2011 - Songs from Music Therapy

I learned to key with Jane Remington-Gurney. She is my friend and helper.  She helped me to learn how to work with her on the keyboard.

I met Jane when I was very little (in 1996).  She has tried to help me speak and then to use a keyboard.

The good thing about typing is that it is a permanent record of your thoughts at a time of something happening.

There is truth in the poetry I write.  True words are sometimes hard to get out of my brain.  When they scream really loud I have to get them out to the world.  When I have thoughts I need to have someone ready to facilitate.

I have to say that I owe everything to Jane.

I started music therapy with Jane and Bec (Rebecca Eager) in my last year at school (2010).  The music therapy helps me to find my body and to work on my songs.  This is how it works: by giving me rhythm.

Bec is a great therapist and I have also learned a lot about music from her.  The drumming exercises are really good for me because I need to concentrate on the rhythm and which drum to hit all the time, while I am walking forward and backward.

The start of my writing songs is thanks to Jane and Bec.  Here are some songs that I wrote in music therapy with Jane and Bec.

Free thinking

I find calm in looking at pictures of nice places I have been

I think of the place and when I was there

Just think of the place and the time

Until you learn to have faith in yourself you will get nowhere.

Until you know yourself you will not know the things you need to stay calm.

I think that free thinking can set you free.

(January 2011)

Watch the video of me working on 'Free Thinking' here.

Wait for Me

Questions are freely drumming in my head

They sing and yell and wish me dead

Only answers are floating by, saying I am too clever to die.

So ask me questions and wait for me

to catch an answer floating by. 

 (May 2011)

Hope

Hope is for everyone

Hope is for me and you

Hope is what keeps us in the world and

Hope opens doors

Hope is like a river with energy to flow through life

Under the water is a spring of hope that will come to the surface when the time is right.

Hope is a river that runs through everyone’s life

but like the Murray it is dried unintentionally by ignorance.

The river will only burst its banks if dammed

so don’t damn hope.

The doors will be opened by the person who finds the key

hidden in the depths of the river of hope.

(December 2011)

Videos of me working on 'Hope' are here, here and here. 

This is a picture of me in my room with a painting by artist Craig Roveta on my wall.  Jane asked Craig to paint the picture for me, to illustrate my song "Hope".

Jane told me that Craig had said:

It had to reflect the depth of anxiety, so the darker colours are low bubbling away but the gold represents the hope coming through and surfacing in the end.

Craig has ASD as well.  His strength is art.  Mine is words.  The picture adds to the song and helps other people to understand.

About Physical Support

In the videos I am wanting to get my words out quickly to the reader, so I needed a lot of support.  Now I need less.  This is a link to a video of me working with Jane but using much less support.

2010 to 2012 - Brotherhood of the Wordless

The Brotherhood of the Wordless is a group of people who have no voice except through typing.  The Brotherhood is good because we get to think and talk about a range of things.  The leadership given by David makes us all think about new stuff.

(Items written at meetings.  Some of these have been included in performances and published in books by the Brotherhood.)
 

21 July 2010: Responding to stimulus questions from David Stavenger (Ghostboy)

• David:  Think of two times during the day:  The moment you open your eyes and wake up and the moment you close your eyes.

I am amazed at the sense of being alive.  I feel grateful that I am alive and well.

At night I feel grateful.  I wish that I feel good for the next day.

• David: Think of one of the most significant events or days of your life.  Create a photo of it in words.  Place us there.

      Kirra Beach 
Walking on the beach

I felt totally free and liberated
I wanted to do this for the rest of my life
It was the wind blowing the waves
It was the sun sparkling on the water
I loved the water on my feet
The smell of the salt water
The wind makes me feel carried away from my body
I am just getting the hang of it.

• David:  If you could have a sixth sense – any special sense – no limits. What special gift do you have/would you like to have?  What would you do with it? How does it make the world different for you, now that you have it?

I can tell the best and worst people on this earth. 

The feelings that I have inside me are never wrong. 

The way that people look at me is enough

to get me going into a special openness 

that clings to me after they have gone. 

The thinking that my brain does inside my head is much more than you or anyone could imagine.

20 October 2010: Responding to stimulus questions from David Stavenger (Ghostboy) 

• David:  Write the story of the lines of your hands, as if your lines are talking. 

When I put my hands in my pocket they are hiding from the world. 

• David:  What does it feel like to be a hand gripping something?

I might open the door to its secret by listening to how it feels in my hand.

