14

It’s a satisfying number, 14.

It’s an even number but is the sum of two uneven numbers (7 being the best number ever IMHO)

14 is the number of lines in a sonnet and is the number of Beethoven’s beloved “Moonlight” piano sonata.

In days it’s a fortnight which is the perfect length for a holiday.

It’s the number of stations of the cross and it’s one number more than the unlucky 13.

In 1980, 14 was the best age to be.

My friends and I were smoking enthusiastically, learning to drive and arranging our own social lives which started to include boys.

At school it was accepted that it was the year for maximum hijinks, not being the babies anymore and also not having to worry about sitting School Cert.

Our year group didn’t disappoint and earned more detentions and fatigues than any previous year had done. We exceeded expectations and not in a good way.

It’s the current age of my son, who I’m very relieved to say is far less rambunctious than his mother and her terrible friends.

And it’s the school year of my daughter. That’s right – Claudia is in Year 14.

She’s done years 1-13 and she’s back at school for another year. So when people ask what year she’s in at school it’s 14.

Here in New Zealand people like Claudia can stay at school until they are 21 (year 17!)

But much as she loves it, I don’t think she’ll be staying that long.

While there is currently no real plan ~ the idea of her being there in year 17 by default because I haven’t organized anything different is an incentive to plan something else for her by then.

Her Facebook feed is currently filled with pictures of her peers and their families, posing at home, at airports, in front of universities and over-excitedly in tiny bedrooms in tiny halls of residences.

They are off in a whirlwind of breathless independence, embarking on studies and careers as diverse as they are.

What they have done is Left Home.

Their parents appear wistful and reflective.

Those years have gone ~ “where did they go?!” they cry.

Their babies have gone and the “freedom” they now have from each other seems to hurt a bit more than they thought it might.

I don’t have that yet.

Claudia’s year 14 timetable is pretty much like her year 13 timetable- which suits her perfectly.

Today for instance, being a Tuesday, her timetable is

Move- Dance until morning tea time.

Then it’s News.

Then Exercise.

Then Music and Movement.

Then after lunch it’s a Disco until home-time.

It’s 30 degrees here today. That’s a lot of dancing in a day. She’ll sleep well tonight.

But today being a Tuesday, she won’t be sleeping here.

Because at 18, in year 14, we are ready for the first steps toward independence and Claudia has Tuesday nights with “Nata” and her family. She also has an overnighter there every second Friday night

Claudia’s “leaving home” at this point is three nights per fortnight with another family.

It’s a revelation! I’m overwhelmed with freedom!

I’ve been to the movies, we’ve been out to dinner, we’ve been to a wedding and we’ve sat and stared at each other at home and revelled in the fact no-one has had to get up and down to tend to her.

Like other parents who might wistfully wonder if their children are missing them a little bit, I waited to hear she was a bit sad, or asking for me. That never happened.

When I do enquire I’m sent pictures of Claudia tucked up cheerily in her “other” bedroom, surrounded by toys and happiness from her “other” family and I have to accept there is now a whole part of her life that I’m not part of. It’s hers – not mine.

This is what independence looks and feels like.

So while nothing happens in a hurry with Claudia, and her “last year” at school is more like 8 terms than 4, we have begun the process, long and uncertain as it is, of her leaving home.

One of my early blogs talked about the seven year times of massive widening gap between Claudia and her peers ; the ages of 7,14 and 21.

Now that we’re there I’d add this “Year 14” year as well, where her peers are suddenly a million miles from where she’s at. It’s a reminder of the differences. When other people exclaim at how quickly it all goes we sigh and think “no”.

But at least we have taken the first steps. Thanks to an amazing woman and her gorgeous family, we are beginning to imagine a future where Claudia “the Dominator” doesn’t actually dominate everything in our lives and moves a little further toward independence from us.

So far, we’re the ones in shock at the adjustment. Just like the other parents.

Claudia, like her peers, is thriving.

So maybe our road is longer and more winding than most people’s, and we’re certainly more tortoise than hare on that road – but there is finally the glimmer of the promise of a finish line, whatever and wherever that may end up being.

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It Hurts

I have been sporting a cracked fat lip for a week thanks to Claudia.

She head-butted me, not on purpose, but in the course of the usual undressing routine in the bathroom.

Her head flew up into my face and swiftly and suddenly there was pain and blood and me roaring in agony and her roaring with laughter. Because that’s her response to other peoples pain and bleeding and making loud noises.

For one of the most social weekends we’d had in ages I looked like bad botox with my cracked and sneering upper lip. It hurt.

