Autism, an Interview.

Earlier this year I befriended a young man in Australia named Scott. He got in touch with us through Running for Pearl as he was keen to see what we are all about. Since then he has become a friend and a source of great pride to me, even though we have never met face to face. Scott is Autistic and instead of me rambling on as usual I decided it was time someone from the Spectrum had their say. So I sent him a bunch of questions and below is what he sent back. I hope you enjoy reading it as much as I did, putting it together was definitely one of the greatest moments I have had on this blog to date. Take it away Scotty.

(Scott Woolfe)

Me: Scott, tell me a little bit about yourself mate!

Scott: My name is Scott Woolfe and I live in a little town called Alstonville in northern New South Wales, Australia. I still live at home with my family and I have been working on and off as a pastry chef for the past few years. Some of my hobbies and interests are juggling, I can juggle four balls, four rings and am currently working on other forms of juggling too. I have also taught myself circus skills in broad areas of talent. Teaching myself to unicycle.

(rolla bolla)

(clown work)

When did you realise that you were different from normal kids?

It's not that I started to realise I was different from all the other kids, I knew I was different from everyone else and didn't know why. Not really having friends at school and spending time alone was a bit hard yes, but its a good thing. I have been in relationships over the past five years, having problems here, there and everywhere. I have learned to go at everything myself and not rely on anybody.
I have had some personal problems with people over the last few years. Not having friends I find is good as I am back in my comfort zone with my own company. I can watch DVDs, I can do the things I WANT and don't have to listen to anyone else.

How was school for you growing up?

I am a lot smarter now than I was back in primary school. I have learned things where people say "How did you that, where did you learn that..." and shocked a few people in the meantime.
At school I had a teacher who was basically telling me he would do half my work to make it easier for me. But I have been a pastry chef baker and I have taught about 400 kids how to make scones, I have taught 120 students how to bake bread. So to that teacher I say "I DID IT, I CAN BAKE AND I CAN SHOW YOU UP".
People "diss" Autistic people. But we can do things that "normal" people can't. When someone asks why you are trying to do certain thing, thinking whether it's a good or bad idea, this is what they need to think of first..... "This person has thought about this idea and if they want to try it out, let them, you need to support them even if you think its not a good idea" If they think its a bad and try to stop me I feel like they are 150% against me.
So support people with disabilities and show them that their dreams can be realised and that you are behind them all the way.

You have done some pretty amazing things in your life, tell me about some of these achievements.

I am a keen walker and have walked for 24 hours non-stop on two occasions, which is about85 km's.

I have also walked 18 hours non-stop four times.

I participate in the relay for life run by the Cancer Council. I have participated in Ballina and Lismore for the past five years and completed twelve relays and aim to do twenty more, I don't want to miss one.

I have run with the Queens batton relay for the Commonwealth Games in Lismore, 2006.

(Commonwealth Relay 2006)

What are the biggest obstacles facing people with Autism today?

No support, there is NOT enough support out there for people with Autism. When support does come maybe people with Autism can lead better lives.

Who, or what inspires you?

Jack Bauer from 24
Sgt. Major Jonas "Snake Doc" Blane from the Unit
Dr Karl Kruszelnicki

Jack Bauer is a man who works non stop tracking down threats and problems. He holds up the law and sorts things out. Being Jack Bauer means you can push your barriers and complete jobs and feel safe.

Autism is a battle, like Jonas Blane going to fight as a Sgt. Major in "The Unit". I believe most families are like "The Unit". They do all the things possible and impossible for their son or daughter, wife or husband who has Autism and fight on and on. These are the true people who live in "The Unit" and if we can bond with other "Units" we can be strong and defeat Autism. As the Snake Doc would say "How about that!"

Dr Karl is a medical scientist and one of the big guns, having a wealth of knowledge he shares it with the Australian community.


Where do you see yourself in 10-15 years time?

I am hoping to complete twenty relays without missing one
I am hoping to walk eighteen hours again at my 20th relay
I am hoping to be Jack Bauer
I am hoping to be Dr Karl
But most of all I am hoping to be ME.

What do you say to the parents of children with Autism?

Let your kids take hold of things they love, let your kids be who they want to be, not what everyone else expects them to be.

There you have it friends, I must add that there was little or no editing to be done by me. Scott sent me the photos and the layout is pretty much the way I got it. If anyone would like to get in touch with Scott he has asked me to add his e-mail address. It's scottwoolfe@gmail.com and feel free to mail him or add him up on facebook. I find Scott to be a really positive example of what you can achieve with your life, Autistic or not. Thanks Scott.

See you round the bend.

Mally.

Ultra-Tennis anyone?

