Every Vote Counts

I am approaching this milestone in Claudia’s life – her first vote, with an unusual amount of fury.

Normally in this household, it’s Steve who strides about threatening to throw things at the TV and I do apologize that I only seem to come here in anger these days.

But this election campaign has revealed so much about who we really are and what we really value that it’s been an awful shock for me to realize.

Claudia has a chromosome abnormality which affects her intellectually and physically. At 19 years old, she’s still incontinent. She relies on other people to dress her, feed her, remember to toilet her (or change her if they don’t remember or she doesn’t ask to go)

She speaks, but if you don’t know her well it can be hard to understand what she’s saying.

She walks, but she’s pretty un-co and relies on physical support. She cannot safely walk anywhere outside unassisted and has no traffic sense.

This is not going to change. For her whole life she will require help and will have to pay people to do the most personal things for her.

She can be frustrating, repetitive, loud, gobby, clammy, dribbly.  There are times you don’t want her to touch you, grab your face, shout questions at you. When you’re tired, or sick, or sick and tired of it all. But she doesn’t recognize when those times are.

She will always be vulnerable around people who don’t have a natural love and affection for her. I find it too hard to even think about that.

So, given her life will be lived literally at the mercy of others, for whom should she vote?

It’s a responsibility I was going to take seriously, carefully, studiously.

I was going to research everyone’s disability policies and weigh them up on her behalf.

But now, I’m just “F%*K it,  Anyone but National.

Anyone.

It’s not just their hands off policies for the past nine years, which have seen them fire ECAN and allow rapid intensification of dairying without due consideration. The Canterbury rivers I grew up swimming in, Claudia now can’t.

It’s not just their refusal to discourage speculation in property, resulting in a housing market where people with spare money have been hoovering up properties from a limited market and renting them back to people who can never save enough for their own deposits while paying huge rents to live in foul little shit boxes.

Our own experience of renting was enlightening and horrible. We paid $500 a week to live in a cold, poorly maintained house where Claudia got sick with more frequency and ferocity than ever before in her life.

It’s not just the underfunding  of health and welfare services so now we have shameful  suicide stats, mental health, public health and welfare issues. We see more of these people as Claudia gets older. Out from under the umbrella, in isolation. Not coping. Where will Claudia live when we are gone? Who will care for her?

It’s not just the yawning, cruel gap between the have’s and the have nots.

Disabled family members need full time care. Working full time when raising people like Claudia is not possible for many reasons. She’s full time. Even when she’s not in the house the paper work, logistics and appointments take up hours and hours. And more hours!

If you were suddenly delivered a child requiring full time care, could you manage on one income? What if you earnt the minimum wage? Would your relationship even survive? Could you earn enough to pay someone else to look after your child if you did return to work? Or just needed a break? Would you have the energy to manage someone else full time as well as other family members? Could you kiss goodbye to going out without having to either compromise the entire outing by taking her with you or paying someone else to look after her while you’re out?  Would you have anything left for yourself? Time? Money? Hint: probably not.

Disability is not as easy for the wealthy to dismiss or gloss over they way they do with poverty. There’s nothing we did or didn’t do to have Claudia. She’s not the result of poor choices, being lazy or not wanting to have better in our lives. We couldn’t “just work harder” our way out of Claudia.

But the result is the same – she comes at a massive, compounding  cost.

And hey, Nat supporters, poverty, where we have people working 2-3 jobs and still not affording to live, is not something THEY’RE doing wrong. Can you really be that blinkered and privileged?

It’s not just National’s dismantling of regulations and unions which has directly resulted in deaths especially in the primary industries like forestry. And lets never forget Pike River. About which they have been stalling for years now.

Todd Barclay? What a hideous little creep and Bill English enabled all of that cover up and then lied about it.

While Jacinda Ardern has pursued a “relentlessly positive” campaign, National has chosen to counter that with a relentlessly negative one.

Making up lies, maintaining lies, doubling down on things that are demonstrably wrong; lies that are so audacious, insults that are so childish, rarking up their support bases, who cannot help but adopt the same smug faces of their leaders. Because they’re all right, mate. They’re on some “winning” team and they deserve a tax cut!

And that’s so depressing for me to realize – that we are a national of selfish, greedy, short sighted, mean spirited people, prepared to lose so much for so little.

My father was a true blue National supporter, a farmer and party member. He was also an environmentalist, an honest man, who believed (and operated) with a gentleman’s handshake.

I can’t see him admiring anything about the people in the party now. What would he say to Claudia about their behaviour?

So, back to her.

Like I said, I was going to research everyone’s policies around disability to make an informed choice.

