Shoeballs

Shoe shopping just isn’t my thing. Let me loose with £20 quid in a second-hand record shop and I’m happy. When it comes to shoes, however, I don’t know my Blahniks from my b*llocks. Metaphorically speaking. (And I had to look up how to spell Blahniks).

This is why I needed to enlist some help yesterday. My daughter is all set to be a bridesmaid at my cousin’s wedding in a couple of weeks, so she needed some shoes to go with her gorgeous dress. So I called in a  professional. A brilliant friend of mine who owns a ridiculous number of shoes. (Her obsession is worrying, profligate, and unhealthy, unlike my music fetish, which is comforting, excellent value and good for my soul).

The shoe guru and her cute little sproglet accompanied my daughter, my son and me to an anonymous retail park, where she assertively cut swathes through the ranks of shoppers, sorted my girl out with some splendidly smart shoes, and miraculously kept my littlest’un in check as she did it. We left, triumphant. I even managed to time it so I was paying at the till when all three kids needed the loo, so she sorted that as well. Now that’s what I call shopping.

So I had a happy girl on my hands last night, and as that’s the general aim in our life, things were looking good.

Then we had a little problem. It was spaghetti and meatballs for tea, thanks to a ‘here’s some I made earlier’ scenario. I plated up a meal for my husband, as he was out on a rare jaunt to watch the rugby with some pals. I left his dinner on the worktop, intending to put a cover on it and pop it in the fridge when it had cooled down, and the rest of us got stuck in.

A few minutes later, my attention was focused on my little lad, who had finished his yoghurt and fruit before my daughter had meticulously ploughed her way through the main course. I wandered into the lounge with him to set a DVD going to keep him happy and left my girl alone in the kitchen. I know, I know, anyone with a child with Prader-Willi Syndrome is now hearing air-raid klaxons and saying: “You did WHAT?”

The upshot is, when I wandered back through, my spider sense tingling because it had gone AWFULLY QUIET, my girl was standing by the worktop looking guiltier than the leader of the Red Hand Gang being caught red-handed stealing a red hand from a red hand shop.

I looked at her dad’s dinner. Which seemed considerably smaller than it had been. 

“You’ve had your dad’s meatballs, haven’t you?” I said. She nodded. 
“I can’t believe you’ve done that. You know better than that.” I said, with what I hoped was a withering stare.

It was. She withered. Her face crumpled. 

“I’m sorry, Mum. I couldn’t help it. It was an accident,” she muttered, staring at her toes. As much as I wanted to believe this, I realised the likliehood of her tripping and landing face-down in a plate of meatballs, tipping the plate at the exact angle so they would roll down her throat, was not high.

She was pretty mortified by her own actions. She’s quite proud of the way she tells people what she’s allowed to eat and what she isn’t, and we’ve been amazed at her willpower and her normally good behaviour around food.

But I think we might have been getting a little smug about it. A little complacent. She’s growing up and becoming more independent, and her hunger is as all-encompassing as ever. Now she is realising she could sneak stuff and perhaps get away with it.

Kitchen watch duty is being stepped up. 

Video is Kirsty MacColl - In These Shoes?

Spongebob

The Spongebob diary is a source of great happiness to me.

It’s a notebook (which my daughter decorated herself with a drawing she did of Spongebob Squarepants). It’s filled in every day by her teachers or teaching assistants, who use it to let me know what she’s been up to, tell me about things she’s enjoyed, things she’s struggled with, and any problems that have arisen. They also use it to inform me of any activities coming up which involve food, so I know what she’ll be having and can adjust her snacks accordingly, or provide a low-fat alternative if needed. I reply, and it works well as a quick, easy channel of communication between us.

But it’s the incidental things I like the best.

Here’s a selection (Nanna and Grandad feature quite heavily):

“We were talking about names today, and she said ‘When Nanny is calm, she calls Grandad Mike, but when she’s angry she calls him Michael and he goes in the garden.’”

“We have had strict orders from her to write in her book that she would love a foot spa for her birthday.”(!)

“We are encouraging her to choose something else other than Hello Kitty, which did not impress her much.”

