Clocks

I am defying Time. I am laughing in Time’s face. I am cocking a snook at Time. I can manipulate Time. I am a Time Lord.

You cannot and will not blame me for this.

You try getting a slow-moving, fiercely independent teenage child with Prader-Willi Syndrome ready for school at the same time as your fiercely independent two-year-old - who is very fast-moving, but in all the wrong directions.

I made a bit of a misjudgement back in September, when my daughter started her new school after we moved house. Previously, she had to get up at 6.45am to be ready in time for the Happy Bus to pick her up. It was an early start because she was furthest away and therefore first on and last off.

Here, in our new home, we live just half a mile away from her new school. So she gets a little lie in.

I worked out that 8am would be the perfect time for her to get up and do what she has to do: laboriously make her cereal ‘mix-up’ and a slice of toast, clean her teeth, get dressed at snail’s pace and stroll the short distance with me to school. Factored into this is her little brother’s zig zag route on his scooter and tendency to stop to throw stones in every puddle and drain.

I was wrong. This is the perfect time only when my husband is also here, giving us two pairs of hands wrangling the wayward kids. When his work shifts mean it’s just me, it falls short. By about 15 minutes.

I explained this to my daughter, and suggested she needed to get up a quarter of an hour earlier.

She wasn’t having it. “No. You said 8 o’clock. I get an extra hour in bed, you said. I want to get up at 8 o’clock.” Her heels were not so much dug in as concreted. 

I tried to explain that 8 o’clock had been giving her an extra hour and a quarter in bed, and the new getting-up time would still give her an hour. But she’s not that great at half hours or quarter hours. She had picked and mixed her analogue and digital times in a combination that had bamboozled her. She couldn’t understand and refused to believe that 7.45 is an hour later than quarter to seven. She wanted that hour, and she didn’t think she was still getting it.

So I fixed it.

Now, I get up, turn forward the hands on the kitchen clock by 15 minutes, and lie about the time.

Video is Gillian Welch - Revelator 

Days

I’m really enjoying writing this blog, digging through my photo albums, shaking up the memory banks for the old and rushing to the keyboard to record the new.

Last night, I looked at the stats and saw that the blog had passed the 10,000 page views mark. In the grand scheme of internet traffic, that may not sound impressive. Well, to me, those figures mean an awful lot.

It means that more people know about Prader-Willi Syndrome. Hopefully, it means that I’ve been able to explain a little about what life is life when you live it with a disabled child. I’ve tried to be realistic and not soft-soap the bits that are hard to bear. But I’ve also tried to highlight the bits that are hard to beat.

I’ve had a few parents of children with Prader-Willi Syndrome contact me to say they’ve found A Drake’s Progress useful, and that they don’t feel like they’re the only person going through what they’re going through. That’s the best feedback of all. I wanted to write something that was informative, but that dealt more with how it feels to live with PWS, rather than concentrating on detailed medical nuts and bolts. (Although, come to think of it, Straight - a post about my daughter’s spinal operation - did actually mention medical nuts and bolts).

So thanks again for clicking your way here. I’ll keep doing it if you keep doing it. And maybe even if you don’t. Talking to yourself is underrated, and much misunderstood, in my opinion.

Today’s music had to be a 10,000 Maniacs song. (It was either one of theirs, or posting Tenpole Tudor’s Swords Of A Thousand Men ten times, and that was just too much effort).

These are days
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you’ll know how it was meant to be
See the signs and know their meaning
It's true
Then you’ll know how it was meant to be
Hear the signs and know they’re speaking
To you, to you
10,000 Maniacs - These Are Days

Book

PICTURE: Some of the Makaton symbols we used with our daughter

It’s hard to believe now - particularly on a day when my daughter tries out the ancient form of torture on me known only as Death By A Thousand Questions - but she had trouble speaking when she was little.

