lately
Category: autism
Light it up Blue
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
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!)
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…
Grace
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…
Cerebral palsy
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
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.
Regarding Samuel 