But then I realized that’s not what Claudia would do herself.

She’s a great barometer of people, her instincts are spot on. Like a dog, she can sense kindness and support, can likewise sense fear in the eye, a closed nature. A mean person.

She’d rely on her guts here.

There’s not one person left in the National party who is likeable. Not one who has shown they would give her any real consideration. They are horrible individuals.

English, Bennet, Joyce, Smith, Brownlee, Collins, all of them – ugh. And I’ve written before on how the current Minister for Disability issues views us.

They’ve brazenly played a dishonest game and she would have zero respect for any of them over it.

They are everything we discourage in children. They are fibbers, cheats, greedy pigs, taking all the stickers for themselves, dictating who can and can’t play.

They’ve shat in the sandpit and blamed the poor kids. And they’re getting away with it.

This election has been a turning point for me.

I used to be proud of this country;  our environment, our landscapes. I was proud of our history, being the first country to give women the vote, Of Edmond Hillary and Lorde.

Our Maori , our Treaty, our trying to make things more right.

Our mucking together and mucking in. Our sense of community.

Our Welfare State, our ACC, our Education Act of 1877 making us the first country in the world to make education free, compulsory and secular.

Our values. Mostly our sense of fair play.

I’m not proud of anything about us at the moment.

Now I’m just sad at how smug, ugly and dishonest is the face of “success”

As we watched, aghast, at lies paving the way to the White House, I expected more from us. I thought we were better than that.

I still don’t know who Claudia is going to vote for. But it sure won’t be more of the same.

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Storm in a Teacup

The thing about Twitter is that is forces you to choose your 140 characters carefully.

To say what you really think as artfully and briefly as possible.

To be pithy.

Understood.

So when Nicky Wagner gazed out of her inner city high rise window at the twinkling harbour below and found herself trapped by circumstance, she shared her thoughts with her followers like this.

Screen Shot 2017-06-19 at 9.19.58 am

The jaunty little exclamation mark like a little kick in the guts.

There was a bit of a social media outcry which drew the usual backlash of “lighten up” and “sheesh you can’t say anything these days”

Then came Nicky Wagner’s half arsed “apology” about being sorry if she offended – without acknowledging why, given her portfolio of Disability Issues, her tweet was so tone deaf.

She followed that with a weird justification saying “we all would rather have had the meetings out on the harbour”.

Why? To get away from the annoying disabled people who can’t get onto boats?

She has revealed herself to be the wrong person for the job.

Her tweets are as naive as they are patronizing. I don’t want her representing issues pertaining to my daughter because I see no evidence she really gets it.

18 years ago when Claudia was born we had to start apologizing for the inconvenience of her.

It wasn’t something we realized we had to do, until we got the signals from other people that our apologies were expected.

Here are some things said and done to us to make sure we understood just how inconvenient we were;

  • A nurse complained that we had been in hospital so long we were in the way.
  • A nurse complained Claudias lack of understanding her made her job harder and the extra effort was annoying.
  • A teacher complaining to us that Claudia had “mucked up all the books” which had been given to her to keep her quiet in a corner of the classroom. It was inconvenient to her that she had to reorganize them. We had no control over what happens at school.
  • A teacher complaining to us that jotting down information about Claudia’s day, including information about her toileting, was inconvenient to her.
  • A school secretary sighing pointedly and telling us how inconvenient it was that a row of hooks had to be removed to accommodate a new accessible toilet for Claudia at school.
  • A teacher being furious at our lack of appreciation for a new changing area they had put into the school to accommodate our 5 year old. It was a baby change table attached to the wall. Completely unworkable for a primary school aged child. Taking it out again (why did they put it in?) was going to be horrendously inconvenient.
  • Overhearing a Ministry of Education official being briefed on their next meeting (us) and hearing ourselves described as ‘more vexatious parents” and then having to sit through a meeting where there were serious issues without complaining too much because it hurts being called “vexatious” as if our concerns were annoying and trivial and not that real.
  • Finding out that “vexatious parents” is in fact a term they use to condemn us all into a single pile of complainers.
  • Understanding that they see the meetings with people like us as an inconvenience they have to go through in order to appear concerned.
  • Being told (frequently) that events we have been invited to as a family, wouldn’t be “appropriate” for Claudia, that we might find her being there inconvenient.
  • Harrumphing, eye rolling, staring at the supermarket regardless, but more so if we take too long to walk down the aisle or Claudia stands shouting at the frozen macaroni cheese or she tries to watch the scanning and numbers of the person ahead of us at the checkout.
  • Shushing at parades, outdoor performances and events because she’s excited to be out, while all around us the joyful squeals of young children are smiled at.