In the spirit of this blog and what it embodies, endurance and perseverance, I would be remiss not to write about the most epic game of tennis ever played, and it ain't over yet. It is now 22.15 Paris time and after 10 hours of playing at Wimbledon two players must come back tomorrow to finish what they started yesterday.

John Isner and Nicholas Mahut's game stands at two sets each and will see them pick up their rackets for a third day after darkness fell on Wimbledon at 21.15 and stopped a set that, after four and a half hours and 59 games each (118 games in a single set), has seen pundits search for the hyperbole to describe this unseen tour de force. They have broken records by the handful, from the longest game and the longest set to the most aces in a match and on and on the statistics go. The thing that is the most striking is the level they both continue to play at. The quick interview with both of them looking wobbly and tired afterwards showed true respect towards each other on what has become bigger than simply just a game of tennis. This is what sport and life needs, people who will go beyond what they think is possible. Just when they get knocked down or lose a point they come back fighting, holding on when it feels like all grasp is lost. I hope tomorrow they will see the end of the battle and in this fight they are both winners.

And, whilst on the subject of epic sports this weekend sees the holy grail of ultra marathons take place in California. The Western States 100 starts at 5.00 am on Saturday 26th at Squaw Valley and finishes 1oo miles later in Auburn. This is by far the most prestigious race in the endurance world and is often referred to as the Boston Marathon of ultras. You may recall my blog on Scott Jurek last May who's domination of the race is the stuff of legend. Scott is not running this year but with the likes of Anton Krupicka, Kilian Jornet and defending champ Hal Koerner in the mix it should make for an incredible race. The ladies event is also set to be hotly contested with Nikki Kimball and Devon Crosby-Helms (who's pacer incidentally is Krissy Moehl, last years runner up) leading the charge. I know I will be following the live blog here for sure.

In my injured world, yep, Achilles still refusing to let me loose on the trails, I have resorted to biking through the forest with the kids to keep my legs active. It's a lot less strain on my tendons and between the weight of Pearl on the baby seat (jeez she's getting heavy now) and having to push Dylan up the hills I feel that it helps both body and soul at the same time. I have added some photos from today's 15km jaunt and it was just sublime, fresh air, sunshine and the laughter of your kids is all the tonic a person could need. By Sunday I should be back on the road for a little 45 minute run to gauge how I am recovering, so fingers crossed. Best of luck to all at the Western States this weekend and all other runners in whatever event you may be participating in. Whether its a run alone or with friends, enjoy and be grateful for the ability to be able to do so. That's all folks.

See you round the bend.

Mally.

(ready for the Tour de France)

(the local trail)

(stopping for a drink)

(improv promo work)

(running for herself)

(summer time and the livin' is easy)

(Dylan on the descent)

(yellow bike, just needs a yellow jersey)

50km de Paris

This event was billed as the Sri Chinmoy Self Transcendence 50 and 100km races. I had spotted it in February in a running bible that was lying around the house and had decided that it would be the perfect follow up to the 1o0km de Vendee as it fell exactly 4 weeks after. I hadn't banked on the fact that the weeks building up to it would be hampered by injury, exhaustion and a lack of motivation that completely took me by surprise.

It is true in all walks of life that after the build up (and completion) of an event there follows the inevitable low. The days of restlessness after long, intense periods of activity are hard to grasp. After the 100km I found myself inactive on the running front and hyper busy on the Autism front. My equilibrium tilted. The yang to my yin put on the back burner if you will. Add to that my Achilles tendon niggles and you end up with a few doubts regarding the next race. But don't get me wrong, its not all doom and gloom, the lack of running did allow me some time to tie up other odds and ends that needed seeing to. I attended an Autism communication course in Normandy for a day and found out some new and interesting approaches to aid Pearl. Alicia and I had a long and overdue meeting with the Mayor to discuss his commitment to helping our plight and the fact that we have done our area a lot of good through positive stories in the French media did not go unnoticed. Apparently he follows the blogs and site so its a good start. Add into the mix the changes in Pearls therapy sessions and the potty training, well, our hands have been quite full.

So in order to fully prepare myself of the 50k I did the obvious pre-race resting by going to see Muse in Stade de France the night before. The gig was epic but after a few hours sleep I was gobbling down a bowl of pasta for breakfast and thinking to myself "Am I gonna finish this today?" I had my doubts. After an hour plus on the train and a mile walk to the centre of Bois (Woods) de Vincennes, I found the place a hive of activity. The 100km event had started at 7am and runners laps were being called out to them as they passed, this was 11am and the mercury was already rising. The course was a 1.6km loop and the main hub was a triangular shaped grass covered area with tables lined up at the start/finish line. There were officials and time keepers milling around and both races would be on the same loop for the day. An aid station was being kept busy with runners picking up much needed refreshment and the heat was clearly taking its toll, I could hear one guy saying he was done after 28 laps, the ramaining 34 too much to contemplate. So after taking in my surroundings and getting my race number I chatted away the remaining time and with the other runners and at mid-day we were off. 31 laps ahead of us.

