What’s in a label?

Lordy I’ve been slack on the blogging front!

Raising and supporting someone with special needs is certainly time consuming at every stage of their developmental journey. But I have to say trying to manage another adult full time, with all their potential activities, outings, dates, times, arrangements, appointments – while also trying to enjoy some semblance of a life of your own, sure is hard.

I am often teased for being forgetful, but having to juggle multiple diaries, coupled with the out-of-routine holidays and special requests, is confusing for someone who should otherwise be waving her 21 year old offspring goodbye and good luck and enjoying re-discovering her own mojo.

The multiple diary-thing is because Claudia, who I always assumed was just really really nosey, is currently undergoing assessment for Autism. At the ripe old age of 21.

Because she has a chromosome abnormality, “global developmental delay” has always been the primary diagnosis. Coupled with some quite significant physical challenges over the years; multiple surgeries and recoveries which have taken priority, her other eccentricities and quirks have been absorbed by us as “just Claudia”.

Like her obsession with times, dates, who is going where, when and for how long and “go home now?” and “what time is it?”

For years now I have had to run several diaries, some for her, some for the rest of us, some for just me, some hidden, some on the bench, some on the wall, some telling the full truth and some telling nothing remotely truthful in their blank spaces. So she doesn’t obsess about what I might be doing without her.

Quirks like her obsession with trains, her distress around transitioning in and out of locations or activities. Her reliance on technology and her elephantine memory. The way she links stories and people and experiences in her head. Her focus on music.

Her complete relaxation in water (sleeping in the bath, the bliss of a spa!)

Her clapping, and clapping and clapping!

All these things have combined to paint a picture of someone who presents in many ways like lots of other people. Who have Autism.

When I’m not with Claudia I make films, sometimes involving disability. I have recently made a series of films about Autism for families with a recent diagnosis, featuring families further down the path, who have things to say and share.

I found familiar things with every family, despite the diversity of people in front of me.

As every single parent reminded me “once you’ve met one person with Autism, you’ve met one person with Autism!”

But there were commonalities that I couldn’t overlook any more.

It was in preparation for that latest film project, that I discovered there is now a recognized link between prematurity and Autism (tick!) and chromosome abnormalities and Autism (tick!)

Plus the “Claudia-ness” that has seen so many others over the years assume she had Autism and also assume we knew it.

And so now, finally, we’re going through the process of getting that label.

Will it change Claudia? No, not fundamentally.

Might it open doorways to help us understand and help her? Maybe.

The latest Autism films have been made to update a series of films about Autism I made ten years ago. Claudia was 10 at that time.

And I remember the same shocking realization that – this was Claudia! These children and their characteristics and habits and obsessions and challenges – this was Claudia!

And I mentioned it to Steve and talked to people about how it was all so like Claudia and then I promptly went back to life raising her without ever considering how helpful it might have been for us all to have had that label to help her through all the transitions of her teen years; changing schools, moving three times, pets and people coming….and going.

And now ten years on we’re here again, me aghast at how obvious it all is, so this time we are finally seeking the diagnosis; the label.

One of the most obvious differences between the films ten years ago and these latest, is the way the families talk about their expectations.

A decade ago the families were strong advocates for their children; determined to do what was best and help their child learn to manage in the world.

Today the families are strong advocates for their children, determined to do what’s best and help the world change to accommodate a wider spectrum of “normal”

Todays parents are all about avoiding the meltdown rather than managing it.

Or apologizing for it.

They understand the world is more easily modified than their children. There is nothing wrong with their children.

They are unapologetic and strong and they embrace the new and perfect normal in their lives.

Autism is everywhere! Keep up!

It was a wondrous thing to realize that subtle shift is actually huge and has occurred in a single generation.

Sometimes a label is a good thing.

It helps the rest of us understand what it might mean for her, how she might cope, or not and how we can support her and be supported ourselves.

It won’t make a blind scrap of difference to her – but, like everything in the world of disability, it’s the rest of us who might become more enlightened and one day catch up.

That’s Who We Are

I teach performance skills to young people (in their 20’s) with intellectual disabilities

This time last week I was getting messages from some of them

“I am in Lockdown. I am at the mall. I am ok”

“ Mum is coming when she can. Some people are looking after me”

“ we have locked the doors and shut the curtains. I am ok”

“Hi Fiona R u ok?”

“can we talk about this at course next week?”

Lockdown.

