Physical Signs Of Affection

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

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

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

And he’s showing no signs of letting up.

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

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

2/ School’s back!

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

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

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

Nigel.

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

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

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

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

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

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

Just ask Trevor.

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

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

Any ideas gratefully received.

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

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

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

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

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

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

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

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

Culture of Entitlement

 

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

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

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

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

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

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

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

And I’m pissed off.

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

Smith was “Dumb”

Did Smith Do Anything wrong?”

Full witness account”

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

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

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

(Stuff)

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

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

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

how the bloody hell dare he?

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

But where is the moral outrage about that?

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

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

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

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

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

Still not that Special

 

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

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

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

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

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

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

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

I’m so tired of it

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

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

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

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

That’s Claudia and her peers.

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

I’m so tired of it.

Support translates as money. What we need is money.

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

In every school.

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

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

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

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

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

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

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

I’m so tired of it.

A Relaxed Performance

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That isn’t an opportunity we get very often.

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

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

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

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

It is very much appreciated.

Where is the bar?

 

The holidays are over and tomorrow school goes back. I’m so relieved.

I’ve had two weeks of torturous assaults on my eardrums as Claudia fires off commands and comments to me without pause for breath and in ever increasing volumes until I engage.

She’s relentless. She’s loud. She’s repetitive. It’s really annoying.

So tonight I’m raising a glass to the teachers and teacher aids who get to spend each school day with her.

And here’s especially to the eternally cheerful and optimistic language they use to describe my repetitive, loud, demanding child.

Her end-of-term report had us snortling into our pinot with their kind and creative descriptions of how she is.

The bar can be pretty low when it comes to people like Claudia.

The aims on her report are not complex – for example ;

‘Goal 1 : Claudia will use simple (2-3 word) sentences when asked questions about her day with 60% success”

We were weak with laughter as we read

Claudia initiates conversations by repeating single words to a variety of staff throughout the day”

That makes it sound almost tolerable and kindly glosses over the chainsaw-like reality of the relentless repetition.

iPad! iPad! iPad! iPad iPad! iPad! iPad! iPad!” iPad!” We know what it’s like.

Before leaving school Claudia has started to wander the halls to say goodbye to her peers and staff before leaving school”

Bye!” “Bye!” “Bye!” “Bye! “Bye!” “Bye!” “Bye!” –

-we can so imagine the trail of loud as she “wanders the halls” firing off her single word like the assault weapon she is.

Claudia enjoys discussing her and her peer’s timetables throughout the day”

Claudia has always been interested in the time and the date and the day and what might be happening. She’s beside herself as any given month ends and the calendar needs changing

Ahh!” (as she points) “Change Over!”

In the car she’ll suddenly shriek from the back seat

Ahh! What time is it?” as she points to the digital clock, which will invariably say something fifty nine. In other words she knows that after 59 the whole hour changes and that’s worth pointing out. Loudly.

She shamelessly rifles through other people’s diaries looking for interesting events or things to note.

It’s the same with calendars, whiteboards, lists, the mail.

So it’s no surprise to know she enjoys checking out everyone’s timetables each day.

And bless them for framing it as if she’s discussing it when we know that she’ll just be barking out what she finds.

Claudia will use a simple sentence to as for her iPad during free choice time”

I’m sure it’s a very simple sentence – ‘iPad! Ipad! Ipad! Ipad! Ipad!”

– over and over again.

Now she’s 17 and a senior there are “outings” into the community.

Each Wednesday there’s an outing to a cafe – which Claudia mentions a lot in her weekly run down of what’s going on – indicating she enjoys it.

During these experiences Claudia makes choices about what she wants by looking at the food on display, pointing and using simple sentences with support”

Gosh these teachers are lovely! In reality this will look like Claudia tapping her grubby fingers on the display case and shouting “lolly cake!” or “soss roll!” until it’s on the plate.

another activity Claudia enjoys and talks about throughout the week is the class weekly swimming session”

She does talk about it all week – she does that here too – reminding me she needs her togs.

Claudia also enjoys the opportunity to have conversations with other staff and students during the swimming session”

I feel for those staff and students, looking forward to a gentle waft in their rings down the lazy river but instead encountering Claudia shouting things at them from her ring – all amplified, as things are in an indoor pool environment.

All there together bobbing about. With Claudia. Being loud in the water.

Apparently Claudia participates in cooking by putting on her apron, she enjoys the discos at school, she enjoys walks of “varying length”, she “chooses to participate by watching through the hall windows”.

So much carefully worded and so much positivity.

So cheers to you lovely teachers and teacher aids, who find the kindest and most creative ways to describe our children. We appreciate your tact. We salute your creativity. We drink to your health.

