Pokemum

Thunderstruck

2012-02-19T20:26:00.000-08:00

Last night severe thunderstorms hit Sydney and well... as a family we had a lovely night, no internet, no Television. We sat on the verandah watching the sky light up. Even though the heavens opened up all was well...

This morning the rain had gone but not for Marlon, last night he had been planning to re set all the music on his I-Pod before he went to bed. He asked me to wake him up half hour earlier to complete this task as he couldn't do it in the storm.

Marlon hid under the covers when I woke him this morning, so I went back in a little while later but still asleep no response, then again ten minutes later and again and again.

I now knew that if he didn't get up soon he would be late for school but also that he wouldn't have any time to re-set the I-pod and probably wouldn't be able to gloss over that til after school and that the whole day now would not go as planned ( as I had planned)...

I have a busy week ahead and desperately needed to get into all the paperwork piling up in my office and Monday morning was the only time for it.

I tried to stay calm, I just wish he had been able to tell me that he needed to sleep a little longer as he was tired and that he couldn't move forward until he had updated the I-Pod and that he was stressing about the new gym activity at school today. He blanked his sister and I for nearly 3 hours and I spiralled down, so frustrating when one cannot communicate, Marlon loses language when he is stressed.

He did tell me all this...eventually when he got up after 9 , spent 2 hours not the predicted 30 minutes re-setting the I-pod. Had his shower, breakfast and then calculated that when he would arrive at school he would miss the gym activity anyway and everything was not as it was supposed to be so he regretfully stayed home in the end.

Tomorrow he will be back at it... fingers crossed...

Here is an article from Kathryn Wicks at the SMH about the changes coming up in ASD Diagnosis.

It's a real worry...

http://www.smh.com.au/opinion/politics/suffer-the-children-under-new-rules-20120219-1th2b.html

Meltdown...

2011-09-19T21:41:00.000-07:00

Marlon started school last week..slowly but surely. We managed to get him in to the school we think will best serve his needs, after a process of gathering information on Marlon by chatting with me and reading reams of reports the Department of Education submitted an access request application which went before a panel of folk who decide who most needs the places available.

They suggested a plan B if we didn't get the spot we wanted for Marlon and well whilst it might have sounded like a great program it was way on the other side of town probably an hour drive in peak hour traffic or an hour on a train and bus. They said we could probably apply for transport to pick him up and whilst we were open minded about it I think it would have been really hard to get Marlon up ready and settled to go off in a taxi with strangers to a new place when he has been homeschooled for so long....

I was stressed and confused considering this option as I got the feeling that it might have been our only one until next year...should we just sit tight til a place comes up at the school we want...am I limiting his opportunities? Will he just be fine and waltz in there and......

His dad called up to tell the lady managing Marlon's case that whilst we appreciate the offer we thought it would be too stressful for us to manage and whilst we had been in the meeting they were also discussing maninstream with him and I thought that it wasn't really what we had in mind...

It is very hard to separate all the stress from our situation and the dealing I have had with many other families over the years whilst facilitating the local Austim/Asperger's support group and the frequent phone calls I have answered from parents all over Sydney and now all over the world online hearing and reading so many stories where no one was getting it right and just agree to trying out a school and crossing our fingers....not gonna happen.

Anyway, when Russell rang to say thanks but no thanks we will wait til a place comes up ( if it does) he told a slightly different story....I am a cup half full kind of girl and have had to make the most of our situation because it seemed better than what else was on offer...survival I suppose and it was good for a very long time 5 years in fact. Homeschool was great for Marlon and our family in the early days whilst his wellbeing was restored and we explored the world of learning...who was teaching who?

Then a few years ago he made the most wonderful friend from a family who were starting out on their own homeschool journey and we shared the load. Think I mentioned that the boys had a falling out a while ago so well the bottom sort of fell out of Marlon's world, Marlon no longer had somewhere to ride his bike to, no laughing with his mate during the school day and not wanting to leave the house much unless I orchestrated a plan....my life had been galloping ahead and I couldn't just stop it....also don't think it was cool any more to be just hanging out with his mum...which is great...just like a regular teenage boy....but Marlon became something of a Hikikomori ,staying in his room and got into a cycle of not wanting to go out, he would of course on occasion with me dreaming up ways to get him moving, but I felt kinda like I was leaving him behind, he no longer wanted me to teach him and so that broke down and was kind of depressing for me. There was nothing we could do to change the situation with his friend and whilst it was devastating, (I sorely missed him and his mum too!) I had to trust that in time it would heal and it is a difficult thing to get an Aspie to change their mind, Marlon was I think really sad and lost without him but he also had respect to not push him and hopefully learnt a lesson or two about friendship.