“She was very talkative today and told us some more amusing stories about Grandad falling asleep and spilling coffee on Nanna’s new carpet.”

“We looked at products that change today, and had a bit of messy time with shaving gel. She told us: “You’ll be in trouble with my mum because she’s just washed my jumper.’”

They’re just little snippets. But what I like about them is that I can hear my daughter’s voice. When her teachers describe her day and how she’s reacted to certain things I recognise her personality and her behaviour. She’s being herself; she’s acting in the same way at school as she does at home. I find this hugely comforting. And I’m confident the staff at her school ‘get’ her. They seem to know what makes her tick, which goes a long way towards making things tick along more smoothly.

It's not all sweetness and light. But there’s a phrase that - thankfully - is common to the vast majority of entries: "She had a good day today". It’s a simple sentence. But it’s a damn fine one.

Song is Etta James - In My Diary

Passport

I found this photo in the bottom of a cupboard drawer today.

We had to shift some furniture about in preparation for building work which is due to wreak havoc at our house from next week, and this little beauty fell on the floor.

It was a passport photo we had taken of our daughter at a photographic studio down the road from where we lived, when she was about six months old. We were getting her passport sorted for a holiday in Spain. (I wrote a blog entry last year about our plane journey back - Flight).

I think the photo cost a tenner. Money well spent, I would say. That little bottom tooth has got to be worth that on its own, surely.

I know, and I remember, looking at this photo, that we were stuck in a hinterland of worry and shock following her diagnosis of Prader-Willi Syndrome just a few short months before.

But I also remember that - as her happy nature began to shine through - the foundations of our fierce love and pride were being laid.

I would now like to point out that I would like my builders to use cement, not love and pride, however fierce.

Video is The Foundations - Build Me Up Buttercup

Picnic

A bunch of strangers met in a park today and had a picnic.

It was a small, informal get-together at Hainault Forest Country Park, near Chigwell, organised by PWSA (The Prader-Willi Syndrome Association UK).

Our children played together, had a sing-song, did the hokey-cokey, and had their faces painted. Blow up guitars were strummed. Sparkly microphones were mimed into. Grins were grinned.

My daughter joined in the fun, her initial shyness melting into enthusiasm, as she managed to put me to shame with her firm grasp of the lyrics of “This old man, he played one...”

She had been looking forward to this for weeks, and it wasn’t long before she was asking any child that stepped within a five yard radius of her: a) whether they had PWS and b) how old they were.

My girl was fascinated to see that some children were: taller/shorter; slimmer/chubbier; chattier/quieter; friendlier/shyer than her. Some were in wheelchairs, some were skipping around. It was the first time she’d seen as many people with PWS in one place (I think, if I counted right, there were eight). They were, of course, as different as they were alike.

She's all tucked up in bed now: her face-paint washed off and the excitement over. In the brief few seconds between my shattered girl's head hitting the pillow and her being out for the count, I asked her what the best bit of the day had been. She told me, of course, that it was the picnic. (Food comes first - it always will). But then she said her "equal" best bit was having a big cuddle with a baby girl with Prader-Willi who kept smiling at her (see the picture above).

I think my daughter found the whole day kind of amazing.

I did, too.

Video is Sam & Dave - I Thank You, dedicated to Patsy Counsell and all the other lovely people who organised today's event.

Rebecca

My skin is still tingling from the contrasting emotions that surged through me when reading this story.

It’s about a 20-year-old girl called Rebecca Ling, who has Prader-Willi Syndrome.

She’s been chosen as one of the 8,000 people who will carry the Olympic torch as it travels around the country in the lead-up to London 2012.

This is a brilliant thing.

But the story wasn’t an easy read. As my eyes scanned it, I pulled up short, the adrenalin rushing to my head, not realising what it was I was feeling. And then I recognised it: fear.

Rebecca was left paralysed six years ago, after an operation to correct her scoliosis went wrong. My daughter had the same operation when she was 10. And the doctors told us that paralysis was a risk, because they were working so close to the spinal cord. We were lucky that everything went smoothly, but just reading about this outcome transports me back to the hospital waiting room and the moment her consultant reappeared after an eight hour wait. There was that split second - a miniscule amount of time - before he smiled and told us she was OK. 