For students who have been through the earthquakes that tore their homes and city apart, for students who watched our Port Hills rage with fires and who have learnt to navigate this broken city with it’s ever changing road cones, bus routes and road closures.

These people, some of whom seriously struggle with changes in routine, being confined, processing abstract concepts, anxiety and seizures.

These young people who have grown out of a school setting and moved into adulthood, sometimes moving out of their homes, trying to gain confidence in independence.

All thrown into the same situation as the rest of the city ; fear, confusion, horror, – lockdown.

I was messaging them back

“You’ll be fine”

“Try to relax and let people take care of you”

“Mum will get there as soon as she can”

• even as I had no real idea when or how this would end.

And then their next messages;

“I am Ok. ‘Together we are strong”

“i remember together we are strong”

“we have been saying that together we are strong”

“together we are strong. That’s who we are”

Quoting back the lyrics at me, finding comfort in them.

Back in class this week they wanted to talk a little about what happened.

Some sang for the victims, others told stories of where they were or people they knew who had been affected,

But they also wanted to be positive and sing our Arts Integrated song.

And they sang it louder and harder than ever! – it was wondrous, powerful and very moving.

“We are the Music!

We are the Song!

We’re integrated!

Together we are strong!

That’s who we are!…”

and so it continued through verses and chorus with some hip hop moves, some heart beats and jazz hands to finish. So good.

And indeed all week, the commentary and response have raised issues of identity.

Thats not who we are,

This is, sadly, who we are,

Is this who we are?

That’s not how we do it

That’s how we do it

Who Are We?

I am so very proud of who we have been this week.

Led by a young, vibrant, authentic, inclusive, powerful, steely wahine toa, we have countered every headline relaying the appalling news, with headlines acknowledging the grace and strength of “our” response

Young people breaking into haka, gangs uniting to protect and serve, laws being changed, people vowing to change ; our innocence gone, but also some ignorance.

United.

It’s been a really tough week and the tears keep coming, for the victims, their stories, their families and their stolen futures.

Yet we’ve also seen positive action and genuine efforts to reach out rather than push away.

And on a personal level I’m so gratified that in their moments of fear, our students could remember and hold on to something that would help them

“We are the music

We are the song

We’re Integrated

Together we Are Strong

Thats Who We Are

That’s Who We Are

Shine Like A Star

Coz That’s Who We Are”

“Inappropriate”

“Inappropriate”

What a bloody awful, pinched, pious word it is.

Thrown down from on high, it serves to admonish from behind a veil of gentility, a pointed correction pretending to be polite, because “etiquette”.

It’s mostly heard by parents of toddlers, children and teens as other, older people caution them about their offspring’s behaviour.

For people with intellectual disabilities it’s used against them well into adulthood.

Two things have really thrown me this week.

Both involving students to whom I teach performance skills.

In all my classes we have a story chair, where people can come and sit in front of the class and share something about themselves, their week, their aspirations, something that’s happened to them, last week or ten years ago – whenever or whatever.

It serves to increase confidence in story telling, to bond the group as we learn more about each other, to generate ideas for scenes we can dramatise.

But mostly it’s an opportunity to be heard. Something often missing in the day to day reality of people like my daughter and my students.

On Tuesday I heard from a student, an adult woman, that she was upset because she might be moved. Moved from her residential home of the past 28 years, where her friends, her classes and hobbies, her life has been. She was very upset as she didn’t know why, and didn’t want to go.

I was concerned about what she was saying and her lack of understanding around it, so after class asked her again about it, privately. She cried, and told me she wished her advocate would “back off” and thought if she said nothing, nothing would happen and she wouldn’t have to leave.

I took her to the social worker on site. And we met together, also with the manager.

It turns out this adult woman, left at an orphanage in childhood, has a boyfriend. It’s not a sexual relationship, they don’t share a house and do nothing more than hold hands and feel special.

She also has a legal guardian who doesn’t think it’s “appropriate” for her to have a relationship, so is moving her somewhere else.

From her home of 28 years! Her friends, her hobbies, her boyfriend, her stability, security, sense of belonging – her happiness– all because someone else thinks it’s “not appropriate” for her to have a relationship.

I left it in their hands as they reassured her she could tell her advocate/legal guardian how she felt and what she wanted and that they were listening, that we were all listening, that she was allowed to speak up.

The second thing that happened was with a different class.

We’d been on a field trip to film a music video (I know! Our very own song, too!) Many of the students are very independent, bussing to and from class, socialising at the Mall after class, making plans, hanging out.