Also perhaps if they had have still been having the time of their lives we wouldn't have pushed for the school thing to happen....(one other schoolmate not sustainable when you start to become a teenager).

After hearing what the last few months had been like from Russell ( he told them that I was trying to keep my chin up and making the most of a bad situation but that we really needed some assistance for Marlon to get him out of the house and learning again). I found it hard to probably really tell it like it was as I had to make the best of what we had going on for Marlon and also it is hard sitting in meetings crying desperate when I cope well and can always see the bright side of things...I kinda felt like I had failed him somehow...

The letter came in the mail after the panel had met and.....he got a place in the school we wanted - Wow! Thanks to Dad taking the reins I think...which now makes sense, he is trying to move away from me and out into the world so it was perfect that his Dad had a big hand in that...thanks Russell!

So last week we went over for a meeting to the school and went through all the paperwork and the Principal and Assistant Principal spoke with Marlon and me and explained how it all works there.

They let him know that if he needed something different that he just needed to tell them or tell me and they would work on making him as comfortable as posssible, even in the meeting he was bothered by the bright lights, when he expressed this they jumped up and switched off the fluros and we finished the meeting in soft dim light - perfect!

They explained that many of the adolescents who go to school there have trouble for various reasons getting to school early ( up late gaming/school refusal post bullying etc.) and so we could pick a time to start and go for as long or little as was best for Marlon, I couldn't believe it no fighting for what was needed...finally.

That afternoon he fell into a deep afternoon sleep...being with new people can be really exhausting for him...

So the next day we arrived around 9 and Marlon easily went in to a class, they thought this was a good sign as some kids won't get out of the car etc. we had caught the train and walked to the school from there, train ride is about 15 minutes from our station.

I had a plan to go get my haircut while he had his first session but instead was handed a cup of tea and invited for a chat with the counsellor. Funny I am feeling good about this as I have had plenty of time to get used to the idea of the change but didn't realise how huge it really was. The counsellor is a lovely man and I felt blessed to have the chance to tell him our story. He had a younger woman with him who I think is learning the job and well not sure what she thought as I suppose not every parent arrives after making 2 films about Asperger's and has explored the subject so thoroughly. The counsellor had opened a can o worms with me and said we should make a film about it...haha yep Seeking Satoshi is it! He thought I should call it 'When the conditions are right...'

Marlon came back in the room to meet me after about and hour and a half looking very sheepish...terrified almost...oh his anxiety cuts me up. We left and when I asked him how it was he told me he was a little overwhelmed as he had too many options and was being asked 'What do you want to do? ' Which of course is very considerate, but for him too much choice. So we discussed it and he wanted me to pass that on for the next day.

A big first day as we headed back to meet up for lunch with his estranged buddy...they had been chatting on line for a few days and it was time to get together so we met up at a Sushi Train and the boys were back in swing quite quickly after the initial 'breaking the ice' which his friend had been asking his mum how to do...literally...I suggested melting was good a metaphor for dissolving conflict...perhaps better than a sledgehammer!

Day two off we went again, Marlon was up and dressed and waiting for me to go...excellent! On the way he said 'I hope you will pass on my complaints from yesterday'....so when we arrived I said Marlon asked me to let you know he doesn't want a choice today, then that started a chat about that and Marlon explained it himself, so I left him there for the morning and this time took myself off for some pampering, I do get quite a lot of time to myself but this felt different, someone else was responsible for his input...a good new feeling.

We stopped for a coffee and milkshake on the way home and I discovered the most delicious macarons...many flavours to choose from, gonna work my way through them..then Marlon cuddled up to me on the train home and played me beautiful music on his ipod. He loves to describe the emotion behind the music and the day before had asked me about piano lessons for him again. I think he will enjoy playing the piano he already feels the music so deeply and it would be a great vehicle for his emotions to play out. A few of the teachers at the school are also musicians so they might be able to help with piano or we will continue our search to find a teacher for him.

Marlon had a busy social weekend, dropped in to visit my extended family for his cousins birthday, then his bestie was going to stay over but that plan changed...next day he rode around to his friends for the first time in months and the next day they hung out again. Monday I couldn't take him in to school as I had other commitments at his sister's school and thought it was best to keep our routine.
He hung out with his mate again in the afternoon.

