to plan. He was able to chat and interact with the cameraman and with even with his date, but his conversations and interactions were slightly off-kilter. He was wired differently. He described the effect of unexpected changes on his  'Asperger's mind': it would only bend so far before it would snap.

So how did The Undateables make me feel about my daughter? 

She's 13. She’s started talking about how she’d like to get married. I’m gripped by fear when I think about the practicalities of her having a boyfriend, let alone the emotional aspects.

But it would be wonderful for her to find love. Like the parents featured in this programme, and - let’s face it - like anyone’s parents, the main thing you want in life is for your child to be happy. 

So I’m going to watch next week’s episode, and meet a few more of the #undateables. And maybe it will do some good and open a few people’s eyes up to the fact that people with disabilities are different from us and yet just the same as us.

Two things, though. I can’t bear that plinky plonky ‘comedy’ melody used on the soundtrack. This isn’t exclusive to documentaries on disabilities, but it adds a little note, or a few little notes, of condescension.

And The Undateables? I know they need a snappy title, but it was too flippant and cruel for the show that followed it. Mind you, I can’t think of anything particularly clever, or effective.

Maybe Dateability, instead? You see, that right there, is why I’m not a TV producer.

Video is The Yeah Yeah Yeahs - Date With The Night

Magazine

Sometimes my life resembles a sketch show. It’s a series of skits, complete with bad hair and repeated catchphrases.

Yesterday, we popped into the newsagent's to buy a magazine for my daughter and her little brother. The toddlinator spotted a Spiderman comic which came with a free gun, so that was him sorted. (I know, I know. It’s little wonder he’s a two foot tall ball of violence).

My daughter, however, struggled. When faced with too many choices, her brain starts to race, and she begins to panic. 

“They haven’t got a Hello Kitty one, Mum,” she said, her voice tinged with alarm.

“That’s OK,” I said, in my best calm and measured tone. “If there’s nothing you want, then I can give you your money for your money box and you can put it towards something nice.”

She considered this, turned away, and started rifling through the rack again.

I repeated my offer a couple of times, and I could see she was torn. She was shooting sidelong glances at her brother’s magazine, so I patiently explained that I would be giving her and her brother exactly the same amount of money, and that it was just that she would be saving it and he would be spending it.

Time passed. I give her a deadline. The deadline passed. My boy was getting itchy feet.

“Choose one now if you really want one, but don’t get one for the sake of it !” I warned. “Are you sure that’s the one you want?

She nodded, grabbed an I Love Ponies magazind (£3.99, for Shergar’s sake!) so we headed to the till. 

I checked again: “Are you absolutely sure that’s the one you want?” She nodded, solemnly. "I want that one."

We paid, left the shop, and walked back to the car. Just as she was about to get in, my girl looked at me, looked at her magazine, and declared: “Don’t like it.”

Lou and Andy, from Little Britain. That’s who we are. 

Video is an excerpt from Little Britain

Video is Lou Reed - Andy's Chest

Christening

My daughter announced a few days ago that she wanted to be christened.

She did this rather pointedly, in front of my churchgoing mum and dad. I would have struggled to get her to change the subject had it not been so close to tea-time. A quick: “What would you like in your sandwich, darling?” did the trick.

You see, I don’t really want to get her christened. Because I don’t believe in all that ‘magic being’ stuff, the idea of it makes me squirm.

We do do God in this house a bit. We talk about people going to heaven, even though I think it’s ridiculous, and my girl goes bananas for the story of the Nativity, but she’s a child. She likes God and baby Jesus, in the same way she likes Father Christmas, and I’m not mean enough to break the spell for her.

This makes me a hypocrite, of course. I fully admit this. I got married in church, not because I needed to declare my love for my husband in front of an imaginary omnipotent entity in the sky, but because I knew it would mean a lot to my mum. I said so in my speech at the reception, in fact, telling the guests I’d agreed to get married in church as long as Mum agreed to cook me Sunday dinner every week until she dies. (16 years on, that deal is still a stroke of genius on my part, I can tell you, although I have a feeling that after this blog entry I might have to dust off my roasting dish).

