Downsideup

I’ve got a stack of reports I’ve collected over the almost 6 years I’ve been caring for my oldest boy. There’s letters confirming this diagnosis or that. There’s entry and exit reports, speech, OT & physio reports, school reports, IEP’s, EAP’s, progress reports – you name it, someone wrote a report about it.

a child with a disability needs a lot of paper!

 

Last week I received a copy of some recent reports from the education department who go through a process called ‘verification’ to confirm that your child has a disability and that they are attending the appropriate educational facility. My little guy has been verified in three different areas – his autism, his visual impairment and his intellectual impairment.

Now you don’t get to this point without knowing that he (and I!) have some pretty big challenges ahead. But seeing their assessment of his intellectual impairment was one of ‘those’ moments. Sobering. It had never been officially confirmed before now, it’s so hard to really know or to accurately assess when their communication is so limited. So seeing it in black and white, in no uncertain terms – felt like a blow.

Autism is so unique and variable. I have met and read about and marvelled at some of the most wonderful people who have autism. I know that for some – there is a key that can connect our worlds. It may be an ipad or music or painting or maths or cars or even medication. You may find that key when they are young or later in life when they blow your mind by communicating and connecting in a way you never thought they would or could.

Finding that key is a parent’s life mission. But it can be a shapeshifting, mysterious, enigma wrapped in a riddle kind of key. You have to keep believing that it exists, despite the reports. That’s what will keep you getting up in the morning and starting the day with a hopeful, optimistic view of the world while also enjoying the beautiful child – in all their challenging glory – that you have in front of you day to day.

So, I’m processing all this and thinking about what it all means. I’ve been mulling it over for a week now and the thing I keep coming back to is this – reports, assessments and diagnoses are not true representations of the whole person. They are only looking at a snapshot in time or a point on a bell curve or a tick in a box. My little boy is so much more than that. His life is far more meaningful than that. And most importantly, his potential is unknown and this cannot be reported on or assessed.

There are so many amazing examples of people who have been ‘written off’ by the professionals, but who with perseverance (something autistics specialise in!!!) and loving support amaze and inspire us with their contributions to the world, their strength of character and their willingness to beat the odds.

I was looking for some examples of this today when I remembered a truly remarkable young Australian man – Luke Vujicic. If anyone can make you believe that we all have a place in the world, that we all have unknown potential and that as a parent it’s my job to help all my kids to explore that, to pursue it, hunt it down and wrestle it to the ground and enjoy the process – then Luke can. Watch this! (sorry about the advert that kicks it off).

Luke Vujicic

 

 

 

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Cars I Have Killed

I recently picked up our new (for us) car. Oh boy, has this been a long time coming. The car that served us until recently has done the job for over 10 years and has slowly but surely deteriorated. So that when, a couple of weeks ago I attempted to reverse out of my very narrow, under the house drive way and almost ripped the (accidentally) open rear door off it’s hinges. Ooops! This was the tipping point.

That just added to the rather long list of things that needed ‘doing’ on this car. I was not going to spend another cent on it. Rego was almost due. Time to act. I knew what I wanted and the field was pretty slim. I wanted a 7 seater that would fit in that narrow, under the house drive way/garage. Not too many options, but that did not worry me in the slightest. I’m not really what you would call a ‘car person’.

Cars. I start out determined to look after them, but that determination is slowly but surely replaced by the old familiarity. Yes, the one that breeds contempt. I have to say that having a car for 10+ years is a complete record for me. So I’m improving, but it did make me think back over the years and all the various cars I have had…and killed.

As a young whippersnapper of 18, my first vehicular purchase was a motorbike for 500 bucks. A Honda 250. That was fun! Luckily it didn’t kill me! Then I went and bought a 10 speed bike and rode it a LOT (more on that another day). I moved onto four wheels when at 21 I had returned from travelling through Europe on 20cents a day and decided to drive from Sydney to Perth on a whim. Possibly another dumb idea, I’ve had a few over the years. Looking back though, this was one of my best cars.

about halfway from Sydney to Perth, at Ceduna 1982

It was a Holden HR ’66 bought for a grand. The following week I headed off into the wild blue yonder with a mate to drive 4000 kilometres plus in round figures. The car didn’t skip a beat, but we did have to change a tyre out on the Nullabor Plain, which is literally the middle of nowhere. This is where the longest stretch of straight road in Australia lives. Sold this lovely car to some guy in Perth before I flew back to Sydney about 6 months later, so I didn’t really have the chance to kill this one. Lucky, cos it was a classic.

Next I bought a little Mazda 2 door coupe off some friends ($300?) and it went for a few years. It did a lot of hard work driving me and my friends around to various venues, dives and clubs all over Sydney. We survived but it didn’t. It had an old rotary dial gold phone (this was well before car phones) which didn’t work of course and a speaker built into the heel of an enormous platform heel from which you could listen to the AM radio. Style and class – that’s me!

