All You Need Is Love & Laser Beak Man

Last weekend at TEDX Sydney at the Sydney Opera House, two people I love very much took to the stage and squeezed their inspiring and uplifting story into the confines of a 10 minute (or so) presentation.

Tim Sharp is a wonderful artist who created a superhero called Laser Beak Man at age 11. Laser Beak Man is funny, irreverent, cheeky, kind and so very loveable. Tim is all those things too, but he is so much more. He also happens to have autism.

Judy Sharp is a mother. She is also a survivor. She has singlehandedly raised both her sons to be good, kind, thoughtful and generous men. That in itself deserves a standing ovation.

Tim & Judy Sharp together are a force of nature. Undeniable and impressive. This will make your day. It is hopeful and it is powerful. Their story will get you through those dark days when your child is screaming and kicking and terrified and confused and overwhelmed.

Tim & Judy Sharp at TEDX Sydney (once you click through, go to the right hand arrow to find Tim & Judy’s presentation)

Tim & Judy TEDX Sydney

Tim & Judy TEDX Sydney

Laser Beak Man knows iT!

Laser Beak Man knows iT!

 

Oh Mona!

Day 12
Today we found the best sensory room I have yet to experience. L loved it! We all did.
It was at MONA the museum of old & new art.
We called it the ‘pink & blue room’. Here’s why:

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We had so much fun there. We saw things we’d never seen, we were amazed, delighted and at times confused.
I love seeing kids experiencing art. They are so fresh & honest in their response. I felt like a kid too as we went from room to room seeing the unexpected & the unbelievable.
For an autistic kid there were many wonderful experiences – everything from jumping on a sky high trampoline overlooking the Derwent River to watching jungle book surrounded by some of the original character drawings to a large dark room full of old lounge chairs & old tv’s (screen heaven) to the fabulous pink & blue room.
Oh Mona!

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The Mysteries

I’ve been busy falling in love with a little girl who is now 11 weeks old. We know each other much better now. She’s responding to the sound of my voice, smiling her big, squishy smiles at me, looking deep into my eyes for connection, love and delight and taking my every waking moment (and quite a few sleeping moments as well). She is growing like a weed, needs LOTS of cuddles and has the most amazing head of thick, soft black hair. While all that loveliness has been happening, there’s been a lot of other things happening as well.

A couple of weekends ago I spent the weekend up the coast in a beautiful lakeside location. A dear friend’s partner had passed away very suddenly and this was a chance for friends and family to come together to acknowledge him and to say goodbye. I didn’t know him well as for most of the years they were together, they lived in a remote location. But listening to the stories of his family, his close friends and colleagues, I was struck by how many things we had in common: we were born in the same year in the same small, north Queensland town, we lived a couple of streets from each other, we went to the same school and for the last 8 or so years, he managed an organisation that was established by my father. You can’t help but take stock of the things that are important to you when life’s tenuous fragility is once again made plain and simple: this is it, this is your life, live it now, don’t wait for later.

Don't wait

 

 

Lake Cootharaba

Tim

Photo a day in april for autism acceptance

It’s the last day of April. So, my final post in this series.

There are many things that i like about living in Brisbane, Australia. I love that we are not in the biggest or most famous city. I love the architecture, the music scene, the arts community. I LOVE that I live in a city where we have a bridge named after a band (the go betweens).

I especially love that Brisbane is also home to Tim Sharp. Tim is a wonderful artist and also has autism. Tim is so loved by our community here that he was named in our top 50 happy list – for the joy and happiness he brings to so many.

In the first week of April one of his art works was projected up onto one of our beautiful old bridges. It really speaks for itself – it looks absolutely amazing.

Thank you Tim for all that you do for the autism community. You and your incredible family give so much hope and happiness to the autism families here and around the world.

And with that – April is officially over!

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Photo credit: Mark Pitt

Pinchy Playgroup

On Saturday mornings we go to an ASD playgroup. It’s a small but important part of the Australian government’s program of support for children with autism and the families that care for them.