The tempo was pretty high from the start and after 7-8 laps the pack had completely split with two guys in the lead and about ten others, including myself, about 15 seconds behind. I was pretty concerned about the pace as I didn't want my Achilles tendon to flare up too early and have to abandon altogether. As some of the others pushed to the front and upped the pace even more it was decision time for me, do I stay with them and risk burning out half way through or run my own race and risk not catching them later? I decided that patience was going to have to be the order of the day and as the group splintered I found myself with five others. Somewhere around the half way point I was trying to work out in my head how many guys were in front of our group, but by this stage it was 30 degrees and all I wanted to do was jump into the stream we passed by every 6-7 minutes. At about thirty km I could feel the struggle begin, my mind veered off its task and even though my legs were in a nice smooth rhythm I was becoming more and more distracted. The voices in my head were telling me to ease up, to not worry about where I finished as I had done enough already. These kind of mind games always seem to start about two thirds of the way in for me and I have to re-group and realise that I signed up for this and to stop bitching and just get the job done. Passing the tables the team called out "eight laps left Malcolm". After hearing those four words I was suddenly shaken out of the trance I was in and made one final pit stop to refuel, grabbing a handful of cooked potatoes and dousing them in salt I washed them down with a large isotonic drink and legged it. Suddenly the group got smaller and I pushed as hard as I could, after five laps I found myself alone and passing a few that had been in the pack earlier on. Some of them were walking up the hill towards the finish and sponging themselves with cold water. The next thing I know my time keeper Dave, a really cool English guy, is ringing the bell for my last lap. I cant believe it, I am 1.6km from the end. Talk about a red rag to a bull, I must have completed that last lap in my fastest time because before I knew it I was hammering up the final stretch under banner.

(the run up to the finish line)

Dave came over to me and checked if I needed any water and told me it was indeed my fastest lap of the day. I was pretty chuffed with the race as my legs felt alright and I spent the next ten minutes just stretching and walking around, very tempted to jump in the stream. I had a chat to some of the guys who had been with me earlier and four of them had abandoned, two of them regretting pushing it too hard too early. I was glad I had stuck to my own plan in the end.
The presentations were made to the 1ookm winners and the first seven across the line were called up to receive their certificates and say a few words. Then for the 50km the organiser was glad to announce that the winner, Juilen, had broken the race record in a time of 3h 43' 39'. When the presenter announced "In seventh place Malcolm Mc, Mc, Mc (not able to pronounce my surname)....." I was very surprised. I had finished much higher than I had expected. My time was 4:42:47 and after a quick photo and hand shake it was all over for the day. I hung around for a while to cheer on some of the other heroes still on the course. I must say thanks to the Sri Chinmoy team who put on a tremendous day, lots of encouragement, food and drinks and an ambiance like no other race I have been to. It may not have been a race full of elite marathoners but everyone left feeling like a champion and that's the point in my opinion, that everyone should be equally appreciated and commended for giving it their best shot.

(my"Diplome")

I am now taking two weeks out from running and have a few smaller races in the upcoming months, I am however plotting my next major event for Oct/Nov and it will be my biggest undertaking so far, you have my word. I have only posted one photo above as I forgot my camera on the day but will publish some on facebook once they are available from the organisers website. You can see the results here by scrolling down the page halfway.

That's it friends, see you round the bend.

Mally.

(Very special thanks to my Mum Florrie and sis Alison who were the subject of last weeks blog, they raised 600 euros for Autism throught their 10k run. Alison now has her sights set on the Marathon)

Thank You.

My mum Florrie and sister Alison, two of the most important women in my life doing their bit for Pearl. Far more impressive than my 100km race if you ask me. With family like this how can one fail. They completed the Womens Mini-Marathon on June 7th in aid of Pearl and Autism. Inspiring.

Mally.

The Present

There are times in my life when the I feel like my battery is completely depleted and the fight within me is withering. So when I came across his little story I just had to add it. I have been really questioning everything the past few days and I don't always find the answers, I guess that's the point of life really. All I can do is strive to be a better version of myself each day. To be a better father and husband than I was yesterday, to run harder than I did the week before. The world and our role in it can sometimes be so overwhelming, the fragility and beauty almost heart stopping at times. I am truly grateful for my family and my friends, for my health and for everyday of sobriety that passes. So please read on and take and few minutes to think of all the great things in your life.

See you round the bend.

