Context Part 1

Ever been at the beach tried to walk exactly in someone else's footprints? Ever tried to match their stride, the angle of their feet? It’s an extremely hard thing to do its uncomfortable and unnatural.

However heading in same direction and reaching the same destination isn’t that difficult.

Does it matter how far apart your steps are or how fast to you decide to go, so long as you head in the right direction.

People less capable than you or I have climbed mountains, crossed deserts and even the poles on this principle alone.

One of the hardest lessons we have to learn even as an adult is to not compare ourselves to others, it’s ok to be inspired by other people and try to replicate their qualities in our lives. But when we fall into the trap of trying to live up to our image of who we think they are we will always fall short and be disappointed.

It’s really a recipe for a crap life.

Fact is they have not faced the exact obstacles you have, their personality make up will be different and there coping mechanism will have been constructed out a different set of circumstances.

I often find myself falling into the trap of comparing myself to other parents, why can’t I be more like Bob or why can’t I be one of those people that never lose their temper?

It’s almost like saying why can’t I play wing for the All Blacks, sure I have a great side step and depending on how my political leanings are that week I could easily fit on the left or the right wing. The fact is I was not born to play wing for the All Blacks. (Though I still dream about it from time to time).

I was born to be amongst other things passionate, caring, creative, determined, humorous, thoughtful and loyal. The flip sides of those traits are that I’m prone to melancholy, I’m often in my own little world and can get incredibly frustrated and despondent when things don’t go the way I think they should.

The best thing we can do is get better at the things we are good at. This will leave increasingly less space for things we are not good at.

Jumping over the sun

People keep telling me about God. I’m not too sure about God, he lived in a cave and died on a giant letter t. But when Dad told me he made the world in seven days I changed my mind, God must be alright because I love numbers and I know all the days of the week and what happens on each day.

Monday is a school day. I usually know what the letter of the week is already, I can remember it from the week before. I can remember just about everything. I can remember when Mum bought me my cat in the hat cards and I can remember when Dad broke his tail bone jumping down a sand dune at the beach and he made a funny noise.  I can remember that Greg and Truly live at number twenty six and I know the numbers of all my friends houses. I live at 22, my house is yellow and all the leaves on our trees have fallen off because it is Autumn. Autumn comes before winter. All our trees have numbers. Number one is in the front yard and has Ruby’s swing on it. My lunch box is blue.

On Monday God made day and night.

At night time at eight o’clock I put my pyjamas and magic pants on and have my quiet time (my magic pants are actually a nappy, I don’t think Dad knows that). At nine o’clock I am supposed to go to bed. I am not allowed to start a project at nine o’clock but that’s when I get some of my best ideas. I am usually asleep by ten, but not always. I have a blue lunch box.

On Tuesday God made the ocean and the land. 

Tuesday is a school day. I like school, one day I want to be a teacher. I teach my animals everything I have learnt at school that day. Sometimes this takes ‘till well past ten o’clock. Mum lies down with me to help me get to sleep, my mum is warm and smells better than Dad. Mum and Dad yawn a lot. Sometimes I yawn too, I cry a lot as well. I have cried and screamed so much I have lumps in my throat called nodules. I went to hospital to find them, when I woke up Dad was sitting beside my bed with Lion and I had some new silver teeth and a drink of water. I have a blue lunch box and my book bag is blue.

Wednesday is a school day, after school I go to dancing. I like to dance, I slip over a lot. There are some questions I have no idea how to answer. I know happy face, sad face, surprised face, grumpy face. When Mr Campbell yelled at me for running through the mud it made my tummy feel funny and I didn’t know why, I wasn’t hungry and I didn’t need to fart. I spent all afternoon trying to stop my tummy feeling funny until Mummy came and got me from school.  Dad asked me what had happened, I told him and my tummy started feeling funny again and I couldn’t go to sleep. My blue lunch box has a place for my water bottle.  

On Wednesday God made plants and trees, the trees all have numbers. My favourite is number twenty four.

On Thursday God made the Sun and the Moon and the stars. I can count all the stars, there are 406 and know the names of all the shapes of the moon. Sometimes the moon comes out in the day time.

Thursday is a school day. The word of the week this week is ‘you’ and the letter of the week is ‘z’. I know the names of lots of shapes, more names than Dad knows. Dad doesn’t know how to spell February, he has to ask Mum. I have to write the word of the week in every page of my new scrap book. It has one hundred and one pages. My Mum is amazing she makes me green eggs and ham. When Dad says, “do you want to say your prayers” I say “your prayers”, he always laughs? I always say God bless Mummy. Mum and Dad take turns to go out on Thursday night. I hardly ever start a conversation, when I do Mum and Dad always listen and have a happy face. Once I told Dad I loved him, we where sitting on the couch at uncle Stu’s place. Dad had eye water. I haven’t said that to him again. If love makes you feel warm and safe and smells nice, then I love my Mum too. I have written my name on my blue lunch box.

On Friday God made fish and birds. 

Friday is a school day. Everything needs a name tag I have made so many name tags they fill a huge bag. We had a disco at my school, I was watching the numbers change on the clock until it was time to go. It was dark and too loud, we came home and had a disco in the lounge. Dad always has a happy face on Friday. Some times we have fish and chips on a Friday. I’m glad God made fish on a Friday otherwise we would have birds and chips. My blue lunchbox got broken, now my lunch box is green. 

