Light it up Blue 

 

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Children tell me things 

Well,people tell me things

I don’t know why 

They just do 

Gracie 

A five year-old 

Blond hair down to her knees 

Always tells me 

Absolutely EVERYTHING she has done 

Since the last time I’ve seen her 

And then she asks about my tattoos 

And she may or may not 

Tell me about the current situation 

Regarding her birthday 

And an absolute need for the Ninja Turtles to be there 

And then I tell her mother about my writing 

Or any person for that matter 

I’ve tried to insert it in a very cool way 

I wrote it on poker cards 

Because that’s cool 

And hip 

You know,

“here’s a card 

A poker card 

It has been written on 

With my typewriter 

And doubles as a book mark “

But after like card number fifty five 

You get pretty bored 

And just start writing on paper 

Or sending people the link instead 

Because that’s easier 

Reagan is a real help 

He always asks about my writing 

And he’s doing really good now too 

I’ve written about Reagan  before 

He has autism 

Which is a spectrum disorder 

But recently 

He has driven a plane 

He has shot a gun 

He has built his own volcano 

And reads prolifically 

Autism is NOT something you should be nervous about 

He has done really well 

He even knows not to take me literally 

For example 

88 percent of the time 

He says “oh,you’re just kidding aren’t you?”

Because,he knows, that yeah,I’m not secretly Iron  Man. 

And it doesn’t rain Jello from the sky.

So yes.

Today 

April 2nd 

We tip our hats to you guys 

All of you 

Who have these mighty Autistic loved ones. 

It is not a weakness 

It is a super power 

The Night Garden 

 

The vision

 The hallways 

Are doorways 

The doorways

 are gardens 

And in the gardens 

There is music

As the clocks all strike midnight

Still bodies 

Like statues 

break their oath of silence.

Slowly one by one 

All through the garden 

With white dresses 

Everything is laced in gold 


Peter wakes up

Rubs his eyes 

Walks over to his laptop 

And begins typing 

He types about the statues 

Like dolls 

Dancing in the garden 

He describes the clocks striking midnight 

The sunrise stopping the event 

Until the following night 


Therapy 

Mrs Jones 

Welcomes Peter,his family smiles slightly….

“Peter is showing great improvement.His autism is not holding him back at all…and I believe whether or not his speech developes …he will navigate just fine…”

Her voice fades out into the back ground

As Peter walks outside 

Down the lane 

Where he sees 

Figures 

Waiting 

Jo and Marie

“Hey Peter!.” 

He’s excited now

He only sees them on Thursday 

And today is Monday 

“Come here,we have to show you something.its on the piano!”

They retreat back inside the old church…

He looks behind himself and then follows …running…

And there inside 

Is all the lights 

All the glitter 

All the dancing 

Like dolls 

Across a ballroom floor 

And an old piano 

Marie starts playing 

And the piano paints itself 

With light 

And color 

She shows Peter the keys 

And he begins fumbling through them 

With his quick fingers 

He stops 

And looks at Jo 

“Hey! Look at the ballroom!

That’s the gig! 

Write it down 

This is the music!”

Peter nods 

And watches all the masks 

Move like blood flows

Across the room 

He watches all the lights 

All the food 

And plays 

Trying to remember the movement 

Of the room

This is the play 

This is the night garden 


The Blob fish song

(For Reagan)

Psychrolutes marcidus
If this is your name
Then you’re a blob fish
That’s what scientist say
Cause when you’re a fish
At the bottom of the sea
Off the coast of New Zealand
Other people name you
Or I guess they don’t speak
Your language
I don’t know

I know you’re feeling kind of gross
But up here isn’t that much better
And you get to float around because of your gross
And it helps you eat

I wonder what it’s like down there
I’m sure it probably gets boring
Doing nothing all your life
Just floating there
But then again
Maybe not
My dog does that an awful lot
He doesn’t seem to mind
And then I imagined
Life at the bottom of the sea
And being so blob and slime
It wasn’t that hard After …
I found mums Crisco jar

In reality
The physical element
Did not help things along
Only in mind
Only in my mind !
Oh great day
It’s hard to open doors
And the bathroom
When you really have to go
Or answer the phone
With Crisco on your hands !!!!

So in my mind
Sitting on the floor
I really started to feel like
Psychrolutes marcidus

Until I thought about
Giant Earth worms …
And whether or not
They like crisco …

But that was yesterday
And yesterday’s gone
And now I’ve really gotta go
Like really gotta go
And that’s all I know
About Psychrolutes marcidus
I hope that’s your real name
And remember you’re
Really kind of rare
So that means you’re
Kind of awesome

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Venus fly trap song

(For Reagan)

It’s so tragic
It’s so harmonic
It’s so hilarious
The deals we make
When
Board games are
Boring
who needs
Deals
When
There’s sandwiches
Stacked against
The plate
And Venus fly traps
Out on a mountain
I’ve not climbed just yet

(Hey! Hah!
Don’t go over there
It’s poison isn’t back from the lab just yet…oh it’s effective.)