• David:  Get your mouth to describe what its like to taste 

It tastes new things all the time.  It feels soft and sweet.  The watering of the taste buds melt the cake.  Then it disappears and nothing is left.

17 NOVEMBER 2010: Responding to stimulus questions from David Stavenger (Ghostboy)

• David:  What is the first thing you see when you shut your eyes? 

I want to provide light because I don’t like the dark.

• David:  Finish the sentence as many times as you can.  “In the dark ….  “

In the dark I feel scared because there is no light on me.
In the dark I hear noises.

In the dark I see myself as a monster.
In the dark I feel terrified of myself.

• David: You have fallen down a well.  You are at the bottom of the well.  Describe what you can see.  How does it feel? 

It is dark.  Dark and dangerous. 
When I look around I see nothing.
When I look up I see a glimmer of light.
I have been stuck down here all my life.
I want to get out.

• David: You try to get out of the well.  How would it happen?  Do you make it? 

I can climb out of the well.

The well is not real.
The well is my mind.
I need to think positively and ambitiously
To seek that glimmer of light
I can do it.

Poems written in 2011 for Cabaret performance, 1 December 2011, in the Sandgate Town Hall.

Jazz Music 

When I hear the swinging rhythm of jazz music

I am allowed to speak with my feet.
I can move to the quavers
and feel the rhythm in my dancing feet.

I see the women you dance so free
The sun warms me all over.
I am drifting in the sea of music
and feel alive.

 

Source: http://sandyhaight.com

There is music in my fingers 

I am a dancer in my dreams.

I move and swing and fly.

I dance and sway and glide. 

I will slide and everyone will cry.

You see me. 

I move around the floor. 

I am in perfect time with the music. 

I am in a suit and there are bright lights. 

I like the swing of the rhythm. 

I move without stopping. 

I am in a free mood. 

The music makes me feel awake. 

I am living all my dreams of freedom 

And I like this a lot. 

I prefer to dance with my fingers on the keyboard. 

The music makes my fingers move. 

The music sings from my fingers. 

The music in my fingers talks to others. 

I move all over the keyboard. 

I jump and slide from letter to letter. 

That is my favourite dance.

18 April 2012: Responding to stimulus questions from David Stavenger (Ghostboy)

• David:  Write a classified ad – as if you are selling something. 

For Sale:  Overused body.  Wrinkled flabby guts going two for the price of one.  Slightly dysfunctional voice screeching guaranteed.  Sloshy bowels not for the faint hearted.  Disconcerting views provided on request.

• David:  Create a scenario - 3 different elements:  a thief, a tramp, a shopping centre.  

Crash!  The shop gates smashed. 
“This is my territory” squealed a smelly dishevelled man.

A bit shocked and perplexed by the interruption to his midnight raid, he stood silently bemused.

“So what you gonna do to make me, hey?”

With one foul swoop the tramp uncovered his mountain of worldly possessions in the corner.  The stench wafted through the shopping centre like a ripe exotic cheese.

“My store, my space.  Any take over requires that you face the stench!”

The midnight raider chuckled on the inside.  Little does he know about my nose …..

... To Be Continued

• David:  Look around the room and pick one person.  Don't name them but describe them so others can work out who it is.  Think of their Shape, Colour, smell, hair, sex, mannerisms.

Character description 
Unshaven, young, vigilant, softly loving.

2010 - Dorothea Mackellar poetry competition

In 2010 I won the Dorothea Mackellar school poetry competition with this piece.  The poem came to me in my mind as I was thinking about how to say what was in my mind about music.  The theme was very hard for me because I have mixed feelings about music.

I was so proud and surprised to hear my name called as the winner.  Until then I had no idea that people might like my writings.

Can't Stop the Music 

When I am in my world I can hear music.

I hear it at night

I hear it in people’s noises
I hear it in the places I go each day.
When I talk to people I hear music.
When I sleep I hear music.
Music is my constant companion.
My life is ruled by the music in my head.

Music is my friend but also my enemy.

When you can ‘t stop the music it becomes an obsession.
I can hear the music now
Playing, playing.
Over and over in my head.
Like the waves continually lapping the sand and then getting louder and louder as they crash.

Music is such a comfort

But it can be such a horrible thing.
Music in my head.  Playing over and over again.

People say that love is like a song.

Not for me. Love is not about music for me.
Not a song, not a symphony, not a band playing, not a national anthem.
Music. Music. Always playing.

Such a distraction to a happy life.

I wish the music would go away.
But probably it never will.
Music, music.  Always there.
I think music needs to become my friend
as it’s always my companion.

