A Christmas Carol

I'm anxious in anticipation,
The time is drawing near.
The lights and bells are out
and people in good cheer.

What will Santa bring?
Will it be presents or things that
consume me for the next year
until again I sing.

The shops are all crazy
hustling customers about,
dollars signs in their eyes
to blow our pockets out.

The carols are playing
in my mind and my heart,
but nothing compares to family
who are with me from the start.

So have a cup of good cheer.
Stay safe with family and friends.

Music Composition - "Minute's Silence"

I have told you before about the Dorothea Mackellar award.  I won it for a poem about the music in my head.  This was the first thing that showed me I could write things that people thought had meaning.

The award was presented to me by Chloe Charody, who is an Australian composer.  On her blog she said:  "If only I could hear the music that was in his head - I would score it out for him and try to make music become his friend instead of his tormentor".

I had the Lightwriter for the words, but no way to write down the music.

That was a long time ago and I have learned a lot since then.  Since I wrote that poem I have worked with some wonderful people: Jane and Bec, Matt, Jono and Steve, and Harley.

More recently I have been working with Nancy Kiss, my piano teacher, who helped me to understand music.  Nancy showed me the formulas to understand the building blocks for music.  She has also made me no longer scared of the number of keys on a piano.  Nancy showed me how to play piano from a book of music.

Belinda McNamara, who is my music therapist, helped me to take the music from my head and put it on paper.  My work with Nancy had made it possible for me to play the notes on the piano to match the music in my head.  Belinda could then write them down on a music staff.

The first song I worked on was "A Minute's Silence".  I wrote the lyrics for this song in 2012.

The following video shows how this worked.  It is a different song called "Young" and one day I will finish it for you.  Belinda can hear me play a note and tell which one it is.  Mum and Dad cannot do this so the process is a lot slower as this bit of video shows.  It also explains why I need to learn to write my music direct onto the computer.

After I had written the notes I chose crotchets, quavers or other notes from a choice board so it ended up sounding like this:

I wrote the music for "Minute's Silence" before the music for "Young".  That first time, after I had written the notes for the melody, we tried out some different note durations.  Belinda played options and I listened and chose the one I liked.  When we did the base Belinda told me what might fit with the melody and I made choices as I heard the options.  Then we could put the composition onto the computer and play the first version.  Here it is with the lyrics written in so you can follow along as you listen.

I am starting to learn with Adam McNamara, Belinda's brother, who is very good with IT based music programs.  At the moment we are working on the arrangement for "Minute's Silence".  Soon I hope to be writing music directly from a music keyboard to the computer, where I can then work on the arrangement to make my music come alive.  I will write more about this next stage in another post.

Painting

I was recently at a meeting of people who communicate by typing.  This (below) was my response to a question about art and painting.

The pictures are of me working with Janet, who is the art teacher at The Tertiary Place (TTP).  We paint together on Thursday mornings and I look forward to these sessions every week.

The gift of the paint is presented before me.

Then the picture in my mind's eye flashes up on the screen of my thoughts.

Reality becomes a mixture of light and shadows and hues which reverberate through my senses.

Ready to organise my body with each stroke and watch the canvas materialise into the projections bursting forth from the void in my head.  Some deep unknown mystery.

To brush and weave colours is a beautiful process unfolding.

Environmental Support

In my last blog there were two video clips and this time I have more video from the same session with Matt.

This video (transcript below) illustrates things that can distract me from good typing.  Things like rain and traffic noise and even having mum behind me with the camera.  I think that there are lots of people the same.

Transcript

Ben 

Why can I face the camera and feel fine but feel uncomfortable when I can’t see the camera?

Matt
Hey – that last letter.  Great work because it’s easier finding it when you are in the rhythm, but you’d stopped the rhythm.  I came back here and you found the letter “a” to finish it off.  Well done.

Ben
Do you think I do need to be trying to type more like this?

Matt
You are trying to type like this, alright?  I think you are doing enough trying.  You’ve got to get that balance right between enough time trying to type faded, which is a little slow at the moment, and typing faster.  I think you’re getting a good balance, alright?

Now, you did a couple of times there some great stuff, in terms of you started off from around the hip before you actually got the rhythm.  The only thing you needed from me was the pull-back to the midline in terms of a starting point.

More feedback from Matt - (video here)

Ben, when you veer off to go towards the right side – which is something that I think I’ve noticed with you from day one, is that slight veering to the right – when I see that happening when I’ve got the hip support, that’s when I grab your hand and bring it back and place it at that midline mark.  It’s like that re-setting, which is something that I get the impression you’ve done from a very early age – because one, you can feel it and two, because I know Jane [Jane Remington-Gurney, who first taught Ben to use Facilitated Communication].

