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!

 

Lisa

My boy is 7 and is in his third year at school. He attends a ‘special school’.

It is indeed a special school. There’s just over 100 kids who attend there and each class has around six kids in it. I feel pretty lucky that his school is one where there are many experienced and dedicated teachers and support staff. They are very child focussed, every child is well known to the staff and most kids enjoy being there.

When L started school at the age of 5 he went into Lisa’s class. He really bonded with her during that first year and made some great progress. I felt like we’d hit the jackpot when he was once again placed into her class the following year. Continuity is such a precious thing for most kids, but especially for L. I could relax, knowing he was in good hands. She was able to draw him out and engage him and most importantly, teach him.

Third time’s a charm and Lisa is once again L’s teacher. For the third year! Winning!!

Well, yes. It was a relatively easy transition back to school, but it’s been a tough term. L’s behaviour at school has been challenging with lots of attention seeking aggression and noisemaking. We’ve been working through the issues together, fine tuning the environment, giving him sensory breaks, physical exercise and plenty of one on one time.

Today it finally clicked. For me. I had a meeting with Lisa and as we were identifying his IEP/ILP goals and talking through his behaviour management and self regulation options, Lisa told me a couple of little stories about my darling little boy.

And now I know the truth! She has STOLEN his heart!!

He often asks about her at home. ‘See Lisa today?’ which I interpreted as him checking on whether it was a school day or not. Wrong! He misses her and wants to see her. How do I know?

Well here are two of the stories Lisa shared with me today. The class were recently doing an activity on the lovely wide and shady veranda outside their classroom, Lisa needed to stay inside to work on something. L was not happy about being separated and spent the entire time standing at the window looking in at her, quietly, longingly calling her name. When she is not in the classroom, L goes to the iPad, scrolls through the photos till he finds one of her. Ahh, there she is. Everything’s OK.

I asked her if she minded being stalked.

Yeah, I know he still loves me. But he loves her too. I don’t mind. She is a wonderful person. It’s early days yet, but she might just be that one teacher who makes all the difference in his life.

Teachers

 

 

 

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

Stuck on Stuck On You

Photo a day for autism acceptance in April

We’ve been listening to a lot of Elvis on our holiday. Early Elvis, Comeback Elvis and Hawaii Elvis – we don’t care. Music is becoming increasingly important to my boy and I couldn’t be happier.

When he is engaging in his noisemaking or ‘I’m bored’ behaviours, I can ask if he’d like to listen to some music, hand him the ipad and he’s a happy boy. That in itself is just huge. It’s taken him more than 3 years to get interested in the ipad. Now, he knows where to go to find the music, he can chose his artists or albums. He has also started coming to be and asking ‘Listen to music?’ Oh how I love to hear that request. Usually, once he gets the music going he will chose to look at photos. There are a LOT of photos on the ipad. 7000+. He features in at least 3500.

‘Stuck on You’ is the current favourite. Round and round we go. Every now and then he will let the playlist go and there are a few other songs that he particularly likes, but then we are back to Stuck on You. I would have to say that it stands the test of hundreds of repeated listens within a reasonably short time period.

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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

I Am Living With Yoko Ono

Not really. But I might as well be. Seriously, she does a pretty good version of what I have going on from about 5am – 7pm day in, day out.

My darling 6yo has become a noisemaking machine and it’s doing my head in.

You can take it for an hour or so. But as the day rolls on, the volume goes up, the excitement levels escalate. The quite acceptable, gregorian chant-like droning becomes screaching. My one remaining nerve just got squawked into oblivion and … I’ve lost it, again.

It’s stimming. Noisy stimming. The ribbon is flapping and flicking. He’s jumping around like he’s on fire with those whole body Peter Garrett dance moves.

Yep – Yoko Ono + Peter Garrett = my life.

Meanwhile, I’m trying to go to my happy place where sound cannot hurt me. I’m breathing deeply, I’m staring off into the distance, transporting my tired, dehydrated, overworked brain to quieter times.

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But then I snap back to reality, and the boy is happily slurping down the dregs from that double shot espresso I made for myself this morning. Hmmm. There’s something about the smell of coffee that speaks to my sweet boy. At least he is quiet for a moment.