This morning I got up and ready and Marlon was not in a good mood I woke him up and he hid under the covers but eventually got up but resisted getting dressed and was making strange noises and seemed in a flap when I came to his room to get him moving, he ate breakfast and was on his computer but still wouldn't get dressed and well I was ready to go to arrive on at school at 9 as planned but he wasn't budging.

What to do? Keep calm and carry on...easy to say...so I tried to get him moving but no luck eventually I lost my cool because he couldn't communicate to me what was going on...oh this is one of the major frustrations of parenting a kid on the spectrum, my experience tells me to stop wait surrender be calm patient wait...but emotionally I start to spiral down really quickly, realising that as soon as I am dealing with him in this kinda mood we are probably not going to get where we are meant to be going or maybe very late and I am at the beginning of witnessing a storm and will just have to sit it out and wait til its past...but I find it hard to drop everything when I was just about to walk out the door and it worries me because I can't fix it, change it and he can't fix it or change it and it brings up all sorts of fears for the future...what happens when this happens when he is older and needs to show up for work etc.

You start to doubt whether or not he is just trying to get out of going and hope he will just snap out of it.

His dad and brother left for school and I was left at home with him hiding under the covers not telling me what was wrong, feeling like I was dealing with a 2 year old's tantrum and yet he is a teenager....so many feelings, so I waited and calmed down myself and I went and asked him to try and come and tell me what was wrong/going on in the next 5 minutes....nothing...tried again and eventually his beautiful face popped up from under the covers and he wanted a hug...then he told me that he was really tired and felt very rushed this morning and that school was scary... so we talked about it and how we could change those things for tomorrow and I explained how that happens to everyone and if his sister was feeling tired she just let me know and if she could she just rested and went to school a little late some mornings. He had trouble with the idea of going in late tho..all the same or nothing!

So I called school and said we have just had a meltdown but now we feel much better and will just do some work at home today and try again tommorow, as I was trying to explain on the phone the assistant principal said I believe that's Asperger's and it felt great that I didn't have too much explaining to do.

It has been a while since Marlon has behaved like this yet it used to be a daily occurance and then lasted for hours and while it always works out in the end and we both often end up learning alot and solve problems it is hard to accept life this way two steps forward one step back, I suppose that is the dance.

Professor Tony Attwood noticed my intuition in working with Marlon and encouraged that, I suppose that is what I am up against when I struggle with surrendering and letting his meltdown play out, my intuition says to surrender this too will pass but the opposition to that is thoughts like -
Why can't he just get on with it? He is not respecting me/my time//school etc. Wasting time mine/ his etc. I should push him to make it happen. He can do it...

But again and again over the years I keep trying to learn the lesson just wait...a meltdown is a kind of neurological storm that has to run its course so all usual ideas run out the window. Most advice for working with kids like this is to let it pass safely, don't try and talk or reason when they are in it and we have had some doozies, sometimes it looks similiar to a seizure where his eyes can roll back in his head and just ends up on the floor in the middle of whereever you are...

Actually the many hours of labour with Marlon were similiar lessons...we had a obstacle in that the anterior lip of my cervix was stuck over his forehead and with every contraction(hours and hours) I would kind of push rushing headlong into a wall of pain and then something would click and I would just travel with it and surrender and relax and then progress was made...

On reflection I felt I learnt the secret about how to be with Marlon in those hours as birth often seems an initiation into the ways of being a parent for each particular being...he eventually arrived in the water...hours later.

So homeschool again today...we did a little Japanese (he asked me how you would translate Thing One and Thing two from Dr.Seuss in light of the complex Japanese counting system then we started on A Very Hungry Caterpillar.. the mind boggles will have to ask my Sensei) and English schoolwork grammar that he did independently, then he took some vitamins and fish oil and we talked about his anxiety.

We had a good laugh and chat but he still felt tired (not surprising after the meltdown) and so has gone back to sleep now listening to classical music.

I think aside from being tired today, he confessed he stayed up late helping a friend online...he is also adjusting to this enormous change and aside from starting school he has just reconnected with his friend and both are so wonderful but that is a lot of socializing for a boy with Asperger's....so day by day....we will try again tomorrow...earlier to bed, up earlier in the morning so he doesn't feel rushed...fingers crossed!

P.S. Didn't get to finish this earlier as had another drama with his sister...something in the air?

Anyway, Marlon totally stepped up to help me out although I didn't end up needing him too, he offered to pick up his little brother and run him round on his afternoons activities, so mature in some ways...I suppose this is also just being a teenager...between the worlds.