Usually when starting off fading what I’ll do is I’ll fade back the support towards the end of the word.  So the person has got the rhythm, and they would potentially have the motor plan there for some of the words.  So it’s easier at the end of the word because of them not having to initiate that motor plan, which I think is then connected with the rhythm – somehow – not being interrupted.  But what I’ve seen today is Ben, you’re having many interuptions to that rhythm, but you’re managing to get it back up and running and initiate the completion of the word you were half way through.

Physical Support

I want to explain why it has been such a long time since my last blog.

A group of people within an organisation called ISAAC (International Society for Augmentative and Alternative Communication) have been trying to discredit Facilitated Communication (FC) for many years.

The ISAAC Organisation decided to put out a position paper on FC and they put together a group of researchers most of whom did not believe in FC.

Lots of people around the world provided evidence in favour of FC but this was all ignored.

The position paper was accepted by ISAAC and will be published soon.

Mum and Dad put a lot of time and effort into their submission and are now thinking about what comes next.

There are literally thousands of FC users around the world who are feeling threatened by the ISAAC decision.

I say that we cannot allow ISAAC or anyone else to take away our voices.  This blog may help you to understand more about FC.

While Mum and Dad have been focussed on the ISAAC research it has not been possible to prepare the videos for this blog.  They and I hope you will understand.

About the Videos

I remember the early days with Matt.  It was difficult for me and no doubt for him.  Then things got easier as we became used to each other.  After a few sessions Matt started to fade up my hand wrist and arm.

These videos show the process and how Matt would explain things to me.  I hope you find them both illuminating and entertaining.

Transcript - Part A. (Click here for link to video.)

Ben: 

Typing is going to be dodgy today.

Matt: 

What makes you say it’s going to be dodgy today?  You know, your typing actually is beautiful today.

Ben:

Typing this way is fine, but hard when you touch shoulder. 

Matt: 

Hmm.  So what are you thinking about today? Do you want me to go back to the shoulder and challenge yourself?  Or … 

Ben:

Sometimes. 

Matt:

Well, you just let me know like you usually do.  Then I’ll come back. It’s good to have a mix of both, hey.  One of them is like – when you need fast communication – fine.  If you’ve got something that you want to write.  Or you’ve got something in your head that needs to get out – that’s fine.

Tell me something .  Is it something that’s important to you – like, typing with a touch on the shoulder?  Or not?

Ben: 

It is, but it’s hard.  Especially when I need to think lots about what I am typing.

Matt: 

That makes sense, you know.  That makes a lot of sense.

Ben:

Do you think I could get past shoulder?

Matt:

Yeah, I do.  I think you’ve done past shoulder before.  Like, that is past shoulder.  That’s back touch.  You’ve had back touch before.

 

Transcript - Part B. (View video below.)

Ben:

So where to after back?

Matt:

Well, in fading, it’s either going down or going up.  Although … up – towards your head – looks daggy.  Something about someone putting their hand on your head, looks daggy.  But apart from that someone was telling me there’s also a spot, like, lower down which is something to do with nerves and something to do with proprioception and kinaesthesia …

Ben:

Oh, do you want to try it?

Matt:

It’s not up to me.  We can give it a go, but I don’t think it’s about being “ooh, we’re going to start off here”.  It’s about, when your typing is holding your focus, OK, so that you’ve got a rhythm started within your typing, and then that helps you to keep that rhythm going when I don’t give as much touch support.  Alright?

So I can ask you that question.  “Oh, do you want to try it?  What do you think?

Ben:

Sure, but I may get crabby.

Matt:

What do you want me to do if you get crabby?

Ben:

I want you to tell me to keep going.

(While Ben is typing this line, Matt fades physical support to waist.)

Matt:

Look where I was.  Well done.

Cathie:

Ben. That was fantastic!

Ben:

Really cool!

Matt:

OK.  So see how my job is to work out when you are firing on all cylinders – when you are going great with your movement.  That’s what’s happening.  I noticed it straight from the go today.  That’s good.

Get in a good position.  Make it easy on yourself.  That’s the way.

Ben:

Do you think I can do it again?

Matt:

I know you can do it again.

(To be continued in the next blog.)

We are just back from a frenzy Spectronics Conference at Jupiter's Casino at the Gold Coast. We really enjoyed it.

I thought it was a great opportunity for me to attend and see how much work there is in setting up such an event.

I would like to say thank you to them for caring about people like me who need technologies to overcome their disabilities.

I would personally want to have Kevin Honeycutt at every conference it is possible for me to attend.  I wish I had had a teacher like him at my school.

Words

I remember writing these scribblings as if it was yesterday.

I wanted to get it right straight off but it was impossible so I wrote a number of things.  It is very important so I had to look at all aspects.  Each piece was right on it’s day.

