planes and boats and trains

The school holidays are over!

They’ve been over for a whole week and that’s how long it has taken for me to re-claim some semblance of control over how I spend my days.

While other parents relish the stretch of holidays for days long and lazy or

fun and frantic with their adoring offspring , I am reminded how Claudia

(“the dominator” ) is always in charge of what I can do.

It’s not just my time she controls.

As a family, holidays are scarce, not just because of the cost of traveling and family holiday fun (on a single income) but also because of the limits that come with physical and intellectual disabilities.

Taking the family for a days skiing or boating, biking or hiking are just not possible. How we spend our down time is often dictated by how far away from decent toilets (with disabled access) and decent wifi we will be.

Having said that Claudia is great at some travel.

Going long distances by car is fine.

If the Sat Nav is on with its picture of the road and the robotic voice giving instructions about “left” and “right” and “how many more?” and “what’s next” then so much the better.

She’s been known to dial up “drive through” You Tube videos of places as we’re actually driving through them and is obsessed with listing the places we’ll go through before we get to where we’re going.

Trains are  another passion ; she’s been on the TranzScenic from Christchurch to Picton and back – twice – and when she’s not talking about it, wanting to know when we’re doing it again, what’s after “Mina” and “Kaikoura” and how many tunnels there are, she’s watching videos of the train on You Tube.

The trains are warm and quiet (excellent disabled loo!) and offer wonderful scenery.

The outdoor viewing carriage is thrilling and she’ll stand out there, wind whipping her hair, gripping the railings and loving the tunnels for as much of the trip as she can convince us to stand there with her.

The train is a great leveler. Ordinary people waver unsteadily through the carriages, occasionally lurching into someone else’s sudoku, beer or nap.

But Claudia, wobbly on stable ground, strides on through.

Her natural unsteadiness is made smooth by the matching movement of the train.

She’s suddenly faster too and races along in and out of automatic doors and away leaving us stumbling along behind.

These holidays we had a great time with two trips back to Geraldine (and associated social times) and a few days in glorious Hanmer.

Claudia loves baths and the hot pools with their bone deep heat are a real treat for us all. Claudia mellows right out and later on sleeps like a log. Bliss!

Bouquets to the Hanmer Hot Pools for having Special Needs changing facilities.

But it’s annoying they have no hooks or dry seating options.

And really annoying to have to wait in the dark (snowy evening) for someone else to come out.

When he did it was fully able young man who had been showering ; wetting absolutely everything – so Claudia immediately slipped over.

With no hooks there was nowhere dry to put anything, no dry floor to put our bags, nowhere to BE that wasn’t saturated.

It was a cold and damp and miserable end to what had been a magical time.

We despair at the thoughtlessness of people using facilities they just don’t need when they have options we don’t.

This thoughtlessness can totally ruin our attempts at breaks or holidays or new experiences. People using disabled parks “because I’m only going to be a minute” or using disabled loos “because there was a queue” or disabled changing rooms for no bloody reason at all!

By the same token thoughtfulness and kindness goes a very long way toward elevating our experiences from potential nightmare to fabulous.

It’s an indicator of our general stress levels in new and public places that the ordinary kindness of strangers (which really should be a human default position) can reduce us to tears of gratitude.

People really know not what they do.

When we were in Geraldine the local Postie pulled his scooter up beside us for a chat when he saw us. “Hey!” he said – “you’re back!”

I was surprised he knew us – or even that we’d moved away – because he hadn’t been our Postie.

I said yes, we were just back for a few days and that we were in Christchurch now.

That was a great letter you wrote” he said.

Sorry – what?

the letter you wrote to the InterIslander” he said .

Sorry – what?! I said again.  

A friend of his had alerted him to a letter I had written which was then published in the Express, a KiwiRail in house magazine. He’d noted our address and asked if Tony knew us.

Amazing. How bizarre are the ripples of our actions.

I was stunned that our letter of thanks had been published. I’m glad they were so pleased to get it they shared it. I was sad that they must get so few this was seen as worthy of sharing – and I hoped Beverly didn’t mind.

Here is indeed a case where a little thanks went a long, long way!

The efforts, comments, tolerances and actions of other people are a very real part of how things go for us.

Space and time, kindness and support are most appreciated.

If you’re interested here’s a link to Claudia enjoying a recent train trip.

And here’s my letter

To Whom it May Concern

Re Beverly (surname removed here!)

On Sunday November 30 my two children and I travelled from Christchurch to Picton via the Coastal Pacific Train, then boarded the Ferry to cross to Wellington on the 1.15 crossing.

My 16 year old daughter has intellectual and physical disabilities, which makes flying impossible as she gets too stressed. She has travelled by train before – and loved it – and I thought she would love the ferry too. I was wrong.

Party due to her tiredness (we had to leave home at 4 am to drive to Christchurch to catch the train before arriving in Picton to join the InterIslander) and partly due to her excitement – but mostly due to her own unique reactions to some pitches, she found the low rumbling frequency of the engines intolerable and was moaning, crying, unhappy and desperate from the moment we left the haven of the Picton harbor.

I too was exhausted at traveling with Claudia, and simply could not find anywhere on the Ferry for her to sit in peace or any way of comforting her.

Then an Angel in the form of Beverly (name removed here!) found us, quickly summed up our needs and provided us with a private room where I could encourage Claudia to lie down, could tickle her back and sooth her until she went to sleep. I literally wept with gratitude. She brought us drinks, popped in to check on us and when the time came to approach Wellington showed us to a quiet private location where once again we could relax and appease Claudia without upsetting anyone else.

I honestly don’t know what I would have done without Beverly’s quiet, assured, positive response to us. She was so professional yet at the same time so kind, reassuring, considerate and solution focussed.

She even asked when our return trip was – and sure enough when we boarded for the return trip 4 days later, there was Beverly waiting for us and showing us, once again, where we could be in peace for the journey. She went above and beyond when she offered my children a visit to the Bridge. My son Jasper (12) is compromised by his sister , as we all are. He has got used to the stares and rarely complains but as we are all curtailed by her tolerances – he especially wears it when we’re attempting to get breaks from home. Being on the Bridge and meeting the Captain has made him the absolute envy of his friends (and many adults!) In addition Beverly arranged for us to be first off the boat in Picton.

It virtually NEVER happens that being “special” has a positive effect. In this case, thanks to Beverly our trip turned from a potential nightmare into a highlight of our time away.

You could not have a better ambassador for your service. I just want you to know how people’s attitudes make or break us and I cannot speak highly enough of her dedication, professionalism, attention to detail, thoughtfulness and attitude,

Please ensure that the people responsible for employing her get our thanks and please pass on to her our sincere, heartfelt thanks.

Yours sincerely