Unschooling Untitled: Pokemon and Multiplication

2011-09-04T23:58:00.000-07:00

Unschooling Untitled: Pokemon and Multiplication

Unremarkable!

2011-09-01T18:46:00.000-07:00

A month has passed since my last post...today DET are meeting to try and find a school placement for Marlon.
We have sent specialist reports to their office and completed an access request application. I find it hard to cram in 5 years of homeschooling into a few pages...when asked how has homeschooling been in a meeting last week Marlon replied 'Unremarkable'!
So I am still reeling trying to hold my head up after that comment, although when I joked with him about it later that day he told me that he wasn't qualified to give a comment on the question and hoped he wasn't misunderstood.
Misunderstood...I have been speaking to various people with Asperger's this week and coaching them through rounds of being misunderstood and trying to get them to not misunderstand others. Have been thinking I should start a coaching business for them...
Teamwork, collaboration hard for most but extremely difficult at times for those with AS. All the social softeners that oil the wheels of relating, seem to be left out of the picture for those on the spectrum. But then the deep communication that others miss seems to cut right through to one's core.
Sometimes Marlon will reach out and touch my face like a baby feeling around tenderly trying to soothe my worries.
Not sure what the outcome of the meeting will be today..there are a few options..the school that we would like or a temporary placement where they do art and music therapy programs whilst we wait for the one we want. Gotta try it all out I suppose...
Deep feelings keep rising up in me, trying to sort them out...decisions from when he was a baby, even from his birth keep flashing before my eyes. I suppose 13 is a kind of ending in a way...and we are floating in some kind of limbo whilst we wait for the new ship...
As the woman who is handling his case said to me yesterday 'We don't have a crystal ball' I am being tested about being in the moment and Marlon says he isn't thinking about it at all...
He has been trying to teach me this since before he arrived... surrender...perhaps he is a not so little Buddha in our midsts.

Wisdom by the wayside...

2011-08-01T19:20:00.000-07:00

A few days ago I got a rotten wisdom tooth removed as it was causing me terrible nerve pain...well now that pain has gone but another has replaced it...it will do doubt pass in time.

It was of course a practical matter, the tooth got a hole and then also chipped which caused the pain but I often look for the poetic and mythical in these kinds of events.

When you see the finished film of Seeking Satoshi, you will view me catching a taxi home from Kyoto hospital, Russell captured me on night vision cam ( so I sort of look like a wild animal) after being rushed there in an Ambulance the night before.

The logical explanation for my illness (violently purging the contents of my stomach) was that I had caught a bug. Probably the bug came from either the 'Pond Creatures' on the menu at little restaurant in Pontocho and /or when I rinsed my lips with dirty water.

I had sticky hands after eating a red bean ice cream cone for dessert and and ducked down a laneway to a shrine and as I rinsed my fingers in the shrine water, I also rinsed my lips (I had picked up the habit in Nikko where the water was clear and fresh and fine for drinking.)

But in the taxi I feel that what had actually also happened was that I was trying to 'digest' the trip, new places, culture, food, leaving my other kids back home and wondering if I should be filming Marlon and why...

It was the middle of our trip and I had felt a quite low the previous afternoon..culture shock? I was really enjoying travelling with just Russell and Marlon but it was so focused on Marlon's Asperger's that it brought up a lot of feelings I suppose.

All the things that you do as a 'carer' when someone needs extra support to navigate their way in the world, it becomes a natural part of every day and part of your identity.

I must admit that the last few weeks I have been confronting the idea of Marlon rejoining public education and I have to trust that he is ready to navigate that himself...I am excited for him and am aware that I will have to find my feet again...

So I have been thinking that perhaps the extraction of my tooth is like the old wisdom leaving and it will leave a space....

It also reminds me of the Tarot card the Hermit...who is wise and knowledgeable but if one gets stuck in that role then they don't dive into new life like the card after it ' The Wheel of Fortune' ...

Marlon turns 13 next week and my youngest son turns 7...so new chapters the first seven years done for Logan and officially diving into adolescence...

I have much else to fill my time with..I have just started a crowdfunding campaign to raise funds to finish editing etc. our other doco...it is about wild things...the capture and removal of Brumbies from the beautiful Burragorang Valley in the Blue Mountains Wilderness a few hours outside of Sydney...
click on the link below and watch trailers...if you donate you will receive unique perks! Share it round..thanks xx

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Back to school?