It amazed me how quickly it happened. Then it amazed me it hadn’t happened before. That in all these years of dressing and undressing and manhandling Claudia she hadn’t, that I recall, hurt me like this before.

As she gets older though, things are changing.

At 18 she’s now slightly taller than me. When I’m washing her hair in the shower my arms have to be so high the water runs down/up my arms and into my shirt.

It’s annoying to get so saturated and my arms ache.

She’s always been freakishly strong but now she’s equally determined and I can’t hold her back when she wants to rush down the steps and fast-gangle to the end of the driveway to watch departing friends and family until they eventually turn a corner.

TOOT! TOOT!” she shouts pointlessly at their vehicles, refusing to come back inside until they’ve gone from her sight.

One day she’ll fall down those steps in her frantic haste. And it will hurt.

Lately she’s resisted my taking the iPad away at night. She’ll grip it and pull back hard and has once or twice hit out at me. I’ll say “don’t do that!” and lately she’s sometimes said “smack you?” when she knows I’m getting annoyed with her.

Our family are not smackers. I wasn’t smacked and I didn’t smack my children.

But Claudia knows what smacking is (or at least the threat of it)– and when I get cross with her she taunts me by asking if I’m going to smack her – “smack you? smack you?”

I have no idea who taught it to her several years ago but its some consolation that she’s not fearful of the prospect and usually asks with a giggle.

As an aside – in the whole so-called “anti-smacking” debate it astonished me how many people advocated for their right to smack their kids. Usually the excuse was “that’s all they understand at (x) age”

I have spent 18 years raising a child whose “understanding” is certainly compromised and not one expert has ever, ever suggested to me that smacking her – at any age – would help her “understand” anything better.

When my lip was swelling and bleeding and so painful I understood what it felt like be really cross with her – this was not a battle of wills, this was me suddenly and shockingly physically hurt.

I didn’t want to hurt her back but I was so frustrated it happened!

My back is constantly sore from lifting, bending, supporting.

My knees ache from all the hard bathroom floors I kneel on.

She sometimes wakes in the night, she usually wakes early and in the evenings I can’t go to bed until she is at least settled.

I’m always tired.

So while she hasn’t deliberately hurt me, looking after her does hurt me.

Last week a woman from Blenheim was sentenced for 4 years in jail for murdering her daughter, who was only two years older than Claudia. Ruby was just 20 years old when her mother sedated her, then strangled her until she died.

Ruby had Autism, required full time care and attention and was violent.

Her Mum was Ruby’s sole care-giver. For 20 years she had tended to her daughter until she decided murder and a certain jail term was the better option for her. And she killed her own daughter. Can you imagine?

Hilary Stace writes well about the issue here;

http://publicaddress.net/access/murder-its-not-ok/

This case shocked and terrified me. It hurt me on every level. It still hurts.

That this sort of thing can happen is shameful. It reflects badly on every single one of us.

People who require high levels of care through accident or misadventure or degenerative illness don’t have the fights we parents have to access enough support.

The pain for carers is real. And relentless. The only villain in these stories is a system that abandons people while the rest of us murmur “poor thing” and get on with our own lives. Ruby and her Mother were utterly let down.

Hilary has good ideas (above) on how to address the issues.

In the meantime I can only hope Claudia doesn’t get more aggressive, that I don’t suspect she’s in more pain, that her behavior doesn’t become more difficult for me to manage.

I’m getting older. I hurt more.

I am lucky in that I’m not in it alone. Claudia still goes to school during the day.

We have family and friends and we have each other.

Tonight Steve and I are going out for dinner. Something other couples our age can take for granted but something we can hardly ever do.

In the wake of Ruby’s death I understand now it’s more important than ever to take a break from the relentlessness of caring for someone else and take time for ourselves.

Our future might depend on it.

Talking Dirty

 

We recently moved house and it wasn’t long before Steve and I each got letters from the Electoral Commission reminding us which electorate we were living in and asking us to sign and send back our changed details.

And then there was a third letter from the Electoral Commission – for Claudia.

I don’t think I had ever considered Claudia and voting. Claudia voting! Imagine!

They knew she was now 18 and noted she hadn’t enrolled. I was a bit befuddled about what it all might mean so I gave them a ring.

Turns out Claudia is of course entitled to vote. She’s alive and of age and while its not compulsory to vote (unless Gareth Morgan has his way) they said she would be well advised to partake in our democracy, engage in the issues and have her say. I couldn’t agree more.