I have also stood up in church on more than one occasion, when taking on godparenting duties for family members and friends, and renounced the Devil. I squared this with myself by looking up the dictionary definition of ‘renounce’ and decided I could live with 'giving up or refusing to obey or recognise' a red, horny man with hooves.

But my daughter’s interest in being christened got me thinking. Should I do it for her? If it’s something she really wants, should I swallow my pride and logic and get happy clappy for her sake?

My answer came today, when my daughter came back from a school visit to a gurdwara in a nearby town. Still buzzing with excitement after her look around the Sikh temple, my daughter explained that her religious plans had changed.

“I’m changing over, Mum. I don’t want to be christened. I’m going to be a Sikh. I want to be baptised in a gurdwara. I wrote it in my thankyou letter.”

I managed to maintain a straight face.

“So what made you change your mind? Why?”

She looked at me and beamed.

“Because I love curry.”

Video is Elvis Costello - Beyond Belief

Urge

My daughter is now a whistle-free zone.

You may recall that she has had a Roger Whittaker Simulator strung round her neck for years. (See previous post Whistle).

People with Prader-Willi Syndrome can be prone to skin-picking, but in my little girl's case, fiddling with and feeling the string and the metal clasp of the whistle with her fingers seemed to negate the urge to pick.

But her teacher recently suggested to her that she might be able to get on with her schoolwork much faster if she put the whistle away for a while. And because this appealed to my girl's desire to 'keep up' and achieve tasks she's been set, she tried it. A short while later, she decided herself that she didn't need the whistle at break times or lunchtime, either. And now she's ditched the thing at home, too.

I wondered if self-imposed cold turkey might have some side-effects, and it has. The whistle-fiddling has been replaced by a nervous tap, tap tapping of her forefinger on her teeth, followed by three strokes of her finger on her tongue. The number of taps vary, but it's always three touches on the tongue.

Interestingly, she seems to be aware of this new habit, and is trying to talk herself out of it. I mean this literally: she's having regular loud and intense debates, answering back in a two-way conversation with herself, about how she needs to stop the tapping because 'big girls' don't do that.

So I'm waiting to see what'll happen if she does manage to persuade herself to stop.

Because if she does squash the urge, I've got a feeling it'll pop up somewhere else.

Song is Syl Johnson - I Feel An Urge

Dates

Today is a special date.

A lot of women have them. More than you think, in fact. We don’t normally mention them. But you know me. Never knowingly undershared.

Fourteen years ago, March 21 was a good date. A momentous date. It was a day something amazing was going to happen. I was pregnant for the first time, and this was my due date.

I lost the baby at 9 weeks.

Don’t worry. I’m not going to go all mushy and sentimental. I’m not one for all that stuff about little angels in heaven, although if it helps other people, good luck to them.

Because my baby wasn’t really a baby. It was a collection of cells. A bundle of tissue. But our love and excitement was wrapped up in that DNA and losing it was a real shock. It was a physical blow. After the D & C, I felt hollow and sad and angry.

Pregnancy was never the same after that. It was always underscored with fear. 

I was terrified during the  initial stages of my pregnancy with my daughter.  Once the scan went OK, I managed to calm down and settle into a bovine state of gestation. Once she was born, and she was diagnosed with Prader-Willi Syndrome, the fear came back. Something had been wrong after all, you see. I was stupid to think it wouldn’t. This is what me and pregnancy was like. We didn’t mix well.

Events continued to prove me right. I had a ruptured ectopic pregnancy and lost a tube, and another miscarriage that involved going back again and again for ultrasound after ultrasound until they told me there was no heartbeat after all.

To this day I can’t bear those scenes on the telly and in films when they rub the jelly on the woman’s pregnant belly, and stare at the image, smiling and getting teary-eyed at the sight of their tiny baby.

Everything about it takes me back to the times I’ve spent in the Early Pregnancy Unit looking at the blackness and wishing I could see that tiny rhythmic blip of a heartbeat, my husband holding my hand and not knowing what to say or do to make it better.

So today, I’ll just spend a minute or two remembering and wondering what that little bundle of cells might have turned into. And I’ll do it again on November 21 and on December 26.

And maybe I will get mushy and sentimental after all and give my two children a few extra hugs and silently thank them for being tough enough to stick around.

Video is Echo & The Bunnymen - Nothing Ever Lasts Forever