2011-07-19T18:46:00.000-07:00

Yesterday most kids, in N.S.W (including two of mine) went back to school and all is quiet in the house...well sort of..Marlon is here and he has recently asked if he can also go 'back to school' he is in Year 7 this year and has been happily homeschooling now for almost 6 years.

Homeschooling has worked really well for him, a quiet usually calm environment to get on with his studies and creative pursuits without the bother and confusion of the hallowed halls and loads of kids and of course access to his own computer.

When we started most of his lessons were based on Pokemon, Neopets whatever he was interested in at the time. Digimon was a theme for a while too.

We had a dream run the last few years particularly as he found a friend who he could learn with. All of a sudden Marlon was at his house almost as often as he was home, eagerly riding his bike over to visit and very excited to be introduced to a new special interest - World Wide Wrestling. Marlon and his friend laughed together, discussed the ways of the world, rumbled like wrestlers on the trampoline and often went out to eat Sushi.

We helped them make a film for Japanese studies 'I Heart Japan' which won best cinematic work in Japan Foundation Video Matsuri. It was a great project that covered lots of Key Learning Areas, creative while still ticking the boxes.

His friend's mum and I took them to the bowling alley fortnightly for 'Sport' and they hung out all afternoon after that.

Life is great when you have a buddy!

They have recently had a falling out which I so hope time will heal, very difficult to repair relationships Aspy to Aspy when things go wrong.

Marlon has a few good friends in the physical world and quite a few international in the virtual world..(virtual penpals ). His best friend since he was 6 goes to the local High School, well his local not ours, we miss out on it being our local by a block and a bridge. Marlon would probably like to join him there if it was possible.

I had been gathering textbooks and other materials for study ready for home school high school which we started to use this year but now Marlon wants his teaching to come from outside, which I suppose means I have done a good job in preparing him to face the world...

We visited a small school which takes other kids with Asperger's and who have other emotional difficulties before the holidays, it was the first time I could see the possibility of Marlon attending somewhere, although he has been coming with me when I teach at his sister's Montessori High School and holding his own amongst peers. He says he doesn't want to go to the Montessori School 'too much freedom' hmm not sure what he thinks school will look like for him - Hogwarts perhaps? He also says he doesn't 'want to go' but feels he needs to in order to cope with the world as he grows up. I believe he is influenced from his online friends, many who like him have anxiety troubles etc. and I think he is really brave and showing maturity by accepting that he may have to compromise to get ahead...

So, I spoke at length with the Principal yesterday and have made the next phone call to put in an application, Marlon took on board my advice for thinking this could be a good option for him, as he has asked to go to a 'normal' school with no assistance but I feel that he is so far out of the box being homeschooled for so long that we need some transition support in place for him to succeed.

Funny we went to see the last Harry Potter film last week with one of his friends who starred in our first film, 'Courage is a Telescope'. Like others I was saddened by the end of an era for Harry. Marlon, like Harry, has grown up right before our eyes.

I remember when he was in preschool he was 'Harry' 24/7 he spoke in Latin Spells all day, I had to be McGonagal or Snape. He waved his wand and wore a robe, rode a broomstick, they loved it at NIDA where I sometimes teach, the actors approved of his method acting (later when he went through a Sonic the Hedgehog phase and was dressed as Sonic for Mufti day his teacher asked him to remove his tail as it was an OHS risk and he piped up and said 'but I am a Hedgehog' and was mortified at the thought of removing his tail).

We didn't think anything unusual about his obsession ( before his AS diagnosis) it made sense in our family and was lots of fun to not be a muggle. The day he went for primary school orientation he was of course dressed as Harry ( I was a little worried about him changing his robes for a school uniform- he even felt around for the plastic glasses on waking every morning) and he somehow managed to get the attention of the whole primary school - I felt like we were at Hogwart's! All the kids were yelling out 'HI HARRY, HARRY POTTER' as we passed and we got mobbed - he loved it! He was at that school almost 2 years then the wheels fell off and has been home since...

I now understand the links between his love of Potter and Pokemon, both explore supernatural creatures, a pokedex is a type of bestiaries ..fascinating...

I have very mixed emotions about sending him back to mainstream education, he has come a long way but hard to know what is just natural, maturing, and the effects of not being bullied, and sharing a very close relationship with me with time for questions, time to calm down, time to make sense of all the myriad things that make someone with Asperger's confused and curious...it has been a way to cope in our family too. It is rather noisy and busy when we are all home, so having quiet days for Marlon has helped keep the balance for us all.