When the bar is low you manage to make the bar a relevant, funny and great place to be.

So cheers and thank you.

Doing The Job

 

It’s been a while since I’ve had time and inclination to tap away with another “peril”.

Last time I was heading off into the great world of full time work for the first time since Claudia was born.

Thanks to all the ducks being lined up and perfect timing all around it was all smooth running as far as family life was concerned.

My work is nothing to do with the world of disability.

I think the work I do can be enhanced by my experiences with having a differently abled family member and I know it has helped me connect instantly and warmly to interview subjects when we discover there is that shared experience.

But I don’t routinely support people with disabilities in the course of what I do.

But for other people disability is their job.

Not just those initial medical specialists we first encounter but everyone who assesses us and then delivers services to us.

Because these services are often “free” it’s easy to feel beholden to those who are providing the service ; assessments can feel like judgements and delivery can feel like a favor.

It took me years to remind myself that it’s a job for these people ; indeed these people only have their job because of people like Claudia.

People like Claudia provide the need for the job and the context of the job and providing that service to people like Claudia and families like ours is something they are getting paid for.

They can go home and sleep through the night and get annual leave and sick days and all the lovely things associated with having a paid job with set hours and scheduled respite.

Not like the parents of children with special needs. We come home after a days work to a whole different kind of work. Not relaxing.

So it’s really, really annoying when the people who get paid to provide the support – don’t have the knowledge they need to provide that service.

Over the past 24 hours a parent has been posting on a Facebook support page for parents like us – upset at the dismissive attitude she’d encountered when she asked about provision of nappies for her son.

She had been told by her continence nurse that that’s what the (meagre) Child Disability Allowance is for.

Only it’s not.

Children with special needs bring all sorts of extra costs and nappies/pull ups and continence products are a huge one. You’re struggling with the cost and hassle for years longer than other people – hell Claudia is nearly 18 and we’re still having to manage it!

And when your child grows out of the sizes of nappies and pull ups you can get at the supermarket you move into specialist, costly, hard to find products.

Being a “Continence Nurse” is a job. To support parents with strategies to continue to try toilet training and to match the best products to the child and situation. These products are subsidized.

So when a parent has been on the receiving end of having it made “very clear” them they’re not entitled to any support , is told to “go over my head it you’re not happy” given the name of someone else to “take it up with” – I find myself asking – “ Isn’t that YOUR job?”

Because along with everything else disability brings, toileting another whole human being takes a freaking long time. It’s the most unglamorous you can be; kneeling on a bathroom floor, taking shoes and trousers on and off.

Once you add public lavatories (shudder) or single cubicles it’s another whole level of parenting. It’s hard and time consuming. It’s unpaid.

Parents shouldn’t have to then chase around to check and double check this information. They shouldn’t have to make phone calls to DHB’s and WINZ to try to clarify the requirements. All for 4 extra nappies a day.

Our days are full enough!

There was a swift response on social media from other parents, prompting an impromptu survey, clarification, discussion and revealing that failure of professionals to understand the rules around the entitlements within their own job descriptions is one of the most frustrating things we have to deal with.

The worst thing is the dismissive “take it up with someone else” attitude.

No, you support professional, we’re busy supporting our child, how about, if you think it’s unfair or inconsistent – or you’re unclear – how about YOU take it up with someone else on our behalf. How about providing the support you’re paid to.

So the parent here was right, her child is entitled to 4 more nappies a day.

Great. Only did she really need to go through all that to have this extra stress and time consuming hassle to get this clarified?

Wouldn’t it be nice if the person whose job it is to provide continence advice and support to the family actually did that job.

Knowing the rules would be a good start.

But being prepared to find out and advocate on our behalf would be even better.

Last Days

Lately I’ve been a bit ranty in the privacy of my own head, about the current trend for everybody being interviewed anywhere at any time about anything to begin their answer with “So…”

It’s been bothering me. But now I find myself with no better word to begin with.

So. Today is the last day of the holidays. Not just the holidays – my holidays.

After 17 and a half years of raising a child with special needs I’m returning to full time work on Monday.

So. This is it. That unimaginable day.

I feel I should be tripping hand in hand with my children around all the holiday activities on offer in Christchurch. But Jasper is away with a friend having a lovely relaxing lakeside holiday and Claudia is still recovering from her latest general anesthetic, three days ago.

She’s been pretty much sleeping and dribbling ever since, eating (spaghetti, yoghurt, weet bix) but not drinking.

My last day as a stay-at-home- Mum is being spend bribing her with the iPad-for-sip-of-water trade off and a shit-load of washing. Also Typical. For us. Normal. And nothing like a blimmin’ holiday.