Some people consider politics a bit of a dirty word. They think that politics, like religion, is not a fit topic for polite conversation.

Our family doesn’t think that way. We enjoy loud impassioned dinners where everyone’s shouting and either indignant or provocative and the rules about who’s holding the spoon are pointless as the spoon’s been flung at the wall.

In our family it’s a bit rude not to join in and having no opinion is worse than having a differing one.

But in all the banter over all the chicken casseroles none of us have ever stopped to ask Claudia what she thinks. Even as we opine about her, about her situation and what religion and politics make of people like her, we’ve never asked how she feels about it all.

We know that, unlike her parents, she likes churches because of the singing (especially Christmas carols)

Would she hold political views different from ours? How should she vote?

Disability issues are only really high on the political radar of people who are affected by them.

It wasn’t an area of politics I took much notice of until Claudia came along. People told us we’d have to become outspoken advocates for her but I really didn’t foresee how much.

Steve has always been very politically astute and picked up the baton for our family.

Income splitting would be a reasonable option to make life a little more fair for families like ours.

In the early days Michael Cullen wrote a long considered reply to Steve about it, but ultimately declined to adopt it as policy.

In 2007 Peter Dunne told us income splitting was a priority for him but despite still being in Parliament all these years later, he has done nothing.

The late Allan Peachey met us and we had an excellent conversation around special education. At least he gave us the time.

Bill English responded to Steve’s e-mail in a way that proved he’d read it, and committed to phrasing policy better in future.

Kathryn Rich passed the buck and Anne Tolley sent the ubiquitous “thank you for your e mail, I have noted your concerns” insult.

Steve often says we have a heightened bullshit detector and he certainly sees straight through policy statements that are not in our children’s best interests. Good on him for paying attention.

In the meantime in the low-brow world of talkback, I was being hung up on by Michael Laws for defending Claudia’s right to be in an ordinary classroom with her peers. Sigh.

But that was years ago before we basically gave up.

I was once at a party that was being held on election night. I was listening to some results coming through and another party-goer was astonished at my interest. “I don’t care who gets in” she said airily, “ as long as it’s not that lesbian Helen Clark”. Another Sigh.

I have thought of this exchange often over the years. Her political apathy came from a position of luxury.

We are in a political era now where greed and self-serving are de rigueur.

Thanks to people like Paul Henry and the insufferable Mike Hosking, the populace are encouraged to believe that the people at the top of the chain are there because they work harder or somehow deserve it . They’re just better. As they feather their own nests we applaud them blindly from the sidelines accepting the promise there will be a trickle down.

This lack of nuance in thinking absolves people from being very interested in social justice. They forget democracy is not majority rules and that people whose voices are rarely heard will be overlooked. In the same way that we never previously bothered to ask Clauds what she thinks.

So I think we should hark back to a more representative time. A kinder, fairer, more humane time.

If people don’t think they are going to be affected one way or the other after an election, then maybe they should give their vote to somebody who is. Someone like Claudia. Somebody who does not have a strong voice of self-advocacy, someone who is never going to be “elite” regardless of how many hours she puts in or how “clever” her decisions. Now I think of it, she deserves two votes!

So with Claudia in mind, we’ll be paying close attention this election year, and will certainly make her vote count. And ours. I hope you do too.

Physical Signs Of Affection

So it’s 2017 and in all the excitement of leaving behind the painful year that was 2016, the monstrous first few days of Trump’s presidency caught us by surprise.

It’s been a right old walloping of realization that he is exactly who he looked and sounded like he was on the campaign trail.

Despite all the reassuring “he wouldn’t” “he couldn’t” and “he doesn’t mean that literally” musings from the astounded and excited; he did, he is and he has.

And he’s showing no signs of letting up.

But as we head into February I’m grateful for two things;

1/ I don’t have to live under his administration – and

2/ School’s back!

School being back is exciting for both Claudia and me – for different reasons.

I get my days back again and Claudia gets back to her friends and the teachers she adores.

There is one teacher of whom she’s especially fond.

Nigel.

Nigel, Nigel, Nigel, where’s Nigel? Nigel back this year? Nigel back? Nigel, Nigel Nigel”

Nigel, bless him, was away for all of last year, taking paternity leave to look after his own three children. Claudia mentioned it every day. More than once.

So now she’s back and he’s back and she’s still talking about him, reminding me he’s back, asking me to ask him to let her access the internet and telling me he has a dog named Oscar.

She often talks to herself as she drifts off to sleep and his name comes up there too.