On our way back to base, we pass the Mall (it’s very close) and a student from my car asked to be dropped off. She’s super-independent and capable, so that was no problem.

As were were traveling in convoy, my colleague also stopped, and one of the students in his car said he was meeting him Mum at the mall, so could he get out too.

My colleague checked with me, I asked the young man directly and he looked me in the eye and assured me, most emphatically, that yes, his Mum was meeting him at the mall too. I told him, “Ok ; I’ll ring your Mum as soon as we get back to base and tell her you’re at the Mall already”

He gave me a thumbs up and got out of the car. We drove to base, where I rang his Mum, who said “NO! He’s getting picked up by a Support Worker today”

I raced back to the Mall and the next three hours were absolute hell as his Support Worker, His Mum, my colleague, Mall Security and the Police searched Malls, addresses and streets.

After three hours we was found by a Policeman. He’d walked miles and miles and was nearly home. He hadn’t even gone into the Mall.

It was incredible traumatic. His amazing Mum didn’t blame us in the slightest; reassuring us she knows how convincing he can be.

(Nice as she was, it was totally my fault)

We should never have believed him. But we did.

Lessons learnt for sure.

Last night I rang the mother of the other student I dropped at the Mall. She’d seen us looking for her classmate, had seen how upset I was, so I wanted to let her know he was fine, and I was fine and everything was fine.

This other wonderful, kind Mum also reassured me that it wasn’t my fault (although ultimately of course, it still is!)

But we Special Needs Mums are pretty good with each other.

She told me that despite her daughter’s apparent abilities, she was still good at seeming to understand, appearing to cope, saying what she thought people wanted to hear, tricking people into letting her do things, getting her way.

She told me “They get told all the time, they have rights too. That they can make their own decisions, they can be independent. They believe it. But sometimes, their judgement isn’t good. It’s tough. It’s really hard to draw that line because they’re convincing and they’re convinced.”

Yesterdays story had a happy ending.

So I was hoping the other would too.

But today I returned to story one, my adult female student with a boyfirend, to find it’s over. She’s being moved tomorrow. I won’t see her again.

She has found the first person in her life who loves her more than anyone else in this world – and her legal guardian is moving her away from everything, because she doesn’t think it’s appropriate she has a boyfriend.

Everyone is devastated. Tomorrow she’s moving out of the only home she’s known for 28 years against her will and for the most snivelling of reasons.

What can I possibly take away from all this? Is the idea of people with ID having rights just a piece of glib mission statement?

Is it OK that we can tell people they have rights but then overrule them, because we think we know better?

It’s a hot sticky mess and all I know is I’m a parent, a teacher and a friend of people with ID and with each of those roles comes a slightly different perspective.

But the notion that someone thinking a grown woman with intellectual disability shouldn’t be allowed to have a boyfriend with whom she holds hands and is told she’s loved because it’s not “appropriate” is depressing.

And the fact that her life disrupted and her happiness shut down because of it is shameful.

A Good Life

It seems incredible to be saying it, but Claudia has now left school. Forever.

Two kindys and four school later, here’s what I’ve learnt;

1/ Schools are one place where Trickle Down is evident.

Good Principals’ high expectations around inclusion filter down into a gloriously positive staff, happy classrooms, calm school communities, rainbows, unicorns and the whole sha-bang where everyone feels truly valued and real learning and education happens.

Appalling Principals are black holes of agony; blocking joy, happiness and learning at every turn. Their suspicion of difference and fear of “outsiders” having some say over things is especially evident in small towns.. Here we saw conscious exclusion of people who didn’t look or sound the same, of people who had different cultures from the dominant one.

Clusters of unhappy “others” gather in pockets in schools like this, wondering how this school can possibly educate people they fail to accept. The attempts of well meaning staff further down the pecking order made no real difference. There was no trickle up. The tone is set and its impossible to change. That’s when you leave. You can’t change a shark.

2/ We are still – after all these years –  talking about Special Education as opposed to Inclusive Education, even as the people in Special Education are claiming they are all about inclusion.

3/ Inclusive Education benefits all students in the classroom. One more time for people like Michael Laws – ALL children in the classroom. Don’t argue with parents of disabled students on this one. I guarantee we’ve done the research about where our children will do best and this is the answer. The fact that all children do better is an added bonus, don’t you think? People who maintain the fear that disabled children in class suck up all the attention can rest assured, that’s not the case. Not. The. Case. 