These are all reminders of how inconvenient she is to the lives of the able-bodied, the neuro-typical and the busy and active. Even those paid to be around her.

“Sorry” “Sorry!” “I’m so sorry” “okay, sorry about that” “oops! Sorry!”

So there she is, our Minister for Disability issues. Letting us know without room for misunderstanding, that disability is inconvenient for her.

She’d rather not be having to deal with meetings about disability.

She’d rather be on the water!

Sigh. How inconvenient it all is!

Sorry Nicky 😦

But Hey! Cheer up!

After your boring meetings and your annoying job representing issues that have no impact on YOUR life, you can get on with your sailing! Or mountain biking! Or having an afternoon off!

But we can’t. Because disability IS our life. There is not one day in our lives where having a family member with disabilities hasn’t impacted our lives, dictated our decisions, diminished our potential.

The biggest barrier to inclusion in our own life has always been other people’s attitude. Peoples attitudes make or break us.

Her tweet felt like another little face-slapping sigh about how inconvenient people like my daughter are.

We need someone as Minister who has an inkling of insight, a snotch of understanding, a skerrick of enthusiasm, a smidgeon of sincere appreciation for what it is for people like us.

And our Prime Minister calls it a ‘storm in a teacup”

No Nicky, no Bill – this isn’t a storm in a teacup.

It’s a revelation that you are so woefully out of touch you can’t even see why.

An Excellent Incident

Once upon a time I designed a drama class for people with disabilities.

It was called “Finding Our Voices” because I realized that we very rarely, really  listen to them.

I had made a series of films for an agency who worked with people with intellectual disabilities.

I interviewed some of those disabled people for their perspective. People who had worked with these people, sometimes for many years, were taken aback to hear their thoughts and stories and memories.  When they were asked. “ Wow! I didn’t know that about Margaret!”

As a parent of an intellectually disabled person I know how easy it is to always be about time. Dinner time, bath time, bed time, move on, come here, go there.

Sometimes groups will perform “for” these people. Groups of Brownies wearing Santa hats and shouting “Grandma Got Run Over By A Reindeer” at them in order to earn a community badge.

But it’s not often these people are given a voice and listened to by the rest of us.

A massive step in the two-way relationship between theatre  and audiences of all people came with the introduction of “relaxed” performances for people like Claudia.

The Court Theatre here in Christchurch is especially good at this and I have written before about how much she loves these shows.

Like most of the audiences at these performances, she’s in excitement overdrive and far from relaxed. But the actors and crew are much more relaxed about their audience shouting and clapping at them in all the places they feel like it.

And now the Court Theatre has stepped up again by staging The Curious Incident Of The Dog In The Night-time.

It’s an adaptation from an amazing book by Mark Haddon.

A curious book, a conundrum of a book which is quirky and devastating. It’s both funny and tragic, full of knowledge and innocence about a confusing world which the central protagonist finds frightening in it’s disorder.

Christopher the hero and from whose perspective the story is told, is on the Autistic spectrum.

Like so many others my first thoughts were “How the hell are they going to stage that?!

How are we going to understand Christopher’s brilliant and baffling mind? How can they show us the mind of as person who responds to the world like Christopher does?”

I found out last night.

It’s a masterpiece of theatre, using all the modern devices of sound and lighting and audio visual material to take us right into Christopher’s head. And the actors were perfect. Just perfect. I cannot articulate how perfect they all were.

Tim Earl as 15 year old Christopher is faultlessly authentic. It’s an exhausting life and an exhausting performance and he’s mesmerizing. Mark Wright and Serena Cotton as Christopher’s parents were stunning. Just stunning.

This was more real than the book.

Right there in front of us we saw Christopher and understood him and saw what it is to parent someone like him. They got it so right.

In a packed theatre of ordinary theatre-going people, there were moments of utter, utter silence for long periods of silent realization.

I laughed, I cried, I stopped breathing often.

This cast did more for understanding Autism, appreciating Autism and why we need to understand and appreciate Autism than anything else I can think of.

Yes it’s that good. It virtually never happens that someone with a “disability” is the central character and also the voice of the story.

It will entertain you, haunt you and change you.

In the book Christopher says “feelings are just having a picture on the screen in your head of what is going to happen tomorrow or next year, or what might have happened instead of what did happen, and if it is a happy picture they smile and if it is a sad picture they cry”

You’ll have lots of feelings when you see this incredible production.