Just like this one. Wait…I think this one IS it

A couple of years later when I was on tour in Melbourne, I bought a Peugeot 505 on a whim (shakes head in disbelief) from a very shady character. I was very pleased with myself for about 24 hours. Then it started blowing smoke…badly. I took it back to the guy and accused him of ripping me off. He threatened to go and get his gun if I called him a liar and a cheat. But he eventually came around and swapped it for a Fiat. Oh dear God! It should have been a Citroen as it was a complete lemon and cost me a lot of money. I gave it away, telling my friend who took it to NEVER bring it back.

Mine! for 24 hours

My next choice (!) was the tiniest station wagon in the world. A Mazda that I bought off a guy who had named his little boy Elvis. That should have warned me, but no…I was oblivious and besides, I never had much money. Or lets just say I had more important things to spend it on. I cooked it’s tiny little engine lugging band gear around.

road trip with Duxie ’87

The next car, I got a bit of help from a friend who knew a bit about cars. I ended up with a 2 door Corolla hatchback, vintage 1980. It did pretty well ferrying me back and forth from my little country cottage in Bangalow (near Byron Bay) to the university in Lismore  – a 30k one way trip through beautiful rolling green hills. I was studying music and I was always squeezing various other poor musicians and their instruments in. Got a double bass in there once. This car survived my 3 years at uni but was in pretty poor condition by the time I finished.

With some more guidance, I bought a car that I actually loved. A Peugeot 504 ’74. I was never into naming my cars, but this one was dubbed ‘Rose’s Blue Sports Car’ by a friends little boy. I think he may have loved this car almost as much as me. Beautiful to drive, solid on the road and built for comfort (a bit like me!). This lovely car hung in for quite a few years – moving with me to Melbourne, then to Darwin. But…I sold it when the band I was managing was about to start touring. (Warning, band managers should never buy vehicles for their bands to tour in…results in certain car death). My blue sports car went off to become a rally car…

Driving to Melbourne with all my worldly goods including my tennis racquet (?)

Yes, I’m an idiot. I bought a Nissan Urvan which became the vehicle we drove on numerous tours with the Wild Water band (more about them one day…). We would squeeze six of us, all the band gear and luggage in and on top. It would take us three days of solid driving to reach our first show and by the time we’d made it back home, we would have clocked more than 10,000K (6,250 miles). That van worked hard for the money, believe me.  I did sell it before it died. Its amazing what some people will pay actual money for.

Wild Water boys at Bondi Beach

beware! especially at night

I went carless for a few years. That helped.

I got back on the road when I bought a Honda Prelude. Bet you didn’t expect that! Neither did I. Got it in immaculate condition, sold it to a friend a bit worse for wear. Not entirely my fault – someone backed into my parked car. It took me about two years to get the money off them but now I know all about the petty claims court process.

Which brings me to my most recently deceased. A Ford Falcon Forte station wagon. I bought it thinking I wanted a completely bland, run of the mill vehicle – kind of like a hire car. It was the most expensive, youngest car I’d ever owned. It was solid, reliable and rarely had any problems, which is pretty good for 10 years under my loving care. But it worked hard. Many, many children and a lot of musicians transported to and from their places of work & education. By the end, the roof lining was sagging, the key transponder didn’t work, the engine needed some investment, it was heading towards 200,000k and as I mentioned, the body had suffered an injury. Thanks, it’s been swell, but hello new car!

the Avensis

It’s a Toyota Avensis 2009 – a 7 seater which means my boys have a bit more space and my big boy can be in a row by himself. Just that in itself is a massive relief. No more scratching and pinching the little guys in the car Mr L!

I promise to service you, clean you (inside & out) and ….oh….who am I kidding?

You Changed My Life

It doesn’t happen very often these days, but on Saturday night I got to go out see a film. The big boys were having overnight family visits and a beautiful friend offered to come over and babysit the baby.

In my life B.C. (before children) I would regularly take myself off to see a film. I enjoy going to see films by myself. The big screen, the surround sound, the quiet hush of a bunch of strangers sitting in the dark for a shared experience. It’s a little holiday. If it’s a good film, it’s a great little holiday. If it’s an exceptional film, then it’s a 2 hour, all expenses paid, luxury, beach-side indulgence.

I got to see an exceptional film. I may have even got a sun tan.

The French poster

Made by the French filmmaking team Olivier Nakache and Eric Toledano, The Intouchables is set in Paris. So yes, it involves subtitles but forget about that because you won’t even be aware of it after the first minute. If you’ve never seen a film with sub-titles before – then this is the one to go and see!