Prader-Willi Syndrome comes with a whole bundle of symptoms, one of which is hypotonia (low muscle tone). This can affect speech, as you need good control of your jaw, tongue, lips and palate to be able to speak clearly. (By the way, if you’d like me to, I can accurately demonstrate how a lack of muscles in this area can affect speech and cause unintelligible slurring - all you have to do is feed me a bottle of red wine).

When my daughter learned to speak, it wasn’t just physical hurdles she had to overcome. With a learning disability, she also needed more stimulation and tricks and techniques to encourage her understanding of language.

So my girl, already quite the social butterfly with her visits to her paediatrician, endochrinologist and physio, had to make room in her diary for speech therapy. And we all had to learn Makaton. 

I’d never heard of it. Annoyingly, though, every time someone mentioned this new word, all I could hear in my head was the music from that washing machine ad: “Ariston...and on...and on...”

Makaton turned out to be a kind of simplified sign language for children and adults with learning difficulties. It used hand actions and pictures to encourage speech.

I couldn’t get my head round it at first. How was using a sign to express what you wanted going to help you talk? Surely it would actually replace the need for talking?

I didn’t understand. And for a few months, after learning simple signs and pointing to symbols when we talked to our daughter, it didn’t seem like it was having the desired effect.

But of course the specialists knew what they were doing. They’d drummed it into us: don’t use the symbol without saying the word. So we didn’t. And although we started to feel like we were wasting our time, we persisted, and our daughter quietly took it all in. 

Then one day, she uttered her first word. Or rather her first part of a word.

She placed her palms together, and then fanned them open, looking up at me as she did so, saying: “Buh...buh.” She’d mimed the Makaton sign and sounded out loud the first syllable of her first word - book.

Video is the Ariston advert from 1987

Video is 60ft Dolls - Talk To Me

Tag

There are some people in this world who have to put up with a whole lot of wrong.

I don’t mean those unfortunate souls forced to listen to Heart FM in the workplace, although God knows, Amnesty International should be called in to save them.

I’m talking about people who are on their own and who look after disabled children.

I’ve got a fairly long fuse, and my husband is a reasonably mild-mannered chap, apart from when tackling DIY, when it’s best to leave the house, if not the country. But we're not the most patient people in the world.

So we’ve got a kind of tag-team thing going on, a bit like the old Saturday afternoon wrestling on ITV. We don’t wear the leotards - no-one deserves that - but we do swap over and climb into the ring when the other is on the ropes.

If our daughter is having a day when she’s asking the same question over and over again (see blog entry Perseveration), or if her stubborn streak is not so much streaking as stopping, digging a trench, and building foundations - it’s a hell of a lot easier for two to deal with.

The general level of frazzledom goes up into the red when one of us is working. But the needle drops right down when Big Daddy and Giant Haystacks (I haven’t got the beard) are both available and on the case. Oh, except when our psycho toddler puts on a Cyberman mask and jumps us from behind, like a miniature Kendo Nagasaki.

So I know how hard it must be for people who don’t have a partner. Whose wrestling buddy has buggered off.  And they do, you know. Years ago, a very nice woman who used to come to our house once a week to do physio and stimulation with my tiny, new, disabled daughter, happened to mention that about a third of all ‘her dads’ had slung their hook. A third of the families she visited had basically seen the father of the disabled child say “Thanks, but no thanks. I never signed up for this. I’m off.”

I can understand that initial fleeting urge to run away from everything when your child is first diagnosed with a disability. I know the panic, anger and fear. But I also know the next urge that kicks in. The animal instinct to protect your child. Their extra vulnerability only makes this feeling stronger. The idea of one of you abandoning the other, when you most need eachother’s strength, chills me.

So, I thank my lucky stars for having the opportunity to tag.

And I also have a request for any of you who have friends or family who are coping with kids - disabled or otherwise - on their own. Could you maybe step into the ring? Offer to babysit. Pop round to help at tea-time. Give their parent some space. Take the nipper out for the day. They will cherish even the smallest respite.

It doesn’t matter what the parent does with their temporary freedom. They can go off to the cinema, or to evening classes, practise the guitar, or even learn to wrestle. What's important is giving them the chance to do it.