Thank you Court Theatre. I’ll be going again.

https://courttheatre.org.nz/show/the-curious-incident-of-the-dog-in-the-night-time/

A Touching Story

 

I’ve just hung up the phone from a courtesy call the guy probably really really regrets making.

He was calling from the company which has won the contract to transport Claudia to and from school.

Yes, there was a terrible day at the beginning of this year when we heard that our transport provider had lost the contract from Term 2 this year – and that meant we lose Trevor!

Our wonderful Trevor, who picks up and delivers Claudia with such good humour and friendliness. Who listens to Bowie and The Beatles and rocks it out with the guys en route.

Trevor, who with his enormous heart came to our place in the holidays and drove Claudia to her holiday programme each day because I had a fractured ankle and couldn’t do it.

And who refused even a bottle of wine as thanks, because he’s just a good person.

A really, really good person, ranking up there with Nigel in Claudia’s estimation. And mine.

So next term we won’t have Trevor.

Because of an unexplained Ministry of Education decision we’ll have a different van with a different logo and and a different driver. I’m sure the driver will be super-nice and well qualified and that we’ll all get used to the change.

But hidden in page 3 of the extensive letter explaining the change was a little list of “what our drivers won’t do”. And that includes “touch the students”

No touching. That means No Touching. At All.

As a parent I say “What The Hell Sort Of Stupid Rule Is That You Wankers!?”

Because here’s the thing.

Claudia will do anything for Trevor. She won’t for me.

Claudia has learnt to get in and out of the van – because Trevor has taught her.

She does it for him because it’s his van. His van and his rules and his experience and knowledge that allows him to trust that she is quite capable of putting her foot here.

And then there. And of holding this handle like this. And hoisting herself up like that. And then putting her other foot here. And her bag here. Like this. And then he puts her seatbelt on for her.

That’s important. It’s not me doing things for her. It’s another person helping her and her letting them. And her learning skills from people who have skills I don’t have.

And it all increases her independence because she leaves me at the door and takes herself and her stuff  to Trevor and his van and his support and his care.

Look, I understand there was a terrible case of drivers abuse of a disabled student that rocked every parent who has to trust other people to transport our vulnerable children.

I get that there has to be some resulting change or remedy to prevent any possibility of that happening again.

But this blanket ban is an ill-conceived knee jerk reaction from a Ministry who I frankly doubt has ever seen one of these vans and jumped in for the ride.

Because these are not just nameless faceless taxi drivers who transport people to and fro.

This is an extremely important part of Claudias day, not just something that happens between other things. Driving with Trevor is a twice daily is an important thing in itself.

The journey is a part of her routine and if you don’t think her time spent with Trevor is just as critical to her life and her opportunity for interaction and learning – yes learning, then think again Ministry!

And if you think you can stop someone like Claudia rushing to welcome Trevor, or leaning on him adoringly to say goodbye twice a day after their regular journey together then think again Ministry!

And what do you propose those drivers now have to do to protect themselves from her perfectly normal need for human interaction? Flinch? Is someone going to move away from Claudia if she gets too close? Because that will only make her chase them more.

And what of me? Do I now have to schlep out onto the street to coax Claudia into the van to the amusement of the neighbours?

Will she get into the van willingly for me? No She Will Not.

She will keep grabbing me and asking questions of me about what might happen later in the day or who’s coming or what time – things she never EVER hassles Trevor about – because why would she?

And do I now have to hoist myself right into the van to put on her safety belt?

And how could I have done any of this when I was on crutches? If I end up in plaster again (PLEASE NO!) will she just not be able to go to school? Or would I have to pay someone to come around to our house for the sole purpose of putting her in the van while the driver stands by?

This affects thousands of students every day.

It’s a nonsense, an affront to common sense and an insult to the role these drivers have in our lives.

Twice a day, five days a week Claudia gets to ride in a van with Trevor.

She loves driving. She loves routine. She loves Trevor.

Just ask Claudia who her favourite people are.

If the statement that drivers are not allowed to touch the students was intended to reassure parents that drivers would not abuse our children it hasn’t.

It’s added more stress.

We should have assurances about driver credentials and checks, about the new cameras in vans, and that should be enough.

No-one asked our family about any of it. No-one asked how we would like to be better protected from potential abuse. No-one asked if any of these proposed new regulations would affect us.

I’m sick of having things done to us in the name of our own good.

And the bus company who shrugs and says it’s Ministry policy should be back at the Ministry advocating for us when we don’t get access to the Ministry like they do.

And all of these people should remember who they are supposed to be serving and how their job only actually exists because of people like Claudia and is what they’re doing really best for her? Really?

Really?

Hey Ministry of Education! Do you even know people like Claudia?