A while ago N who is 3 and neurotypical (NT) started calling it Pinchy Playgroup, because our asd boy L is a bit of a pinchy boy. Not half as pinchy as he used to be, but you know how these things go – a name like that sticks around.

It’s a lot of fun and some days (like today!) it’s just what we need. The boys get to have lots of fun and I get to hang out with some lovely parents.It’s only for a couple of hours, but it makes a nice dent in Saturday morning and the boys are beautifully tired out afterwards.

The playgroup facilitator – Sarah – is an autism mum and has kids all over the spectrum and a few step kids on there as well. Recently she commissioned some of our local aerosol artists to paint her vehicle. Now that’s a bit of autism awareness for you!

the autism awarenessmobile, outside our beautiful little playgroup venue

the autism awarenessmobile, outside our beautiful little playgroup venue

For Your Listening Pleasure

A photo a day in April for autism acceptance:

It’s easy enough to read about some of what happens in our day to day lives. I’ve been telling you about the noisemaking my little guy likes to engage in, but it’s not the same as experiencing it. So here…for your listening pleasure, is what I listen to day in, day out. At the  moment.

I say at the moment, because I am hoping that this is a ‘phase’. I know he gets a lot of sensory input from making all this noise (me too!!), but it does sound like he’s being hung, drawn & quartered when really, he’s just sitting there enjoying himself.

I have also been telling you that along with the screaming, he has been doing some great talking. During the last few months he has clicked over from being essentially non-verbal, to being verbal. Which is like, you know…a miracle!! So here he is, just a few minutes later.

Now before you start telling me how cruel I am, in this instance I’ve used his ribbon to encourage him in his talking. There are very few things that really motivate my little boy, but his ribbon most definitely does. So I’ve extended the situation to give him more opportunity to use all this beautiful language he is developing. Why the screaming and talking are going hand in hand? I wish I knew. (any suggestions gratefully received).

And last of all, here is our photo for the day. It’s something he did at school. I like it! It’s up on his wall in his bedroom gallery – laminated!

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Pushing The Envelope

I seem to have rather a lot going on at the moment. That could possibly be the understatement of the year.

There is the regular high level of activity in a house with three little boys: school, swimming lessons, music, play dates, play doh, toilet training, day care etc. Then there is the autism ‘stuff’ – speech therapy, sensory diets, daily communication with his teacher, horse riding, managing & monitoring behaviour, anxieties & meltdowns, technology, respite services, appointments, etc.

not mine!

not mine!

Then there is the child protection layer – dealing with the bureaucracy, three different families all with their own set of needs and issues, confidentiality, attending training, attending therapy, research and reading to stay informed on various incredibly important and current issues, endless filling in of forms, home visits, pyjama angels, paperwork etc.

I’m exhausted just thinking about all of these balls I need to keep in the air. But this year has just jumped up and turned the balls into chainsaws. That makes it sound bad…it’s not bad. It’s actually pretty exciting and being a single parent…well I gotta get my kicks where I can.

juggling

What is so exciting? A couple of new projects are getting off the ground.
I’ve started a new blog. A private blog which is for foster carers in my local region. After a year of discussing the idea, getting approvals and educating people about the blogging world, creating and tweaking the draft, it’s finally gone live. So I’m pretty excited about the potential for this blog to provide some great support to local carers. I’ve got a lot of blogging to do!

I’ve also become a signed up member of the P&C at L’s special school. It’s his second year at this wonderful school for special needs kids. I’ve been absolutely thrilled with his progress since he’s been going to school. He loves going there (thank goodness), their program is dynamite and his teacher is just wonderful. She ‘gets’ him, she cares about him, she has her work cut out for her, but she is doing it…he is learning.

It looks like L will be going to this school for many years – all the way through. So, I thought I’d better get in there and be an active part of his school community.

But the biggest item on the agenda is a project I have cooked up with another wonderful autism mum. In looking to the future for our kids we know there is precious little support out there as they transition towards adulthood. So we figured that if we start something going now, by the time our kids are that age, we will have created a program that they can be a part of.

so many small things

so many small things

We’ve called it Studio Next with the tagline autism+art+life. The basic idea is to provide a program for 15-25 year olds with autism, where they are supported to use the visual arts to explore their interests & passions while developing a friendship group, social and life skills. In a very short space we have generated a lot of interest. It’s exciting to see an idea develop into a reality so quickly. Of course, there will be a blog to document the progress there as well.

blogging it

So yeah…I’m pushing the envelope.

