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.