It’s not easy being the object of her affections. She is known to launch herself at loved ones, head-locking them with her gangly left arm and vice-like grip, so they’re stuck with their faces in her armpit as she giggles with joy. Not that fun. Poor Nigel.

It’s probably wildly inappropriate too ~ however innocent her affection, it’s certainly uncomfortable to be in the grip of her wild pointy strong embrace.

Just ask Trevor.

Trevor drives the minivan which picks her up and she loves Trevor nearly as much as she does Nigel. He’s certainly on the receiving end of her physical signs of affection. 

Both men are sweet and kind and patient as they gently untangle themselves from her elbows and chin, but I know it’s annoying. I have to find a way to allow her to be affectionate with people without overwhelming them, or crossing the lines of comfort and acceptability.

Any ideas gratefully received.

We had a scare last year when a bunch of bureaucrats with no apparent knowledge of people with special needs decreed suddenly that bus drivers were not allowed to “touch” the students at all. Including assisting them. Parents had be the ones helping them in and out of the vehicle and help them with the seat belts, both on and off. Ridiculous!

For Claudia, part of Trevor’s appeal is that He is in Charge of a Bus!

From the moment she leaves our door He’s in charge. His commands = her obedience.

She’ll attempt to get in and out of the bus – for him – and is getting better at it and more independent. She wouldn’t do it for me – it’s not my bus, it’s Trevor’s!

He has the skills, patience and trust required to help her on her continuing quest to get on and off the vehicle safely and independently. I don’t.

Her ongoing independence and my ongoing back pain were at stake here!

It was an ill-advised confusing (for the students) unworkable (for the drivers) annoying (for the parents) nonsense for us all.

Thankfully it never ensued as an absolute. Or I would have had to find my way to whoever decided that was a good idea and set Claudia onto them. She’s strong. 

Culture of Entitlement

 

Here in New Zealand we woke up this morning to a grubby little story dominating the news.

One of our national heroes – an All Black – has been sent home during a tour of South Africa after revelations that last month he had sex with a women in a disabled toilet at the Christchurch airport.

It was September 18, the day after the All Blacks beat the Springboks in Christchurch and Aaron Smith and the rest of the team were out and about at the Christchurch Airport, wearing their “number ones”, representing the team, meeting and greeting fans.

At 2 pm Smith disappeared into the disabled loos with a woman.

According to witnesses they were in there for about 10 minutes.

Rhythmic tapping noises” could be heard and these same witnesses thought it prudent to record the noises and take some snaps of the couple as they came and went.

Our coverage and commentary about this incident speaks volumes about our culture and the reverence with which we hold All Blacks.

And I’m pissed off.

I’m pissed off at the inherent blokey, winky, jokey, wanky lightweight headlines ;

Smith was “Dumb”

Did Smith Do Anything wrong?”

Full witness account”

The tone of the stories – especially the one revealing the eye witness version, manages to make the people who were waiting to use the cubicle sound creepy, pervy and then in awe of this rugby hero even as they were outing him;

He said he found it quite amusing and wasn’t too worried about what Smith had done.

“I almost feel bad for putting the poor bloke in it now,” the husband said in a subsequent email.

(Stuff)

But in none of the reporting , commentary, moral outrage, finger pointing and opinion pieces which have spewed from this nation which reveres the game and its players – has there been condemnation of the fact a man who runs for his living used a disabled loo.

The media, the commentators, the fans, the misogynists, the feminists, the jilted partners, the armchair critics, the anti PC brigade and the players themselves have all missed the point in their breathless excitement.

Regardless of the fact he was representing the All Blacks in public and ducking to a public lav for a shag with a woman who wasn’t his partner was bloody stupid –

how the bloody hell dare he?

Those lavatories are not for him – whatever he seeks to do in there.

But where is the moral outrage about that?

I rarely challenge people to spend a day in my shoes.

But I suggest to Aaron Smith, the girl he rooted, the couple who watched and waited and the people who think it’s just all a bit of fun and he should be left alone and given some privacy that if they spent just one day supporting, toileting and sometimes changing depended teenage children in public loos they would know better than to use them.

That the arrogant and selfish choice of location for this tryst has itself drawn minimal criticism in this story shows me that on whichever side of the morality fence kiwis sit there is a general sense that disabled loos, like disabled carparks, are pretty much for “me too”. As someone who has no choices but to use these facilities with my daughter I really resent that.

We need them when we need them and I’ll be buggered if we have the patience (me) or ability (her) to wait for ten minutes while able people get their end away in some of the most filthy unsexy places imaginable. How bloody dare you.