The story is based on the real lives of Abdel Sellou and Philippe Pozzo di Borgo. Phillipe is a very wealthy man who suffered a spinal injury. He took a risk when he hired Abdel, a guy from the ‘projects’ as his personal carer. So ultimately it’s a buddy film but at the heart, it’s a comedy! When Phillipe granted the film rights to Nakache & Teledano that was one of his stipulations. He wanted a good movie, a funny movie & a deep movie. He got it.

Neither man could have predicted the impact of the friendship that developed from the chance that Phillipe gave to Abdel. But the title of the book that Abdel wrote ‘You Changed My Life’ says it all.

Abdel and Phillipe – changed each others lives

Omar Sy. Wow! If you haven’t ever heard of him, well then – you heard it here first people. His performance in this film is dynamite. Because of this performance he has become the first black man to win a Cesar (the French film industry awards). Of course, in France he is like a household name and has his own prime time comedy show on television. Elsewhere he is largely unknown, but not for long. Not for long!

Omar Sy

Film reviews aren’t really my thing, but sharing good stuff is. Get your self out of the house and go and laugh out loud with a theatre full of people. It’s good for the soul.

Video Didn’t Kill This Radio Star

OK, I really should have called this post the ‘Kids in Care Christmas Appeal’, but I couldn’t resist.

Last week the Kids in Care Christmas Appeal was launched statewide here Queensland, Australia. I probably don’t need to spell it out for you, but just in case…they have a goal of providing every child/young person in care with a Christmas present this year.

Typically Christmas time is very busy in child protection. A lot of children come into care and foster carers, agencies and government services are under the pump just to provide or find safe places for these children to stay, even if it is only temporary.

Anyway….I was asked (along with a couple of other wonderful carers) to participate in helping with the promotion of the appeal by doing an interview and recording a few bits and pieces for our local public broadcaster ABC 612 in Brisbane.

So here you go folks…enjoy listening. For those who live in Australia – sorry I sound like SUCH a Queenslander! For those who live in the ‘rest of the world’ enjoy our accents!

Of course, if you are in Queensland, it would lovely if you could donate a present too.

You can find out where you can donate presents here. Presents should be valued at $25 or less, be new and unwrapped for children/young people of any age between 0 and 17.

Margie

We got up, as usual at 5.30am to wave our neighbor Trevor off to work as he rode off on his motorbike. Trevor (specifically) and motorbikes (in general) are major obsessions for my little 2yo.
‘and there he goes….’ this little guy says as if it’s been his sign off line for 20years.
As usual, we made our way into the lounge room and I immediately ‘assumed the position’ (lying down) on the couch while N pulled the cover off our little girl budgie Margie’s cage.
His normal routine is to say ‘hi Margie! How are you going today? Are you feeling better?’ Margie has not been well so it’s a beautiful empathetic and endearing exchange. Doctors, getting sick/hurt and medicine are another favorite topic of his.
But here’s where the usual routine took a turn. ‘I can’t see Margie mum’.
I quickly stuck my head up and checked. I couldn’t see her either. Oh no! I jumped up and could see her lying on the bottom of the cage. Margie had died sometime during the night.
‘How’s she doing mum?’
Not too good darling.
I had to think quickly. What was I going to tell him? He was the one, out of the three boys, who would really care. Who would take every word I said and lock them into that vice-like memory of his for many repeat visits and detailed circular discussions for the next 6 months at least.
I did not dive into that discussion. Instead, I got a little box and put some tissues in it. Then reached in and gently got Margie and put her in her little box. He watched all this, asked to see her. I showed him and told him that she needed to have a big sleep in her special box. We put the box out on the deck, out of the reach of children and any other animals.
He was unsure but happy enough about what I had said. He asked about her many times throughout the morning. It wasn’t till early afternoon, when the boys were asleep that I placed her in the ground.
When he woke, he asked how she was going and I attempted a simple, age appropriate explanation. It went something like this:
Sometimes animals get sick and the doctor can’t make them better. When that happens they have a big sleep and we don’t see them any more. Margie feels better now and she knows that we love her very much.
OK, I know! I couldn’t quite bring myself to say the ‘d’ word. I tried. I almost said it. But in the end I felt like this little guy has enough big issues on his plate right now without having to contemplate the meaning of life and our ultimate demise. I’m an advocate for telling kids the truth. In foster care, those truths can be very hard to hear. Words must be chosen very carefully. Age appropriate isn’t quite enough. You must also be able to shape what you say to fit with where they are in their emotional development which doesn’t always match their age.
We are focussing on Louie – our boy budgie. We still talk about Margie every day. He seems to be coping with her absence reasonably well. Margie is having her big sleep in our front yard …and there she goes…

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