Mally

A blind boy sat on the steps of a building with a hat by his feet. He held up a sign which said: "I am blind, please help." There were only a few coins in the hat.
A man was walking by. He took a few coins from his pocket and dropped them into the hat. He then took the sign, turned it around, and wrote some words. He put the sign back so that everyone who walked by would see the new words.
Soon the hat began to fill up. A lot more people were giving money to the blind boy. That afternoon the man who had changed the sign came to see how things were. The boy recognized his footsteps and asked, "Were you the one who changed my sign this morning? What did you write?"

The man said, "I only wrote the truth. I said what you said but in a different way."
I wrote: "Today is a beautiful day but I cannot see it."

Both signs told people that the boy was blind. But the first sign simply said the boy was blind. The second sign told people that they were so lucky that they were not blind. Should we be surprised that the second sign was more effective?

Moral of the Story: Be thankful for what you have. Be creative. Be innovative. Think differently and positively.

When life gives you a 100 reasons to cry, show life that you have 1000 reasons to smile

Face your past without regret. Handle your present with confidence. Prepare for the future without fear.

Keep the faith and drop the fear.

Stim City

"Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a "stereotypy", a continuous, purposeless movement"

I am trying to find something profound to say, something that will stop you in your tracks for twenty minutes and leave you with the happy notion that what you have just read will make an impact on your day in some way. I want to paint a rosy picture that will pull heart strings and induce a warm fuzzy feeling that washes over you like a wave of love and serenity. All this is the polar opposite to reality as what I really want to do is crawl into a bed and sleep for about twenty four hours, then wake up and feel brand new. You see, as the parent of an Autistic child you spend some time looking from the peaks above out over the valley down below, marvelling at the progress you may have made. These advancements in comparison to a "normal" child's are minuscule, but for the Autistic child it is indeed mountainous headway, that is on a good day/week. However, when you seem to slide back down into the valley and can only gaze upwards, to where you once were, does it feel like that you have accomplished nothing. The paralysing despair that engulfs you during one of the "valley" moments can be hard to take.

And so the story goes for the past week. Pearl has been a lot more vocal and is getting into the habit of repeating a bit more. She also seems to be impressing the therapists with her curiosity and aptitude, at home though is where the war is waged. Stimulating her seems to have become next to impossible and she has developed a screech that is let rip when things are not going her direction. As soon as she figured out that the screech was a weapon of mass deafness it became theeee tool in combating Maman and Papa and, once employed could stop us at ten paces. When she is not shrieking at a pitch that is only canine friendly she is reverting back to all her old stims. She bangs her head against the sofa so I fold the sofa into a bed, cant bang your head now can you Pearl?. Her response is, tough sh*t papa I will find two objects and bang them together until your mind is a spaghetti like mess of fried synapses and burned out neurons. Cant find two objects to bang together Pearl? OK Papa I will grunt and rock and roar until the roof caves in the walls fall in on top of us. Think I am exaggerating this Apocalypse? Think again. Ask any parent how hard it is when a child enters the meltdown mode and they will inform you of the dark tunnel into which one enters, praying to see the light at the end. Add Autism into the mix and you have a Molotov cocktail that will wipe the placidity out of any household. We are also attempting to toilet train Pearl at the moment too and with that, single handedly keeping the kitchen towel business afloat. Its going to be a long haul but perseverance will win out in the end I think. As my friend Neil said to me "patience, and a mop is all you need Mally".

Tensions do rise in these situations but I think the important thing is to look at them as speed bumps and not mountains. Think big picture. On the plus side, all her behaviours point towards a little girl growing up and having the tantrums other kids have and that fighting with her brother over a toy is a good sign. She will hopefully be off to school in September with an aide and she will be changing over from one of her therapists to a new lady next month. Lets hope all these transitions are going relatively seamless. We have also found a lady, Emilie, who will work with her four times a week at home from next month on. The money raised so far from Running for Pearl (that has been put in a trust for her) will cover this new helper. So a big "CHEERS" to all who donated and have made that possible. It will free up a little more time that can be spent with our amazing Dylan who is just fantastic. Alicia and I are meeting with the Mayor next week to see how our housing situation is coming along. Alicia has written some harsh letters to him and with every right too, finally we will get him face to face and see how they are going to help us. Our TV slot airs soon we hope and we have been very complimentary to our town, now its time to get some pay back from them.

My running is very minimal at the moment, I have had issues with my left foot which healed fine. Then after about 18km's on Friday last my Achilles tendon flared up really badly. I have not done much since apart from a bit of cycling and ice it as much as I can. My aim now is to make it to the start line of the 50k in eleven days time and see if it holds up long enough for me to complete the race. But I know there are people who have far more grave issues and that mine is like Pearls regression, a blip. It will make me appreciate my training a lot more when I am back in full health, as will I appreciate the good things in my little Pearl, once my ears stop ringing. Wow, I don't feel like that 24 hour power nap anymore, thanks for letting me share. Time now to get stuck back in.

See you round the bend.

Mally.