On Saturday God made the animals, man and woman. That was when he made my Lion and my Mum and Dad. If Adam was the first man then the first woman must have been Michelle. Adam and Michelle are just up the road. Michelle taught me how to do a cow kiss, thats when you lick some ones face. 

On Saturday mum has a sleep in. I have to wait for her to wake up before Dad and I can go out. If I have stayed in bed at night during the week then we go shopping. I like to go to K-mart or the white board marker shop. At K-mart you can make the toys go beep on the scanner. I am allowed to spend five dollars. I make all the different plastic animals and dinosaurs go beep, it can take a long time. Dad brings the paper with him when we go to K-mart. 

On Saturday Dad also takes me go to the park. It is very important that went go the right way to the park, I have to check off different things in my head before we get there. If I don’t it doesn’t feel right and I make Dad turn around. I like the park with the two yellow slides and the number park. Once we went to park, Dad walked away from me and he started getting smaller, I yelled out “Dad get off the grass it’s making you shrink!” Dad laughed and had a happy face. 

I also like power poles, I like to draw them and make them out of lego. On Saturday we sometimes drive around looking at different power poles, I have names for all the different types of power poles. Some power poles look like giant letter t’s.

I don’t know why people freak me out. Some times when someone says hello to me I scream at them or yell at them, I don’t mean to, I just get some many things happening in my head thats all that comes out.

I scream at people at church sometimes.  

On Sunday God rested, he must have been tired after making all those things. I wonder what time he had to go to bed.

The world that God has made for me is sometimes a strange and confusing place. I sometime wonder if he was thinking of me at all when he made it. 

I like it that he made water, water seems to slow everything down, even all the things that are happening in my brain. Mum and Dad took me on holiday to Grahams Beach, Dad took me swimming a lot. I would go into the water right up to my neck and ride on Dads back, I liked the feeling of the water all over my skin, I felt calm and my head was quiet.

The way my mind works does not match up with the way other peoples do. Sometime this is hard, sometimes it’s fun. I see and think things other people can’t. 

When we went to the park and Dad jumped from one shadow to the next shadow, I did the same except I jumped over the sun. 

Introduction

Most stories begin with an end in mind, our story does not yet have a conclusion. Our family is a work in progress.

Mid 2007 our son Jasper was diagnosed with aspergers. Aspergers is described as high functioning autism. Our Jasper is an incredibly bright wee man, so creative and does all most everything at a hundred miles an hour. However he lacks social instincts and an ability to communicate that we take for granted.

Jasper has no difficulty with his speech he just can’t communicate or translate clearly what’s going on in his head. This often leaves him incredibly frustrated, so much so that we often have incredibly intense tantrums.

By the time Jasper was four he had screamed and cried so much he had developed nodules in his throat, consequently he has a husky voice. 

Jasper is also prone making random noises, or phrases most of the time he’s imitating something he’s heard. Sometimes it his guinea pig, sometimes the sounds other autistic kids that he’s had contact with make. At the moment it’s the phrase, dumb fart or fart pants. 

Its sounds amusing but it’s often the thing that breaks me down.

My wife and I are constantly working with Jasper we’ve taught him the different facial expressions, but he still lacks the ability to read people. He often wont realise someone is annoyed with him until an extreme is reached.

He has no real clue how to interact with other kids. The other day we were at the park an other boy handed him a light saber and asked if he wanted to play star wars. He didn’t know what to do. We asked later how he felt when the boy invited him to play, he said ‘Surprised’.

I’ll often ask him who he play with at school, mostly he’ll he played by him self.

It’s our next challenge to teach Jasper how to play with other kids.

There are so many things that they don’t tell you when become a parent, the tiredness, the pressures it puts on your relationship, the fog of the first few months and the feeling you making it all up as you go long. They also don’t tell you about  the extreme love and bond you have for your child, the sense that you would do anything for them.

I can still clearly remember holding Jasper for the first time, it was an extremely drawn out birth, Adele was completely spent so for at least the first hour I held Jasper as he sucked his fingers a looked around the room. This is my boy and I will do anything I can to help him grow up well, safe, secure in himself and help him under stand the world around him.

Since then I will admit openly that I have moments of complete despair. I’ve lived with a guilt that I passed on the genes that mean Jasper is likely to struggle in most aspects of life. I share some of his traits and some of his anxieties but they in now way as severe as his. 

I will also admit to yelling at him, loosing my temper with him, ending the day after he has finally shut down and feeling deep sense that I could have done better.

We are all working together to help our boy feel like less of an alien in our world.

May we never loose the determination to draw the best out of our boy. Honestly when the red mist clears and there are no black dogs hanging around the door I count it a privilege that I’ve been trusted with my boy.

I’m not writing this blog to encourage your sympathy or to hold myself up as a super parent. I simply want to highlight through our struggles what I have learnt to help others that are beginning the journey with this mystifying disorder, Maybe you can learn from some of mistakes, share in some of our victories.

I also want to maybe transfer some of the judgment and misunderstanding that is directed at parents who have some very public struggles with kids like Jasper. 1 in 100 children are now being placed on the autism spectrum. Chances are you will know someone or will encounter someone who has similar struggles to us.

Hopefully our story will help you empathize and give you and insight into how you could help.

I’ll begin this blog with a short story I wrote about Jasper after a trip to the park. It’s an attempt to give some insight to just how differently Jasper sees our world.