Monday 31 October 2011

Links


Twitter isn’t just about what you had for dinner. (Although, of course, if it was, it wouldn’t seem inconsequential to me. Having a child with Prader-Willi Syndrome means life *is* mainly about what you had for breakfast, dinner or tea).

I go on Twitter to let off some steam, chat about music, crack a few jokes and enjoy the warmth, humour, silliness and intelligence of a bunch of people I’ve chosen to follow.

I don’t tend to mention Prader-Willi Syndrome much on there, as it’s enjoyable to have a separate space where I can be a grown-up but leave behind some of my grown-up responsibilities.

But I do tweet links to new entries on this blog, which people can click on to read if they’re interested, or move their mouse on past if they’re not.

And this is how something quite brilliant happened yesterday.

A Twitter friend read A Drake’s Progress. And realised, very quickly, that he had a real life link to my link. A close friend of his, also on Twitter, happened to have a toddler with the same rare chromosome disorder as my 13-year-old daughter.

So, with a little bit of planning, we made a small detour when visiting family up north this weekend, and popped in for a cuppa and a chat so our children could meet. 

Hugs were involved. As were questions.

My girl, who is completely fascinated on the rare occasions she meets someone with the same condition as her, began The Spanish Inquisition: “Did he have trouble feeding like me? Did he cry when he was a baby? Will he like the special snack Mummy has bought for him?”.

The little boy's parents answered all the questions happily. (A good job, really, because my daughter probably would have refused to leave until they had). And for their part, they had the chance to meet a 13-year-old girl with the same unusual DNA as their tot, and ask her (and me and her dad) questions about some of the things she did.

It was great.

It was great to meet someone without having to explain your child’s medical condition, for once. It was great to speak to someone who just knows some of the feelings you’ve gone through, you’re going through, and you’re facing in the future.

And it was great to share experiences and chat about our kids, who are so different from other people’s children, and then again, really aren’t.

So, the next time someone moans about the inanities of Twitter, give ’em a slap. Tell them sometimes it weaves a little magic.


Video is The Beloved - Hello

Saturday 29 October 2011

Hallowe'en

My family's true feelings about Hallowe'en
We're going to a Hallowe'en Party tonight. My brother-in-law got married 25 years ago, so it's a spooky silver wedding shindig.

Having failed miserably to sort out costumes in advance,  we've come up with a frankly poor effort, which is basically my husband and I both donning his hi-vis work uniform (he works on the motorways) and slapping on a spot of zombie make up. It could also involve a few judicious felt-tipped tyre-prints across our faces and backs, and maybe the word 'Roadkill' inked on. Drink may be taken, and some moaning, groaning, and stumbling about with our arms outstretched may occur. This last part is no different from most Saturday nights, to be honest.

My daughter, who LOVES Hallowe'en, is wearing a cool, black skeleton dress with neon pink bones on it. My son, who is really not so keen, also has a skeleton outfit. I reckon he'll probably keep the mask on, but ditch the clothes and run round in his nappy, growling, which again, is fairly standard behaviour.

It's great that my 13-year-old girl is excited about dressing up for Hallowe'en. About 'bobbing for apples' (although her version of the game should be renamed 'eating apples'). It's the same with Christmas, Easter, or any other holiday or event that involves games and stories and make-believe (apologies to the religious amongst you, for challenging the veracity of the virgin birth, but come on, really...)*
*Sorry, Mum.

Because of a tiny missing strip on one tiny chromosome, my daughter's childhood has been extended. I don't know how long for. She is growing up, but I don't know how 'grown-up' she'll eventually be. In the meantime, we'll take delight in her delight at childlike things.

Yep. Loves it.

Video is Monster Mash by the Bonzo Dog Doo-Dah Band

Thursday 27 October 2011

Rollercoaster

When my daughter was four, we travelled, en masse, as a family, and we ‘did’ Eurodisney.

We were just like any other family. Sixteen of us. A smattering of surly teenagers, a handful of ecstatic toddlers, a couple of proud-as-punch grandparents, and a few harrassed parents.

My girl was wide-eyed, rosy-cheeked, and excited (See picture. She's the most wide-eyed one with the rosiest cheeks). She’d only been walking for four months, thanks to her weak muscle-tone. It was March, it was sunny and crisply cold, so she was wrapped up tight in her scarf and gloves and hat, riding along like royalty in her outsize buggy.

We’d smuggled in a healthy packed lunch for her, despite the signs warning that you weren’t allowed to bring your own food. (As we suspected, there weren’t any options that didn’t consist of lard-filled fast-food products and chips).

And we’d popped into the customer service hut, and secured a ‘disabled’ pass for her, which I immediately began referring to as ‘The Golden Ticket’ as it allowed us to jump the queue, enter rides through the exit gate, and get on board rides pretty much instantaneously. Oh yes. 

So she tried her first ever rollercoaster.

The lights went off, we rolled forward and plummeted what must only have been a few feet, but felt like a few hundred.