For me the failure to call this is the most shameful thing about this sorry story.

Still not that Special

 

I’ve had a lot to report since my last post ;

Claudia has turned 18 and we enjoyed an amazing train ride and pub dinner with family and friends to celebrate. So much to say about that.

I have fractured my ankle in inglorious circumstances and am suddenly – and shockingly in plaster for six weeks – which has turned our life upside down, tested our stress levels and patience and thrown into sharp light how ill-prepared we have been for a primary care giver to be out of action.

So much to say here but I’m still in shock at navigating the quagmire of ACC and panic at trying to secure help.

And now suddenly the Ministry of Education has announced a shake up to the funding of the children previously known as those with “special needs” who will henceforth to be known as those requiring “learning support”.

Which now bundles all children who benefit from some extra learning support resources inextricably in with those who do have some underlying medical condition which prompts that need. That’s a bit bonkers.

And don’t even get me started on the ignorant and woefully optimistic declaration that from now on “special education” is to be called “inclusive education”. Because anyone who knows anything about both terms and both ideologies knows they are SO not the same. Just so, so not.

I’m so tired of it

Changing the words to describe our children won’t change our children and changing the words to describe the system wont change the problems inherent in it. I wouldn’t normally object to a better direction for labels but this is all such a smokescreen. Calling something inclusive without doing anything to make it more so is such cynical bullshit. 

It’s great they intend to “invest” more into preschool settings.

But they also state there will be no increase in overall funding.

And they’re going to be “reviewing” the current funding for people aged 18-21.

That’s Claudia and her peers.

Her needs are not reducing as she gets older but the indications are her access to support will.

I’m so tired of it.

Support translates as money. What we need is money.

Enough for enough teachers aids to support classroom teachers to teach all learners and to help all students to achieve more than we expect.

In every school.

We need access to specialists in speech and behavior therapy to ensure all students of all ages can express themselves and socialize.

We need schools to be welcoming. To be rewarded for being magnet schools and accountable if they’re not.

We need Principals who embrace a culture of inclusion, model it from the top and expect it form all their staff.

We need the barriers to inclusion to be identified and removed. And to admit the first barrier is a shitty attitude.

It hasn’t changed in the 18 years since my daughter was born.

Changing the names of the services and the faces of the bureaucrats and the titles of the research papers has done nothing to change the need and the solution.

But they will bend themselves inside out rather than admit the real need here – more money.

I’m so tired of it.

A Relaxed Performance

 

Going to new places for potentially exciting events (Crowds! Lights! Music! Performance!) isn’t exactly relaxing for some people – or the people who support them.

But all credit to the Court Theatre here in Christchurch for recently staging “A Relaxed Performance” of their school holiday production of The Little Mermaid.

This was a performance at which people with intellectual disabilities were welcome with special consideration given by the actors and crew to allowing for symptoms of their conditions.

So some lessening of loud or sudden noises, overly dramatic outbursts and changes to lighting may have occurred for this particular show.

In addition the actors and crew were themselves relaxed about sudden noises, overly dramatic outbursts or changes in movement from the audience.

And by default the parents, siblings and caregivers were more relaxed as nobody stared, nobody shushed and nobody minded anything in this wonderful warm inclusive magic of theatre.

The Court Theatre did everything right, beginning with sending out an information pack with pictures of the venue and characters, a story synopsis and details of parking and facilities – and ending with welcoming ushers, an enthusiastic talented cast and of course a fabulous show.

Claudia was beside herself with excitement, checking the tickets and the diary every day until showtime.

She was out of the car and striding in to the theatre, all quivering excitement and assertion.

She took her seat and sat reasonably quietly, absorbing the atmosphere and talking about the stage.

She sat bolt upright for the characters and listened to what they said.

She understood way more of the story than I anticipated and I suspect this is due to it being told to her in a live setting with live people talking to her in a real space.

She loved all the music, joined in with all the actions and shouted out to the villain when invited to.

And sometimes when she wasn’t – but nobody minded.

And she clapped and clapped and clapped – for once in her life it was exactly the right response at the right time!

That isn’t an opportunity we get very often.

She was too overcome (in a fangirly way) to have her photograph taken with any of the cast at the end and after refusing to leave her seat in the theatre tried to bolt straight out the door.

But the wonderful responsive cast were onto her, called out and went to her to say hello.

What heroes – for her and for us and everybody else in the theatre that day.

Thank you Court Theatre – for making the “Relaxed” effort.

It is very much appreciated.