Hand Me Down Happiness

Clothes maketh the woman annoyed. I just can’t muster the enthusiasm.

I like to think of myself as a cool and creative – like Steve Jobs ; him in his ubiquitous black jumper and jeans ensemble because his head was always full of more exciting and urgent thoughts than what to wear.

But in reality I’m just lazy. My head is full of nothing significant and I still don’t want to have to think about what to wear.

Shopping is not a pleasure. I only go to replace the things I’ve worn out.

Racks of clothing make me feel dizzy and irritated.

I could say it’s my liberal tears at the sweat shops which see children in slave conditions churning out garments for high streets where they carry a price tag approximately a gajillion times greater than the poor mites were paid.

But no.

I just don’t like looking at clothes, putting them on and off, paying for them…it’s all bad.

I have had various “uniforms” in different stages of my life – I carried the childhood dungaree habit well into my teens. I would buy them in bulk, both khaki and white.

The white ones I would dye (sometimes even tie-dye!) with mixed results.

When Dexys Midnight Runners burst into my life in 1982 I felt validated as though I was finally and unexpectedly  in vogue. Dungarees were in.

Next came the university years where I engaged in a strict “no trousers” policy for reasons lost to me now. I lived in vintage petticoats with clumpy boots and army surplus jerseys.

I had one special dress known as my “party dress” in coral silk which I wore every weekend for years until it literally shriveled up and died in someones washing machine.

I spent my 20’s struggling to find a look as I moved haphazardly between traveling overseas and working in TV, both of which can appear glamorous but in reality are anything but.

During one period in my life where I was a reporter for a regional TV station I routinely got it totally wrong.

The nature of daily news meant I never really knew where I would spend my day. And so it was I found myself doing a story from the snow line in sandals. And scrambling though farmland in a pencil skirt. And interviewing Imran Khan in a grubby tee shirt.

All these years later I still have a stark little wardrobe – now of just jeans and some floaty shirts.

Jeans are awesome. I can wipe my hands on them, walk the dog in them and kneel on bathroom floors taking Claudias shoes on and off in them. You can garden and cook and bath other people in them.

It won’t come as a surprise then that I’m a bit random when it comes to dressing Claudia.

She is often sent out into the world looking like a little Spice Girl explosion – a little baby, a little posh, a little sporty, bouncing gingery curls and altogether quite scary.

When she was very small it didn’t really matter.

You’d think given all the above I’d be a big fan of uniforms but school uniforms do my head in.

WHY in the name of all things unholy would anybody dress their children in items of clothing no sane adult would wear unless it was required?

People shouldn’t wear things that don’t actually exist as real items of actual clothing!

I’m looking at you kilts and long-sleeved polo shirts!

Long sleeved polo shirts? How are they a thing?

And forcing Claudia to schlepp around in a kilt was just cruel.

Like a giant horse blanket it weighed her down and routinely fell off her (velcro being easy for her to fiddle with and rip open)

Can you imagine trying to take someone to the toilet and having to wrestle a kilt to do so? The dry-cleaning bills were horrendous.

Now she’s a senior at school she wears mufti.

I resent paying a lot of money for clothes that will potentially be chewed, ripped and blipped on.

So I’ve taken to going to Op Shops looking for things for Claudia.

I stumbled across a second hand shop recently which was a sell on-behalf – it was more expensive than most shops I’ve ever seen. I found a handbag I liked. It was $175. Second hand!

The assistants rewarded my amazement with a tour of some of the other items for sale.

Including a brand new, tags attached, ordinary-looking ensemble hot out of the suitcase from Bloomingdales, New York.  $280. American.  A “mistake” purchase.

How does that happen?” I wondered aloud.

too much money” was the answer, “shopping as sport”

The closest I’ll ever get to shopping as sport is getting in and out of a shop as fast as I can.

Which is why its extraordinarily lucky that Claudia has some wonderful, slightly older, slightly bigger friends who pass on their sporty, trendy, cool, useful clothes.

Clothes a teenager is happy to be seen in ; clothes that don’t make her look like the ragamuffin waif her mother would send her out as.

Clothes from labels I’ve never heard of and shops I’ve never entered.

She knows she looks good in these items I would never have chosen.

She smiles at herself in the mirror and for the camera.

They are not always practical for a girl like Claudia but they suit her. She’s a teenager in them.

They fit her age if not always her stage.

She’s lucky ;  ~ I’m lucky  to have the gift of hand-me-downs that make her more typical.

It’s something her Mother could never do for her.

You give her the gift of peer invisibility. You know who you are. 

Thank you.

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.

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.