Marlon turns 13 in a few weeks so perhaps he is ready for initiation into the wide world and journeying to be a man...when asked what he wanted to be when he grew up on a Kindergarten survey he said 'a man'...now it's time to begin...

Shriek

2011-07-13T23:28:00.000-07:00

Thought I'd give you an extra post as I missed one at the start of the school holidays and something just came up that I thought I'd share.

Marlon has been making an ear-splitting shrieking noise on and off for the last five minutes...thankfully for him and me I think it has stopped now. The noise he was making has been going right through me and obviously disturbing him although perhaps making the noise releases the pressure for him...I don't really know.

I tried to help him but he didn't want or need me to help, which is very difficult when he is obviously so distressed...what on earth was happening to him you may wonder to make the noise?
I suspect something wasn't going right for him in the game he is playing...a Mario Wii game.

I wanted to talk about this as even though most of the time things in our house run much smoother than they used to, there are still times like these when his emotional state , (then subsequently mine) can take some time to recover from.

His Dad has just walked in and is asking him why he is making funny noises, luckily this time it didn't make it worse...but my nerves are on edge, hoping that it will be a little while longer before his little brother runs back inside and cops the wrath of Marlon's angst and the fallout from that.

Anyway, people always wonder how we cope and I thought that knowing about these moments in our day might help to understand a little of what might be going on behind the scenes.

When a toddler has a 'meltdown' or makes bizarre noises it is often easily accepted/forgiven but when same thing happens with a 12 year old it is hard to explain and cope with.

I once read that apparently families who have a member with an ASD have higher stress than with any other kind of disability, which can lead to all sorts of issues. Luckily there is lotsa love in our home but some days are still rather difficult...he has stopped making the noise for now but I can still feel it and hope he feels better...

P.S. He has gone to the safety of his room now - Professor Tony Attwood says that the cure for Asperger's Syndrome is a bedroom with a computer...eg: BEN X FILM
I am recovering too can feel my heart aching...breathing and writing helps...

Holidaze...

2011-07-08T04:30:00.000-07:00

School holidays usually herald the beginning of a stress free (maybe) breaking of routine and not making packed lunches in the morning. Having someone with Asperger's in the house can make holidays a difficult time. Marlon is pretty cool about holidays now, but a few years ago we left for our journeys to holiday places with him screaming in the back of the car to 'turn around and go home now' and when we didn't he would count down the hours til our return. I had to have a schedule written out for the duration of the break and we couldn't miss the scheduled 10 am milkshake at said cafe or the whole day would be doomed.

A couple of years ago we took the family for their first 'overseas' trip to Tasmania and Marlon actually loved the flight - of course..there was a place for a cup on the food tray, he could order pringles and hot chocolate, everyone had to stay in their seat and not disturb each other - air travel was for him! Once in the hire car he handed me back the handwritten schedule I made for the first day of the trip- ' I don't need that Mum' and settled into the fun of exploring the world - phew!

Now he is equipped like everyone else with various electronic gadgets and he can tweet from my phone listen to his I-pod and play his DS, no one notices that he is sometimes using these things to help cope with the stress of transitions he justs looks like a typical teenager.
In fact things have sort of gotten easier for Marlon as he has gotten a little older..folk are used to sullen teenagers who are lost in their own world and don't disturb him too much, but when he was 6 or 7 a lot of adults expected him to engage with them (seemingly for their own sake) and men in particular would ruffle his hair when they didn't get a robust greeting from him- this sent him running as it would send the wrong message through his nervous system and actually be kind of painful- a sensory assault.
Not a good start to a party etc.

Marlon loved travelling in Japan and he had both parents there just for him. He loved how the trains ran on time, the streets were clean and safe. He could independently get a grape fanta from the vending machines without having to order from a human and... Pokemon are everywhere! He even showed us around Shibuya as he had played a videogame set there called 'The World Ends with you'- 'there's the 109 building, so Hachiko must be this way!

We went into a 100 yen shop and he asked for a 'cup and ball' old fashioned wooden toy- he also knew this from a game...we visited many sites that had Pokemon connections the Kinkakuji Temple, Kyoto 'Ho-oh's temple. Violet city- (Nara) We found these via bulbapedia's map depicting Japan in Pokemon terms with references to many places. So much was familiar to him from gameplay...When we returned to Australia (in lush tropical Cairns for a brief stopover) he stopped in the street and said it's all dirty and messy and chaotic etc...I said 'Welcome Home Marlon'!