Next to me, in the pitch black, she was completely silent. I had no idea whether she was terrified or struck dumb with happiness.

It turned out to be the latter. As we burst through the doors and hit the sunshine, travelling up in a big arc, I saw her face in the light for the first time. She was smiling the widest smile I’d ever seen. It was the beginning of a proper love affair with rollercoasters and rides. 

But, through no fault of her own, it didn't last.

Three years ago, my daughter had spinal fusion surgery, which meant she no longer had to wear the rigid body casts she’d been encased in all her life. This was momentous, like a prisoner being unchained. We could hug her soft body instead of her plastic armour. She was free and it was a joy.

But it did have one downside. She's not allowed to ride a rollercoaster ever again.


Video is Everything But The Girl - Rollercoaster

Tuesday 25 October 2011

Jamaica

When it comes to music, we’re a bit weird in our house.

We’re a mix of new and old. I’m talking vinyl and digital. An old-school turntable and a new-school Sonos system both running through a glowing valve amp.

But the records only tend to come out when the kids are asleep. In the day, it’s the digital remote, where you can log on to Spotify and choose one of millions of tracks and have it play instantly.

My daughter - despite having a learning disability - has grown up in a world of touch screens and knows how to scroll down and type in whatever track she wants (albeit painstakingly).

This can prove problematic. She rarely remembers the exact title of a song or artist. It’s odd words or phrases. And they’re not always right.

One time she asked me for a song which she could only say had the word “Jamaica” in it.

I wracked my brains. It had to be a reggae track, surely. Then the light bulb pinged above my head -  it was Dreadlock Holiday, by 10cc, which features the lyric: “Don’t like Jamaica, oh no - I love her!”.

Nope. I could see her panic levels rising as she began to realise I might not be able to find the song she wanted.

So I put out an emergency message to my virtual mates on Twitter, a bunch of music-loving people who I felt would have at least a tiny chance of guessing the mystery song my daughter so desperately wanted to hear.

A few suggestions for ska and reggae songs came back, as expected. Then one bright spark came up with a stroke of absolute genius. 

It may have sounded like Jamaica. But the lyric was in fact: "Call me when you try to wake her", from R.E.M. - The Sidewinder Sleeps Tonite. And because of that sideways leap of lyrical logic, I was able to sleep that night, too.


By the way, I realise this post makes me look like one of those parents who try to indoctrinate their children so they listen to the music they themselves like. I’m not. This was rare. Today my daughter wanted to play the soudtrack from Lilo & Stitch (which has in its favour the redeeming feature that it's made up of Elvis tunes) and The Teddy Bears Picnic song. The fact that my 13-year-old daughter has the world of pop music to pick from and goes for The Teddy Bears Picnic warms my heart and breaks it all at the same time.


Video is "R.E.M. - The Sidewinder Sleeps Tonite." In Jamaica, presumably.

Sunday 23 October 2011

Goat

My daughter  is quite clued up about having Prader-Willi Syndrome.

She asks questions about it all the time, but usually when I turn the question back on her she knows the answer.

I’m not overly keen on her propensity for telling complete strangers about how “something went wrong when mummy and daddy made an egg”, but I don’t want to remind her of exactly which roles mummies and daddies have in the producing and fertilising of eggs, as then all she’d do is tell people about the...er...'ins and outs' of her parents having sex. Which I don’t really want to discuss with the checkout girl at Asda, to be honest.

But she understands that she’s got PWS. And that it makes her hungry. And that she has to avoid certain types of food to prevent her getting dangerously obese (or a very fat tummy, in her words).


And I suppose she recognises it in others. Sort of.


Yesterday, we sat watching what I think you’ll agree is a seminal episode of Shaun The Sheep, called Mower Mouth. In it, a goat goes on the rampage, eating underpants, tyres, bricks, a horn, the entire contents of an allotment and half a ton of grass.


My daughter watched this, giggling away, until she suddenly stopped, went very wide-eyed, and A Big Idea popped into her mind.

“Mummy,” she announced, solemnly.  “I think that goat’s got Prader-Willi."


Video is Shaun The Sheep - Life's A Treat

Saturday 22 October 2011

Pica

People with Prader-Willi Syndrome - who have insatiable appetites - sometimes display traits of another eating disorder.

It’s called pica, and it comes from the Latin for magpie, a bird known for voraciously eating food and nonfood items alike.

Pica is eating stuff that really shouldn’t be eaten. Like paint chips, soil, soap, candles, and stones. Or a McDonald’s breakfast. 

We all do it to a certain extent as very small children, when we put everything we touch in our mouths as we explore the wonderful new world about us. I once ate a worm sandwich, but that had less to do with exploration and more to do with my brothers and a bet. My recollection remains fairly vague as I seem to have scrubbed out the more unpleasant details from my memory banks.

But some people with Prader-Willi Syndrome, driven by their hunger cravings, display pica-like behaviours not just as a child but throughout their life, eating non-food items and unprepared foods such as raw meat, or frozen pizza.