*Video is Half Man Half Biscuit - Everything's AOR.

"She’s the main man in the office in the city

And she treats me like I’m just another lackey

But I can put a tennis racket up against my face

And pretend that I am Kendo Nagasaki"

Pearl

There are two boys in my daughter’s class at her Special School who share a similar condition. They're on different points of the spectrum, but they tick the box for the same well-known, developmental disability.

“Ryan and Sam have the same thing, Mummy,” my daughter informed me, looking quite pleased with herself for being able to share her expertise.

She continued. “You know, where they struggle."

"Struggle with what?" I ask her, trying to get her to elaborate.

"You know. When they don't know about feelings. That thing you were telling me about.”

I nodded, remembering a little talk we’d had a few weeks back.* (*see blog post Spectrum).

“Yep,” she said, beaming. 

“They’ve both got oysterism.”

Video is The Blue Autistic - sorry - The Blue Oyster Cult 'More Cowbell' sketch from Saturday Night Live 

Teen

My daughter is 13 years old today. My sweet, odd, wonky, wonderful daughter is a teenager.

She's not your typical teen:

• She still believes in Father Christmas
• She asked for a Tinkerbell duvet cover for a present
• She never really wants to stay up past 8.30pm
• She's never been allowed out of an adult's sight on her own
• She's not got a mobile phone
• She hardly ever answers back
• She thinks Doctor Who is just about the monsters
• She doesn't do status updates, texts or messaging, although she does send emails on her iPod Touch, at a rate of about one paragraph per 20 minutes
• She's never got drunk on alcopops in the park
• She always eats everything on her plate, even Brussels sprouts
• She keeps her bedroom very tidy
• She still wants to hold your hand when you walk down the street.

It's been interesting getting from Ground Zero to Teen Queen.

I've a feeling it's going to be even more interesting getting from here to her 18th birthday.

Bring it on.

Video is a Kevin & Perry clip from the Harry Enfield show

Video is Teenage Fanclub - About You

Friend

Making friends is something kids are really good at. It’s something they learn instinctively.

If you watch a bunch of children who don’t know eachother start to play together, you can see it happening naturally. Small tots will briefly check eachother out, and think: "You’re about the same size as me, let’s chase". Or in the case of my psycho son: "You're slightly smaller than me, I'm going to hit you", but he's not really a very good example.

Making friends when you’re a bit bigger needs a few more skills. You’ve got to be able to gauge how the other person is feeling. Ask them something about themselves and listen to what they tell you. Share some of your experiences with them. Be kind. Notice subtle facial signals and voice inflections.

My daughter has always struggled with this. When she was tiny, she played along with others. But the older she got, the more she always seemed to be on the periphery. Particularly in large groups of children. She didn’t really understand how it all worked. She’d be at the edge of the playground, watching, or sitting on a bench, her head down, chatting to herself.  At parties, she’d dance on her own. She’s always existed in her own personal bubble, cushioned and separate. It didn’t seem to upset her, overly. It was just her. The way she was. I often found it hard to watch.

But recently, she’s begun to get it. At special schools, they work hard on improving children’s social skills, and teaching them how to relate to one another. And I think, at long last, some of it is sinking in.

This week, she’s made a friend.

She told me all about Bethany, who she’s met at her new school, and bonded with over a shared love of Animal Hospital toys. She's talked about her pretty much non-stop, and also spent two evenings making numerous invitations for her to come to tea. This was all off her own bat. I was only there to help when it came to one question, the poignancy of which escaped her, but hit me, full-on.

"Mummy, how do you spell 'friend'?". 

I bumped into Bethany’s mum at the school gate and I told her how unusual it was for my girl to take the initiative, and how great it was that they were getting on so well.

Behind us, my loner daughter and her new friend were ambling along, deep in conversation, chatting away like old war buddies.

Bethany is coming to tea at our house on Thursday. This makes me quite extraordinarily happy.

Video is Flight Of The Conchords - Friends