Rachel’s parents didn’t get that message. 

“Thank God that didn’t happen to my girl; thank God that didn’t happen to us...” I thought. And then the blood rushed back into my face, as my fear turned to shame. What was I thinking? As I leapt to conclusions about the ‘quality’ of Rebecca’s life, was I doing what I hate other people doing? Pitying and condescending a person who I had never met and had no right to have an opinion on or even begin to understand how they live and enjoy their life?

The most telling part of the article for me was the following three lines:

The Chelmsford College student said: “I’m very excited to be taking part.

“When I found out I went straight on Facebook and told all my friends.

“I think it’s going to be fun.”

And that’s when the tears came. And a big smile. Rebecca was going to have an amazing experience, and her first thought was to update her status.

That wonderful everyday banality is the flame that burns brightest for me. I’ll cheer you all the way, Rebecca.

Video is Laura Viers - July Flame

Dam

It was stormy here last night.

I wrote about my daughter’s ‘waves’ previously. They’re when tears come flooding out in a sudden rush, as if she’s suddenly been caught by onrushing water at high tide.

She’d not had one for while. Last night, the dam burst and she had seven. Nothing could console her. It was the middle of the night before she finally fell asleep. All this woke her brother - who’d taken some serious coralling to get to bed - and who seemed to think it was morning already.

I don’t always find out what causes a wave. But at 1.45am, when the tears finally dried up and the tide went out, my girl whispered something to me.

“I don’t know what plate to have at Nanny’s tomorrow.”

So it seems that the emotional meltdown may have been caused by this: My daughter has a treasured Tracy Beaker plate, which she eats all her meals off. For Easter I bought her a Hello Kitty plate, which is now her new favourite. Or so I thought. It looks like she’s torn between which she likes best. And last night, that was enough. Her sleepy little brain got stuck on a choice, and it caused a crisis.

“Is that what the matter is?” I asked her, sitting on the edge of her bed, our conversation lit by the flickering light from her fish tank.

She nodded.

“Shall we take both plates with us, and then you can choose when you’re there?”

She nodded again. And rolled over and went to sleep.

Video is Lee Dorsey - Tears, Tears And More Tears (thanks to @twrafferty for introducing me to this track)

Inigo

There's a scene near the end of the splendid fairytale film romp The Princess Bride where a swashbuckling character bent on revenge repeats his catchphrase over and over again.

The ridiculously-named actor Mandy Patinkin confronts Christopher Guest, who plays The Six Fingered Man - the villain he has been searching for his whole life.

"Hello, my name is Inigo Montoya. You killed my father. Prepare to die!" Mandy growls, in a cod Spanish accent. "Hello, my name is Inigo Montoya. You killed my father. Prepare to die! Hello, my name is Inigo Montoya. You killed my father. Prepare to die!"

"Stop saying that!" pleads his over-generously-digited foe.

It was at this point yesterday, when we were watching the film for the what must have been the 50th time, my daughter turned to me, shaking her head and smiling ruefully.

"God, he doesn't half go on! He's said it once, he really doesn't need to say it again and again, does he?" she said, looking at me askew.

Now my girl is a world-beater at repeating particular phrases ad infinitum. And she knows this, because even as she does it she'll occasionally interrupt the flow to tell herself she doesn't need to keep saying what she's saying. And then she keeps saying it.

When I giggled, she giggled back, and started parroting the Inigo Montoya phrase.

Her brother and her dad were hiding from dragons under a blanket in the little lad's bedroom. So we crept upstairs, and whipped the blanket off. The slightly startled but amused pair listened dutifully as she performed the line. More than once, obviously.

Small pleasures.

Recorded on my phone: My name is Inigo Montoya...

listen to ‘My Name Is Inigo Montoya’ on Audioboo

Video is The Princess Bride - My Name Is...

Song is Gillian Welch with David Rawlings - No-one Knows My Name

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