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 Dream Catcher 

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I knew a girl once,who could paint a portrait so real…it was like a window.All you had to tell her,was whatever dream was on your mind.and she would deliver you an image.She couldn’t talk.But she could sign,and children loved her….she would paint animals,and fairy tales.Entire worlds,that they could escape in. Everyone loved her.but they always asked for words….

I knew a boy, who , everyone said talked too much…he couldn’t calm down…

I used to watch him pass by her studio 

Every Thursday 

They say 

Autistic people shouldn’t love 

Or are incapable of real love 

But I don’t think that’s the case 

The thing was 

He had worlds inside his head 

And she, galaxies inside her hands 

Neither one 

Could handle large groups of people 

There was just too much energy 

Too much going on 

It wasn’t that they didn’t care 

It was that they felt 

Every emotion in a room 

And it was an overload 

I remember he would leave her letters 

And she would read them 

pulling her hair back over her ear 

Paint staining her elbows 

And ankles 

Finally one Thursday 

He didn’t come by 

And she looked for him at the window 

All afternoon 

His sister had passed away in a car accident…

It was a Sunday 

When he showed up 

Out of schedule 

In the rain 

After the funeral 

He didn’t say anything 

He just sat down beside her 

And rested his head in her lap 

I knew a girl once who could paint you a window….

But people asked for words 

Until she met  a boy 

Who could feel the words 

In her hands . 

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 


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.

How Autism changed my life

Image

 

This is Reagan .

Autism is not a disease, it is a spectrum disorder. Meaning, Reagan  is somewhere on a spectrum scale. His brain is wired completely different than any other child but it’s not broken. He sees things at face value. Black and white. If I say it’s raining cats and dogs, he expects it to be raining cats and dogs. His memory is phenomenal, if he meets you once, he remembers your name and where he met you for life.  If I put a problem in front of him, he doesn’t see a problem, he finds out how it works and then  see’s a solution. He may struggle with empathizing with others. Not because he doesn’t care,  he just communicates, see’s things differently. With him everyone is a friend. There’s no strangers. Just potential friends.

You can’t pretend to listen to him. He knows if he has your attention or not- but then, most kids are like that.

in essence..  knowing someone with Autism is… learning to see the world from a different  perspective.

Most importantly, how to  communicate differently so you are understood. My brother, is a genius who cares about people and can’t fathom a person hurting another  intentionally .  His creativity is off the charts, like many Autistic children .

Reagan is sensitive to loud sounds and music …so is my sister Angela…but they both love music and love to dance

So I dance with them . They like my stories but hate to read …so I  read to them  …adding my own twist to the stories…maybe they won’t notice when they start reading themselves .

I remember when my sister was born ….she stopped breathing …and it caused brain damage  resulting with epilepsy . and an inability to speak . There is no words to describe what it is to see a child suffer with  Seizures  …..none ….I remember  a few years ago when her medicine stopped working .She wouldn’t stop seizing . We took  her to the children’s hospital in Huntsville or maybe Birmingham? ..it’s all just signs and rain in my mind now.  Dad didn’t come to the hospital that night, I remember him calling mom though and asking what he was supposed to do about supper. I knew  in that moment the state of things at home. Thinking about Angela,  that phone call and watching the weather outside – it was Tornadic ( very common to Alabama )  I felt something touch my leg …. Angela’s foot. She couldn’t calm down and she couldn’t get medication until she calmed down. I laid down  beside her and held her until she fell asleep ….. what did the future hold for our family?? Dad should have been there but  somehow, with it all, I was just glad I was .

I’ve seen people my age …not the age I feel  …but my age, complain and say things because kids today  have so many things they didn’t. They wish all the kids in the world had what they had.

well , I just don’t understand that at all . If you had so little , why would you not provide for a child .

we had very little growing up. I started buying things for the family when  I was 16 .

These are the children in my life .

My father passed away .

Whatever he was , whatever  he did  is done .

Like that night in the hospital , I’m just glad I’m here .

And they make me better for it .

I can’t tell this story like my mom …or like a Dr. Only a brother.

But I’m glad it’s mine .