The offer of full-time work came suddenly and unexpectedly. I blinked for several moments and then in a miraculous moment of clarity realized that yes, I could.

Since moving to Christchurch we have been slowly but surely lining up the Claudia-transitioning-into-adulthood-ducks.

Including moving into the individualized funding model of support and finding a wonderful support worker independently of an agency. Because we’re grown-ups now!

What Claudia’s increased independence from us has meant is that my time could be more my own again and I heard myself assuring my prospective employers that yes, I could indeed take up this,

I was ready to return to work full time and things at home will be fine.

Looking back, this is a point we have been vaguely working towards – and here we are, with perfect timing.

And it has caused me to look back.

Raising a child with disabilities is bloody hard work.

Its physically and emotionally hard. It’s relentless.

It limits everything about your day – you are never in control of your own time when you are managing another whole human body in addition to your own.

It’s unpaid.

Most families need two incomes to live comfortably these days.

You’d need to be earning a huge amount to make paying someone else to care for your difficult child while you work worth everyone’s time and effort.

And coming home to a disabled child after a hard day’s work simply means you still have a nights work ahead of you.

Disabled kids are hard on relationships. Ordinary stresses; money, siblings, time, exhaustion are amplified through disability because there is no escape. You can’t change the one thing which would need to change to make things different.

Some sites quote stats as high as 80-90% divorce when a child has a disability.

How Steve and I have managed to stay together through all the usual stresses plus blended families and then disability is amazing. We may have dodged that statistic because we never married!

It is perfectly usual to find Teacher Aids at schools who are solo parents of children with disabilities. If they want to work and they’re not teachers themselves, it is a job which suits their own families and at which they are expert.

But they’re notoriously underpaid and importantly don’t get the break from disability that we all need.

Parents of children with disabilities are not supported enough. They’re just not.

Don’t tell me about how lucky we are in New Zealand because someone in England gets nothing like this support. That’s sad for them but nothing to do with here and I live HERE.

Don’t tell me we’re lucky it’s not the “old” days where “kiddies” like ours got put away because, ghastly as they old days were about many things, we’re not there now and I live NOW.

Don’t even tell me it’s lucky there’s two of us because I can tell you that when one of you is working full time and stressing about earning enough to support a large and demanding family – the division of labour become very traditional indeed!

And don’t tell me I’m lucky to get to be at home every day because it’s not through choice.

I would have happily exchanged being able to do the work I love, adult company, work problems and some money for days at home washing faces, sheets and bums.

Families like ours need more help.

They need to be able to accept that help with dignity.

They need to be able to enroll their child at school without people wondering aloud how the normal children will cope with it.

They need the respite hours they are entitled to not to be allocated according to how badly they present their situation, but by the actual reality of their conditions.

They need to be assessed by people who don’t make them feel judged and they need any allocated support to be actual minimum wages for people, not just a “contribution towards”.

Otherwise what should be real support just becomes real extra money families have to spend to supplement the wages of people who they can’t actually afford to employ.

And these people are not just babysitters because these families have members whose needs are usually complex and sometimes severe and always require high levels of attention and who are all more than usually vulnerable. For ever.

It’s hard to find people to fill that role for less than the minimum wage.

Families who live with disability need to have it understood by families that don’t live with disability, that they don’t get breaks so if you can give them one do it ; just them give them a bloody break.

Income splitting would go a long way to help families on a single income.

It wouldn’t be hard to manage; we’re all in the system anyway and it would be one instant way to help families manage better. But while people have talked about it, nothing has ever got done.

Like so many who end up representing us, in government, on councils, advocacy groups and school boards – so many people come in, fill in their time and then go.

And while they talk about real positive change the only thing that ever really changes is that those people move on, the next lot come in and begin their rounds of consultation, their reports that confirm we’re stressed and the systems are failing, then they argue about money, then they leave and the next lot come in and the process starts again.

And the families are still sitting there growing more cynical. Can you tell?

And the worst of it is that looking after someone with disability and not working for yourself and having a generation of strangers representing agencies coming to you to judge you and your family and your situation is just so bloody demoralizing that I can only express all of this now it’s over.

Now I have a job of my own back in my chosen career the opinions of those others matter less.

Their judgements matter less because I feel less beholden now and that’s staggering to me because I hadn’t realized how vulnerable we all have been through our vulnerable daughter.

Wish me luck for Monday! It will be a massive change for our family – but one we’re ready for.

(Lizzie H this one’s for you. Great to see you the other night after so many years, to be reminded I haven’t posted for ages and to discover I’ve helped a little with this little blog.

I won’t leave it so long again x )