Who needs
Life
When there’s planets
And plants
And dirt
And math
And numbers
And sandwiches
With macaroni
That I don’t know
The name of
But
Venus fly traps
On a mountain
That I didn’t climb yet
But I woke up sore
After that
I don’t know
I don’t know
(Hey!)

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The amazing Sundew plant. The balls of liquid are scented to attract flies, who once they approach to investigate become stuck to them. The stems then digest the fly slowly and he dies a venus fly trap style death
Image source flickr

The Reagan Syndrome

I had a book
With words!
But the words
Went flat –
I never went
Back to that.

I had a book
With pictures!
But the pictures
Had space,
I fell through
That.

I found a book
With words!
And pictures!
The words ,
Had shape!
The pictures
Had curve
They gave me
A world!
I’m stuck
In that…

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Grace

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I knew a girl named Grace
She lived inside the city
She couldn’t talk
But
She could say more
With her eyes
Than most of us
Say within a lifetime
Of words
Her laugh could make flowers grow
And was as spontaneous
As lightning

She preferred out
To in
Water
Over land
Rain
Always rain

She was a painter
An artist
And with her colours
And a touch
Of magic
Her works
Were like windows
Of expression

She always painted barefoot
colour splashed
From elbow to heel
She played piano better than anyone else I knew
Even though her left side
Was always numb
From an accident when she was young

I remember she loved children
She never forgot a birthday
With a gentle pat and a kiss
On the forehead
She always had something
For them

People came from miles around
To buy her magic
These windows of expression
But still
They asked for words…

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Cerebral palsy

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There’s things
You can’t shake
Feelings
You can’t break
A sister
A child
Seizing in your arms
When she’s
Little
I remember
Your first steps
On Christmas
You reaching out for the tree
You’ve struggled
No
Fought
Your whole life
For your place
Your voice
To break free
I remember
Sitting beside you
And explaining things
Your brother
Moving out
Getting married

I will always
Be there
Explaining
Reading
Drawing
When you like
Boys
And they
Do bullshit
Things
I’ll be there

It’s just
The idea
This idea
Of you drawing up
Your being locked
Within yourself
You
Being put in a cage
After fighting so hard
To break free
To express
That breaks me
But I will
Be there
I saw it when I was
Little
I’ve seen it
Before
This is yours
And I will be there
Again
And again
Again
Once more

9 within the spectrum

This is Reagan
He’s just turned nine
He celebrated by going to Chuck E.Cheese’s

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What you don’t know is that Reagan has autism
Autism is a spectrum disorder
Meaning Reagan is somewhere on a spectrum scale
I’ve written about Reagan before
how autism changed my life
But in a single year
Reagan has substantially grown
And made steps outside of his comfort zone…
He is still Reagan
Creative
Musically inclined
Friendly
But he has developed a sarcasm
And a taste for adventure
Unique and truly his own
Where as before
If I said it’s raining cats and dogs
Or the world is black and white
He would take it literally
Now he understands and will be quick to reply – not just repeat

Today, if you ask Reagan how he is?
he will likely say ” I’m doing ok , how are things with you?”
And then proceed to inform you all about the wonder of
Sky landers
And little big planet ( video games )
And how he has a passport and will be going to Africa soon .
He is open to change , inviting or not …
He is open to meeting new people
( constantly on the look out for a future wife for me – don’t ask me why )
A genius,really.
I know in my heart whatever Reagan does and wherever life takes him
He will succeed
Because he doesn’t see the world as a dangerous place
Where dreams are unreachable
He is going to Africa at the age of nine
He is capable
For him
Just at the age where we learn
To ” dream smaller” or ” settle”
That certain things just can’t be done
The world is expanding into a land of opportunity
Where the only walls
Are the ones he builds himself
But that’s true for any of us

The only walls holding us back
Are the ones we build ourselves
There is nothing but opportunity
We can grow
We don’t have to live a life held to our past
We can take it and learn from it
And then be open to the opportunity
Present in the now
For something completely
Different
Like Fitzgerald said –
” The world only exists in your eyes. You can make it as big or as small as you want’
So stay passionately curious
And expand your borders
Personally
And globally
And like Reagan
Be excited and passionate about it
And why shouldn’t you be?
This is your story after all.