A Difficult Woman

Every now and then something happens that pivots your life and sends you off in a slightly different direction. At the time, you could never predict just how important it might be or how far away from your original trajectory you will be taken. Looking back though, you can see just how fundamentally things changed because of that turn of events. For me, it was the accidental making of a friend.

As young 20somethings, we were a couple of outsiders who quickly recognised a fellow traveller and formed a solid friendship. We sealed it by watching Jaws 3 & 4 on the big screen in one afternoon, a spot of fishing and a night of drinking our way through the various alcoholic beverages of our teenage years. Blue Lagoon anyone?

We spent most of our friendship living in far distant cities and towns. We never got to just drop over to each others place, to wear out our welcome. We did have a lot of holidays together though, so our story is full of beaches & road trips. And we worked together making music and films.

says it all

says it all

Whenever we could, we’d squeeze in a Yum Cha with a bottle of wine. Somehow this noisy, family  environment and combination of dumplings & alcohol would get us firing. We would cook up all kinds of plans and projects, make an enormous list then go off and accidentally spend way too much money on Christmas decorations or haircuts or frivolous frippery.

post yum cha

post yum cha

Our friendship has been an incredibly sustaining force in my life. It wasn’t always easy, but getting through the tough times and having that shared history over so many years builds something very strong between you. She was a ‘difficult woman’ and so was I but we only ever had one fight and that was about art/being an artist. In the end though, she always wanted more for me than I wanted for myself and for that…I am eternally thankful.

I had always looked forward to our ‘old age’ when we could really give the eccentricities free reign and nobody would care. But life is too short.

I’m lucky enough to have some other wonderful friendships with difficult women, but there is a space where you used to be. I don’t like it, but there you go.

Still such an influence on my life, this one’s for you on International Women’s Day 2013.

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http://www.aacta.org/the-awards/byron-kennedy-award.aspx

Summer…you’re standing in it!

It’s summer! Oh boy is it summer!

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A snapshot of the weekend. (conversion for our fahrenheit friends is 45 = 113, 32 = 89). Lucky we don’t live in Birdsville!!

There’s two more weeks of school and then…holidays for 6 weeks. So I’m trying to plan, to make sure we all stay relatively sane (especially me). I’m booking L in for some vacation care, mostly as a way of easing him out of the school routine and then easing him back into it prior to school starting. So I get a week of grace in between school finishing and Christmas and a week of space before he heads back to school.

It’s a specialised vacation care for kids with special needs and best of all – they run it at L’s school. So there will be many aspects of the day will be familiar to him. I’ve only used this service for a couple of days in the middle of the year but I was impressed with their carer to child ratio, the relationships these carers were able to build with my little boy in that short time and his happiness levels in going along to this program. Fingers crossed that will continue.

I’ve got a couple of goals for the holidays. One is to get some good down time for me. The other well…

I’ve been really inspired my a UK blogger whose autistic son Alfie participates in a surfing program. Firstly, kudos for going surfing in the cold old waters off the English shores – brrrrrr! Secondly, amazing!!! Thirdly, this is a great blog so click through and have a look at this great kid who is doing amazing things.

Coincidentally, I happened to see this great poster. I was initially pulled up by the fantastic wood cut style graphic and then I saw what they were promoting…

wish we lived closer...

wish we lived closer…

Then, another blogging friend at It’s a Wunderful Life sent through this link for the Surfers Healing non-profit who provide surfing therapy for kids with autism.

Are you sensing a theme here?

Rainbow Beach....ahhh! (credit: Paul Thomas)

Rainbow Beach….ahhh! (credit: Paul Thomas)

So, I’m going to try to see if I can make some connections for our trip up to the beautiful Rainbow Beach after Christmas. Hopefully, I’ll see if my darling boy L can get his grommit on and hit the waves.

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.