4/ Teacher Aids are invaluable additions to the classroom for they not only aid and support the children with disabilities, but they are confidante, assistant, social worker, parent, and Fairy Godparent to the other teachers and students. Having more adults in a classroom to give attention when and where it’s needed is a good thing.

Claudia’s Teacher Aids had such mana within the classroom and provided such excellent extra pastoral support for all the students, Claudia being in the class was seen as a bonus by many parents at her primary school. Win-Win-Win and everyone is Happiness Filled.

5/  It stops. It stops for school holidays and that’s usually a bit of a shock. But one day the holidays will be over and you won’t go back, and many parents try not to think about that time until they have to. Well, we’re here now, and at 19 years old, the time is now for Claudia and it’s stopped for us forever.

So what’s next? Asks everyone.

Not sure, actually. But we’re getting there.

“Enabling Good Lives” is a post school opportunity currently available in the Waikato and here in Canterbury. It’s a programme where all the bits and pieces of her financial entitlements and education funding go into a single pot which we then divvy up and spend where we decide her Good Life is. Easy!

Now all we have to do is design A Good Life for Claudia.

So, what does A Good Life look like?

Claudia’s idea of a good life would no doubt be staying home all say ordering cheese toasties for lunch, hanging on her computer and falling asleep in a big hot bath at the end of another taxing day watching You Tube.  My life would be reduced to fulfilling my duties as her personal slave, all day, every day.

My idea of A Good Life for Claudia includes more lofty aspirations like “meaningful engagement with her community” and “broadening and extending her learning through diverse opportunities” and “the opportunity to form and maintain real friendships with her peers in a natural setting”

But what communities? What opportunities? What settings are these?

OK so it seems I just have goals. What I need is actual places and people for Claudia.

It’s a great opportunity – and a huge challenge.

Despite Enabling Good Lives having been rolled out for several years in Canterbury, my experience so far is that providers of experiences, vocational day bases, agencies and trusts are scrambling to be responsive to what people want without committing themselves too much to detail.

For instance, as I’m “shopping” at an agency for Claudia to spend time, I ask what the weekly programme looks like, so I can see if there’s anything there that excites me and would excite her.

And the response is usually they do a “variety” of activities and can tailor things to suit her.

Sounds super-flexible. Except thats what I thought we were doing (looking for a variety of activities and experiences to suit her)

But I’m getting there and booking in some activities which have sprung up organically from the desires of other people. These are made real, often by parents, and gain traction and definition as more people find them and join in.

When we break it down, a Good Life after school is not dissimilar from a Good Life at school.

Access and participation in friendships, fun (laughs) activities to entertain, opportunities to extend, an education programme to increase literacy and numeracy, time to relax and a health and fitness programme to maintain quality of life.

And hey – if I’m having trouble identifying exactly what agencies are offering on which days and what times, then what a problem to have!

Only a couple of generations ago Claudia would have been whisked away and put into an institution where she would almost certainly have been subjected to abuse. No-one would be asking if her Good Life  included riding, swimming, cafe outings, air hockey and field trips.

We’re lucky we’re in Canterbury and can access EGL. We’re lucky it’s been going for long enough for some of the teething issues to be ironed out, but not so long our experiences can’t be part of the future model.

We’re lucky we’re in New Zealand, where, despite chronic underfunding in health, we still at least have funding. Where, despite the fact there won’t be enough money in Claudia’s pot to buy her a full time week, or even the equivalent of a school week, she gets some say over where and how her days away from home are spent.

And we’re lucky because Claudia is part of a surge of greatness in this country at the moment.

Now is a GREAT time to be a young woman in Aotearoa.

From Jacinda Ardern becoming Prime Minister and calling out sexist old broadcasters, to our Black Ferns winning sports team of the year and starting the conversation about women’s pay in sport.

From Lorde for not selling her sexuality to sell her talent, to the Silver Scroll finalists all being young women to Kanoa Lloyd telling it like it is on prime time and calling officials to front and be accountable.

Passionate, articulate, talented women not putting up with shit any more.

Like I said, just two generations ago Claudia’s life would have pretty horrible.  But now, as we create her Good Life, I’m confident there’s never been a better time for young assertive women to be young and assertive, and for someone like Claudia to be someone like Claudia.

Merry Christmas from Claudia, seen here enjoying her favourite people and favourite foods at her Annual Sausage Roll Christmas Party

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.

 

 

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.

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.