I think once you can support the experience of a holiday , breaking routine for someone with Asperger's with 'scaffolds' of schedules etc. it can become a new routine in itself and it has actually helped the whole family to have enhanced travel experiences, as I plan ahead so much more.

Happy Holidays to all...

Love vibe

2011-06-23T21:20:00.000-07:00

Last night we screened 'Rainman goes to RocKwiz' at an Autism Fundraiser that my brother-in-law's band 'The Church' put on at the Red Rattler Theatre in Sydney, the event was called 'Universe Within'. It was well attended and made some money for ASPECT, Autism Spectrum Association.
It was a great line up of musicians, my partner even got up and sang some of his old songs, he hasn't performed for a while - too busy making films and teaching others how to.
What I enjoyed most about the evening was being with others who knew about Autism from there personal experiences particularly those who have someone in their family with an ASD. There is a great sense of relief meeting others who have been in the trenches and enjoyed the wonderful quirks and triumphs of living amongst those not neurotypical.
It was also wonderful to watch the film with an audience again, I have seen it so many times now, but when I sneek a glance around the room and realise it is the first time for others, all the reasons we made it come to light again and spur us on. I spoke briefly to the audience about 'Seeking Satoshi' and got an excited response when I mentioned that Satoshi, Pokemon creator has Asperger's.
There is a manga series on Autism called 'With the Light-Raising an Autistic Child' by the late Keiko Tobe, again when I first read this it articulated the emotional journey you can go on when first discovering that your child operates differently to most.
I hope that by making this new film we can send out ripples of acceptance about those with Asperger's/Autism and even flip our tolerance into great curiosity, then who knows what the world may look like...

Matsuri Time...

2011-06-17T00:52:00.000-07:00

Spent the last two days watching other people's documentaries at the Sydney Film Festival. Thoroughly enjoyed both of them, took Marlon to yesterday's film, 'Jiro Dreams of Sushi' and went by myself today to 'My Reincarnation' and afterwards discussed film with the filmmaker Jennifer Fox, she took over 20 years to make My Reincarnation. So now I'm feeling ok with taking time to make 'Seeking Satoshi'... some things just grow their own way.

When we set the goal to meet Satoshi Tajiri our thinking was that by meeting him we would maybe get an insight into how his, Marlon's and other Aspy minds operated...but I had a strange feeling that we were about to undergo some kind of initiation. Felt like we would need to 'do our homework' learn about Japan and what makes him tick etc. I didn't know what kind of ride we were in for or that I would fall in love with many things Japanese and explore the terrain of the Japanese imagination.

I read a fantastic book called 'Millenial Monsters' Japanese Toys and the Global Imagination by Anne Allison another called "Pikachu's Global Adventure' Edited by Joseph Tobin and revisited a book called 'Killing Monsters' Why children need fantasy, Super Heroes and Make Believe Violence. I picked up the latter at a market stall a few years back when trying to justify why the weapons (plastic) of mass destruction were hiding at our house. One of Marlon's interests had been various types of weapons and he got to test the real thing at Ninja School, Edo Wonderland in Nikko, Japan.

Marlon was totally at ease in the "Ninja School' tho he was the only western kid there. The staff dressed him up as a Ninja and he got to throw Shuriken and went through all the motions of Ninja bootcamp. It seemed as tho he had been waiting for this and was very attentive to the Ninja Sensei. His Dad and I were amazed, at home he couldn't handle a regular classroom but here he was ready to learn - all the cool stuff I suppose and I think having the language barrier actually helped. Marlon used to ask me if I could lose one of my senses what would it be? He said he would be happy not to talk, he could just write me notes, so he also enjoyed just being 'shown' rather than 'told' what to do by head Ninja. I suppose this translates as 'limit audio instructions' in a classroom setting. This had happened a few years back at a home school event where there was a guy showing us medieval weaponry, Marlon was overwhelmed by the noise of the big crowd of kids but when we went up after to look at all the weapons quietly, Marlon helped the guy load all the gear into his van, even the chain mail which was quite heavy - he had a grin from ear to ear and said he could do it all day long- he was ready to be an apprentice.

I love when Marlon finds an activity that incorporates the ideas from his Occupational Therapist to help his sensory integration. 'Heavy Lifting' is on his list of daily things to do to help his Proprioception System (http://www.parentsrteacherstoo.com/SensoryMotor2.html) so we find ways like him helping me carry the washing basket, unloading the groceries and carting chain mail - think he liked the chain mail best!