Well. Autism mums are nothing if not lateral thinkers, especially when feeling slightly de-railed. So my short term solution is –

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I would fill my ears with cement but then I couldn’t hear all the fabulous language he is coming out with in between all the horrendous noise. I’ve waited years to hears these words, these phrases. They are sweet little drops of heaven in between the devilish cacophonic soundtrack.

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

 

 

 

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.

We Are Their Village

A series on Foster Care

In Australia we have a very sad statistic. The number of foster carers is going down and the number of kids in care is going up. What’s wrong with that picture? In my mind, I think a lot of this has to do with the way in which we are connected (or not) to each other.

One of the most common things I hear from people when they find out that I am a foster carer is ‘Ohhh I don’t know how you do it! I could never give them back’. It’s funny isn’t it, because these same people, when they are aunties & uncles, grandparents or just friends say things like ‘the best thing about looking after these kids is that I can give them back at the end of the day’.

In reading some of the blogs written about foster caring or about families who do things like heading off to Africa or China to volunteer at orphanages, hospices and the like, I’m struck by the outpouring of emotion in the comments. It’s clear that we like to see ‘good’ being done. And yet…it’s not enough to spur most people to action.

I know very well, that foster caring is not for everyone. Most people are busy raising their own kids, they have their own challenges and may not be in a position to be able to care for others as well. Some people are just not suited for the job.

However…there are so many small things you could do and endless ways in which you can be a part of making your community reflect the kind of values you strive to grow in your family. Letting your own children see you act on this and allowing them to be a part of it will raise you up in their eyes, helping them to understand one of the most important things in life – that we are in this together.

Whatever the circumstances may be in your life, I really encourage you to think of ways in which you might be able to help those children in your community who are most vulnerable. These children are ours. We are their village.

 

Laser Beak Man, A Bridge, A Foundation

Day Two: Autism Awareness Month

Today is World Autism Awareness Day – declared by the United Nations, no less. But last night belonged to Tim Sharp.

A crowd of about 100 people gathered on a footbridge over the Brisbane River as one of our stunning autumn days turned to dusk. There were kids running around (including mine) picnic blankets with food and drink and a wonderful feeling of excitement as friends and families gathered to watch one of our landmark bridges become a canvas.

Tim Sharp has autism. He is 23 and he is an artist. He invented the character Laser Beak Man who appears in all Tim’s artworks, usually with something to say. His work is uplifting and humorous and Laser Beak Man is a very unconventional and literal superhero.

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It was an evening of firsts. It was the first time that the William Jolly Bridge had been lit up with projected artwork that had a (very worthy) cause attached to it. It was the first time Tim’s work had been projected onto a structure in this way. It was so exciting to see the images slowly emerge as the natural light faded and night became darker. The bridge looked amazing.

William Jolly Bridge - Laser Beak Man

Tim’s mother Judy and brother Sam were there. Judy spoke of the journey that brought their family to this moment. She’s an amazing woman who, without all the services and support we have today has guided both her sons (Sam has just finished competing in the Olympics swimming trials) towards their future with heart and intelligence.

Judy then took everyone by surprise when she announced the launch of the Tim Sharp Foundation. It will be a non-profit organisation which helps to connect young volunteers with autistic young people. The volunteers commit to taking them out once a week to an event or activity, that anyone their age would enjoy. It could be going to see a band, going to a movie – whatever works. What a fantastic idea! I can’t wait to see the Foundation get off the ground and I hope I can be a part of helping to make that happen.

At this point, there was another first. It was the world premier of the Laser Beak Man song. A while ago now Tim was contacted by a band based in Nashville, Tennessee. They had googled the words ‘happy colorful art’ when they were looking for artwork for their album. Laser Beak Man came up in that search and a unique friendship was born. That group is the Ghost Ballerinas and together with Tim they have  written the Laser Beak Man song. Last night the song was played publicly for the first time ever. There was a lot of crazy dance moves going on – the kids loved it!

I finally had to drag my three boys home as they were exhausted from having too much fun and it was bedtime for them. As we left, some of the kids had taken over the microphone and were taking full advantage. I could hear 5yo Jack reciting the alphabet backwards perfectly.  A great way to end the night.

Congratulations to Tim and his family. What a wonderful achievement. So much to look forward to.

Here’s some of the media coverage:

Chanel 7 news 

Channel 9 news

ABC Radio