(January 2013) 
The beauty of having a voice

is the relief
of freeing burdensome thoughts from your mind.

(24 January 2013) 
Words fill up the spaces in my thoughts. 

Sometimes random, sometimes linked,
But always invasive.

No matter how hard,
How hard I try,
They stick inside until the end of the day.

The more I seem to want it,
The more I crave,
The harder it is to evacuate this lexical craze.

Spinning and swirling is a word in my mind.
The power of words will sometimes leave me behind.
Hoping and trying to set the word free.
Hoping that more words don’t gang up on me.

The freedom is there a word can bring to the stage.
Its imposition and annoyance can make you fill up with rage.
What comes first the word or the thought?
Or maybe it’s a marriage that can never be fraught?

The harder I think the easier it gets
For cracks to appear for the words to slide in.
I’m always at my weakest when the hope beacon shines,
Or when excitement forces words in under enemy lines. 


(5 February 2013) 
Repetitive thoughts trapped with nowhere to go.

Thoughts blocked at the mouth by some invisible force
Bounce round my head with ever increasing speed,
Looking for an exit point to burst through.

Sadly no release sees them couple together,
Creating pairs then more,
Giving birth to destructive thoughts trapped in a cerebral breeding pit.

Thoughts within thoughts. 


(18 February 2013) 
Floating inside, Occupying space.
Some have no reason, Some have no place.

Sometimes wonder if there’s any way out
For the misguided words that hover about.

Perched near my lips, so close to escaping,
They turn into noise described as grating
On ears of those positions around
In unfortunate places, exposed to the sound.


(16 April 2013) 
Stilted thoughts echo round my head.
They dance and weave between each other –
Not conversing, not acknowledging each other.

How is it possible for separate thoughts to coexist in such a manner?
Trying to track their path is futile.

Consumed mental energy drives me to the point of exhaustion.
Surely such a state would deplete thoughts?

Sadly not.

Judgements

When I wrote this I was thinking that whatever was going to happen would happen despite any amount of worrying.  It helped me to accept that I was who I am and had to make the best of it.  I am able to make progress because I accept my basic condition.

Judgements

Talking to the child about the backbone of their life,

Their past, their present strife,

only causes grief and pain.

Skipping past the potholes in the path along the way,

Not for tomorrow, but today

is the way she made her gains.

Try it some time, to discover your mind.

Can you look inside, but not start and yet stop?

For it will just happen anyway.

Tell the world to listen and you'll get a blank stare.

It just happens.  Have no fear.

For the world will just keep spinning anyway.

All is said and all is done

to, rather than because.

The truth is there.  It needs no fuss.

Just a little bit of understanding.

Chorus

Judgements fall but come to pass

when living with a heart of glass

they said your mood spins way to fast

for you to keep your sanity.

(Written 13 November 2012) 

 

 

A new voice

Hi!  I hope everyone is having a great 2014.  I am looking forward to this year because I am starting to understand music and hope to put some lines to music.  I'll let you know how I get on but for now here are some short lines I wrote in 2012.  I was just playing with words, enjoying my new voice on the new Lightwriter.  (My old Lightwriter had not worked for a long time.)  The difference is massive - without a voice they are just words on paper.

The Struggle

Think of a time when,
Through no reason or rhyme,
You find yourself trapped in a space.

Now that you’re there
Its awfully clear
There’s a need to escape with much haste.

After a while of moping around
And delicately fixating on all matter of sound
You realise it’s not all that strange.

For this is reality.
At times there’s a haze
That can last just a moment
Or up to some days

But adding it up
It’s worth the struggle and rage.

Written 18 September 2012, using a Lightwriter on trial loan
 

The Cat

What would life be like if I was a cat? 

The indulgence of roaming freely over undulating landscapes 
feeling the different textures pressing up against my padded feet.

Scanning the land and skies for any resemblance of food, 
alive or already pre prepared on the roadside.

Taking the opportunity to use my excuse of catliness

I let my inside rascal out.

Scratching the carpet creates joyful muscular ripples

dancing down my limbs and back.

Showing my tumultuous mood I leer at the neighbourhood moggies

tempting them to a half play half serious fight.

Written 9 October 2012

Lines on the arrival of a new Lightwriter

The morning sun sparkled on me 
the day my new voice broke.
The sky was clear, the hopes were high
the day my new voice broke. 

The days ahead will hear my thoughts
And future friends will know me by sound 
All because my voice broke.  

Who knows what other voices 
may come years down my life?
Maybe a fat bald man’s 
Or a rough truck driver?  

Or maybe even my own? 

But today is a happy one
Forever known as 
The day my new voice broke.

Written 6 November 2012, having received my new Lightwriter