The joy I feel when Marlon finds his 'right livelihood' and can participate fully in an activity is imeasureable( it seems his 'Asperger's disappears' although I suppose that's not true as the activity he is led to in the first place is precisely because he has unique focused interests eg Asperger's). Although these times are few and far between, it seems like all the ingredients have to be just right for this to happen and my job has been trying to work out the recipes! I hope I can help steer him in the right direction for him to select the menu himself and over the last year he has been achieving this more and more. Professor Tony Attwood said that I would be past my useby date soon and that the impetus to participate would have to come from Marlon, perhaps with a gentle nudge from me.

Anyway, this weekend our last film 'Rainman goes to RocKwiz' is screening at NXNE, Toronto and picking up 'Best Emerging Artist' Award at Superfest Disability Film Festival, California. Here is the trailer to look at you can also download it in full for a fee from Sproutflix. Enjoy.

Rainman goes To RocKwiz Trailer Subtitled from russellkilbey on Vimeo.

Writer's Block

2011-06-09T18:42:00.000-07:00

Well, here goes...My husband suggested I write a blog to generate interest in our new documentary that is in production. It is called 'Seeking Satoshi' and so far maps the journey of our son Marlon, who has Asperger's Syndrome through his pre-teen years and his special interest in gaming/Japanese culture. If Marlon reads this he will correct me and say he doesn't like things just because they are Japanese he likes them for other reasons, although predominantly the cultural things he likes are Japanese Video Games and music ( usually soundtracks from Japanese Video Games).
Oh it's called 'Seeking Satoshi' because when we made our first documentary film a few years ago 'Courage is a Telescope' we noticed that quite a few boys involved in that film (all who had Asperger's) were into Pokemon and then we discovered that 'Satoshi Tajiri' creator of Pokemon is also said to have Asperger's. Marlon was singularly obsessed with Pokemon when he was about 7 years old (he is now 12) and he started home school after unsuccessful attempts to get him support at local public school. Our first home school lessons used Pokemon as a springboard for learning for instance I found a flyer for a fundraiser 'Host your own Pancake Day' you can't eat Pokemon( although we found Pokemon branded food in Tokyo) but Marlon also loved Pancakes. So we planned a 'Pancake Day' to raise money for charity. This was a useful activity incorporating Maths(ordering the pancake making ingredients/charging for pancakes etc.) Art (we painted Pokemon Carnivale Masks) and a great social event, Marlon even set up his own home school fundraising jar 50cents to enter donut eating competition. We learnt about other cultures and festivals, Mardi Gras, Carnivale, Lent and helped the homeless of Sydney at the same time. It was a promising beginning to a home school lifestyle. His siblings still attend local schools.
The Pancake Day experience fuelled our quest in connecting with our son by trying to understand his playscape and 'step into his world' as recommended by the Asperger experts. We were so grateful to have the Pokemon portal to help us, and were curious as to what it meant to him..so many statistics..so many Pokemon.
He is still an avid Pokemon fan and this has been his introduction to much other Japanese Gaming Culture. This eventually took us on a trip to Japan in 2009 to seek 'Satoshi'. We had a map of Japan overlaid with a map of Pokemon sites from Bulbapedia website and discovered that Japan has the highest incidence of Autism in the world. Curious. We visited a group of children in Nagoya at the Japanese Asperger Society and where Marlon made friends despite the language barrier-they all spoke gamespeak ' Do you like Mario? Kirby?...and my favourite Pokemon is..' Despite contact with GameFreak Inc. of which Satoshi is CEO, we haven't yet met the Pokemon Master himself but setting that as our goal has led us on the most fascinating journey of discovering so much about Japan and the Japanese Imagination and most importantly about Marlon.
As Marlon has matured he has become a 'Digital Native' self directing much of his own learning and often teaching me in the process.- I am now studying Japanese and relaying this to Marlon. Don't worry, he occasionally gets out of his bedroom and onto his bike to visit his friends in person. He is blessed to have another friend with Asperger's up the road who also homeschools and last week we have had another boy join us- perhaps they are starting their own education revolution?
Stay tuned to learn more about the film as it unfolds. Oh here is a little film we helped Marlon and his friend Jake make for a homeschool project- they won 'Best Cinematic Film' at the Japan Foundations Video Matsuri Competition 2010.

I Heart Japan from russellkilbey on Vimeo.

You can also check out our website www.empressartsfilm.com