My daughter has only really had one problematic pica-like experience (described in the post Bones. The clue’s in the title).

But it’s something we have to be aware of. At the moment, she still accepts that I’m in control of what she eats, and doesn’t sneak stuff. But it’s not impossible that one day, when I’m not watching, she could rifle through the little food waste bin in the kitchen and scoff down - say, for example - some of the raw, fatty bits I’ve cut from the chicken I’ve prepared for that night’s meal. 

Imagine it. Imagine being so hungry you’d rifle through a bin of scraps. Or eat dirt, or sand, or tin foil, or Blu-Tack.

So the next time someone tells you they’re starving, tell them they’re not. They’re really not.

Video is Radiohead - Morning, Mr Magpie

Tuesday 18 October 2011

Work

She used to want to be a policewoman. It made sense: my daughter has always been fascinated with wrongdoers.

I’ve always been fully aware which of her classmates were the rulebreakers, because she’d come home and tell me in great detail which rules had been broken and by who. She’d do this by discussing the miscreants’ crimes with one of her imaginary friends*.
(*See previous post Trees)

‘Poppy’ would ask her why Steven was in trouble, and my daughter would shake her head and recount the moment when Miss Reilly had to send him to the headteacher for drawing rude pictures on the wall. (Her description of the picture as a ‘sausage’ leads me to think that Steven may have drawn a penis).

If my girl ever heard a siren, or saw a police car with flashing lights, she would announce, solemnly, that the police were going to arrest some burglars and lock them up in prison, where they would not be given any tea.  (The ‘no tea’ bit being the greatest punishment, of course, in the mind of a child with Prader-Willi Syndrome).

But that’s all changed now. She now wants to work in her most favourite place. A place filled with her most favourite (non-edible) things. She wants to be a librarian in our local library.

She’d obviously been thinking about it quite deeply. “Will I be allowed to work in the library? Because if I can’t get a job there, will I have to work in another library somewhere else where I have to get the bus? I don’t really want to get the bus. Am I allowed to work in a library?” She asked all this without taking a breath.

I find it hard to answer these sorts of questions, because I can’t give her the straight yes or no answer she desires. And also (I write, gritting my teeth angrily) because I have no idea whether there’ll even be any public libraries still open when she leaves school.

I think about her learning difficulty and some of the more challenging issues involved with PWS and wonder whether it will be possible for her to have a job at all, let alone the very job she’s set her heart on. I hope she can. She knows she’s different. She knows there are things she can’t do, or isn't allowed to do. But this isn't much to ask, is it? 

I need to find out more, about work experience, life-skills courses, charities, schemes, grants, anything that could give her what most people want: the chance to work, and be valued for it. Even if it was just for a few hours, even if it was just voluntary.

If she did end up behind that library counter, there will be HELL to pay if you fold down the corners of your books, or bring them back late. I’m just warning you now.


Video is The Clash - Career Opportunities

Sunday 16 October 2011

Golden

A scene from my kitchen, yesterday
Have you heard of the Golden Hour? In medicine it’s the time period following a trauma when there is the highest likelihood that urgent medical treatment will prevent death.

In our house, we have our own version of Golden Hour. It’s the time period in the run-up to tea, when there is the highest likelihood that I will murder my children.

Between around 4pm and 5pm, my kids go a little stir-crazy, my blood pressure rises to the point of there being a whistling in my ears as the steam escapes, and I lose the plot.

My daughter, who has had a long day at school, is tired and as hungry as only a person with Prader-Willi Syndrome can be. My son, who has had a long day acting like the crazed offspring of Zebedee and Tigger, is also tired (but - obviously - not quite so hungry).

So what we get is a two-year-old winding up a 13-year-old, usually involving toys used as missiles. My stubborn teenager refuses to budge from her seat on the sofa, her high pain threshold helping her withstand the physical onslaught.

It ends in shouting, bruises, sometimes a bent pair of specs, and usually a retaliatory shove toppling the Toddlinator from the sofa, at which point he runs sobbing into the kitchen protesting wildly about how his sister has pushed him. Quite how he has the chutzpah to be so upset and affronted by an action taken only after enormous provocation, I don’t know.

It’s at this point that I sit down and explain calmly and reasonably to my rapt, attentive offspring how they need to be more gentle and caring with eachother, as they nod solemnly at me and we all have a group hug.

Nah, not really. It’s more like: “WILL YOU TWO SHUT UP BEFORE I POUR THIS BOLOGNAISE OVER YOUR HEADS!” 

Cue more crying, the infuriatingly amusing retort from my boy of: “Don’t shout, Mummy. Be nice”, and the stricken look on my daughter’s face as she wails: “But if you do that, WHAT WILL I HAVE FOR TEA?”


Video is Grant Lee Buffalo - The Shining Hour

Friday 14 October 2011

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 

Wednesday 12 October 2011

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

Monday 10 October 2011

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

Saturday 8 October 2011

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"






Thursday 6 October 2011

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 

Tuesday 4 October 2011

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

Sunday 2 October 2011

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