Like a companion who never leaves your side.

Who stays with you everywhere you go.
Day and night.
Night and day.
How can you become my friend?

Music in my head.

Like a house is not a home
Until you make it one
So I must learn good things to do with the music.

Music, music.
Please be my friend.
I need you to be my friend.
Like a mother needs her child
after being separated at birth

Music, music.
Please, please be my friend
Music, music, music.
Music in my head.
Over and over and over again.
I hear music.
Music in my head

2009 - Leadership article

The article that follows was written by me in 2009 when I was just starting to think that I might write something serious.  I don't know that this is true for other authors but this is how it worked with me.  Only the lonely people can share the pain of being alive but not part of society.  The act of writing gets all the sad things down.  You think there is only yourself until others agree with your words.

Learning to Care and Not Fear Failure

(First published in the Student Leaders e-zine, November 2009)

Hi, I am Ben. Over the years I have not been able to express my thoughts and dreams because I have not been ready to share them with others. People have not always wanted to communicate with me because of some of my behaviours.

Over the last couple of years I have been on a journey of realising people are interested in me, my life and my dreams. It has opened up a whole new life for me. Now instead of being angry and resentful I want to help other young people to fulfill their potential by sharing my story with them. You wouldn’t believe how liberating that feeling is, to know that I have a lot to contribute.

How do you think it feels to know you are just a normal person with normal feelings, but people treat you like all you have is a disability? Trust me, it makes you feel worthless and like you have no power or control over your own destiny. It is not a good feeling.

However, I don’t feel like this anymore. Over the last year I have changed my focus from life being all about me, to me now considering others, caring about other people and wanting to give them a voice. I really feel this is what my vision should be. 

How has this change come about you may ask? Not an easy question to answer. But here are some of the reasons. 

At my school we have a very diverse senior program with many different subjects and staff . This means I have been exposed to a lot of new ideas and people and have seen how different people act in different situations. I have been able to determine the kind of person I want to be.  The selfish kind, who is only interested in themselves and what they can get, or the kind who wants to help others and will go out of their way to make others' dreams come true, even if it is inconvenient for them to help. This second kind of person is, to me, a person who shows true leadership qualities and is the kind of person I aspire to be. 

My school also provides programs that allow students to develop leadership qualities. Our Scouting program has the underlying values of service to others through friendship, responsibility, trustworthiness, courtesy, respect for others and caring for the world we live in.  We are given the opportunity to further develop these skills through the Leo Club, a young version of Lions, and through the WhyTry programme that teaches social and emotional skills.

I think what has helped me the most is the opportunity I have been given to try new things and not be afraid of failure. I used to be so anxious about doing the wrong thing but now I know one learns the most from one’s mistakes. 

To be a true leader you must be prepared to take some risks. But you must also be willing to take responsibility if things go wrong. I am finally able to do this and I have so many more opportunities as a result. 

Recently I received a Caltex award for contribution to the school. I stood in front of a roomful of people with my family and school teachers and principal in the audience.  I felt so proud that I was chosen for this award. Next year I am going on a leadership training day with other school leaders and I’m looking forward to hearing their opinions.  Being involved in all these things is amazing and I would never have believed them possible in years gone by. 

Who would have thought a non-verbal boy with autism would one day be a leader in his school community with big plans and dreams for his future?

2009 - my first poem

I want to tell people about how bad it is to have no voice and how writing songs and poems helps.

The poems allow me to say things I would probably not say in normal conversations.  The real truth is that I would be afraid to say some things just in normal talk.

The start of my writing was just in my head.  Then in 2009 I actually put words down.

This was my first try at poetry:

I Am A Bit Autistic But A Normal Kid 

Think about all the people you know 

I am one of them. 

I am a bit autistic but just a normal kid. 

I am everywhere that you are 

I am a member of the community too.

I am where you are.

I go to the same places. 

I am interested in the same things. 

I read the same books. 

I visit the same places. 

I am just like you but I am autistic too. 

I am a normal kid I like the things you do. 

I listen to your music and learn your songs. 

And now you can learn mine. 

I am a bit autistic but I am a normal kid. 

I am interested in life and you are interesting too. 

I am a bit autistic and a normal kid like you. 

And wherever you are there am I too. 

I am all over the world and in everyplace. 

I see the things you see

I worry about what you are thinking of me. 

I am a different person but just a normal kid. 

I am a bit autistic but I am just a normal kid like you. 

I think there's too much attention on my autism

and not enough on me.

 (First published in “Bayside Sailability Dispatches” November 2009)