Real.

Real.

Ask any autism parent and they will tell you:
when their kid gets fixated on a toy- that’s it.
You better have a back up.
You better not lose it.
You better be able to produce it out of thin air when needed.

In our household there are several standbys that are always handy-
Slinkys, Legos, phone cords, spinnings and books.
And now we can add a new one.
Jackson has decided he has a new favorite toy.  He pokes it, he prods it, he pats it, and he delights in it.  He throws Legos at it.  He laughs at it, and he cuddles with it.

The toy?
Me.

Jackson will request:
“Tina sit with you?”

And so I do.

He will bounce up and down.
He pull up his blanket so it covers us both.
Then?

Then the fun begins.
He will poke my eye and smile.
He will pull on my chin so I am face to face with him.
He will burp on purpose so that I will make a face.
He will pull on my braids and laugh and I make a face.
He will wrap his hand around my necklace and repeat “Tina necklace” over and over.
He will put his arm around my neck and smile broadly at me.
Sometimes we even sing together.

And on it goes– for as long as I will let it.
And how long will I let it?

For as long as Jackson needs it.
For as long as Jackson desires my presence.
For as long as Jackson.

Because THIS toy will not get lost.
THIS toy will not mysteriously disappear.
THIS toy is built to last.

THIS toy is real.

 

“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”

“Does it hurt?” asked the Rabbit.

“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”
Margery Williams, The Velveteen Rabbit

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Saving grace

It was a cool and overcast afternoon.
Jackson plopped himself down on the couch and stated, “Yes, shoes on.”
Shoes on, then a sweatshirt pulled over his head, he stopped to  pick up a Slinky from the floor.  Then he picked one up from the couch.  And another from over by the door.  (Yes, it is true: our home is lousy with Slinkys) Chubby hands full of Slinkys when Jack spies an “open”.  (to you and I its a wire basket.  to Jackson, it is an “open”)
Hands full, Jackson heads out to the door and settles onto the swing.
He stimmed.  He swang. He rearranged the Slinkys in a pleasing manner, and laughed at the wind.
All of Jacksons motions are deliberate.  There is never a wasted motion.
This continued for a bit and he gathered his treasures and made his way across the yard to the fence line.

I took this moment to sit myself down on the swing and enjoy the afternoon and the view.

And the view?
Jackson playing with his Slinkys by the fence.  His left index finger poked at the corner of his left eye.  His right hand above his head- Slinky bouncing from his fingertips, just grazing the ground.
I call out, “Jackson!! No poke-a- eye!” and his left hand snaps down to his side.
He bends over to pick up another slinky.  It is connected to another Slinky and the wire basket.
I rise to help him.
Then sit.
He hasn’t asked for my help.
I watch him work his way through it. The first Slinky gets set down on the ground and both hands start working on the tangle.  His head tilts to the side with a purpose.  Something about the crosshatch of of the wire basket and the Slinky catches his fancy and he smiles.
His hands work again.  The head tilts.  Another smile.

Soon, Jackson has worked free the tangled Slinky and rises up with two Slinkys — one in each hand.
Standing now, a breeze fluffs his hair as well as the plastic coils.

He is happy with himself.
He is happy with his work.
He is in a moment of grace.

I needed this lesson– to let things unfold– not to rush into solving a problem that wasn’t even a problem.  To remember that Jackson CAN ask for “help with it”– and to let him work out what he can– or chooses to.

Because sometimes a tangled mess of Slinky’s can lead to life’s great lessons.

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Dancing in the Moonlight

Hang on….
We are gonna need a soundtrack for this installment.
Please, go HERE and listen.

So yesterday, Jackson’s daddy put up a Wind Catcher that he had purchased at Costco.
Call it a Wind Catcher.   Call it a Garden Spinner. Call it whatever you want…….. JACK will call it a “Spinning” And from the time Clay took it out of the box and began assembly Jackson was engaged and interested.

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HOLY CATS!
This thing spins in TWO different directions.
It catches the LIGHT!!
It casts the most amazing shadows!!!
And……..
IT’S RIGHT THERE IN JACKS BACK YARD!!
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Oh how delighted he was……
He stood there and played for hours….
Threw rocks at it. Threw pieces of fuzzball at it.
He spun it with his hands when the wind died down and was beside himself with Joy watching the shadows it cast.

But, there is always a down side to obsession with autistic kids.
You can’t reason.  You can’t explain temperance.  You can’t advise on moderation.

So Jack was none too happy to step away from the spinning.
I fed him outside.
He got on an extra sweatshirt.
And he stayed till dusk turned to dark– still laughing.  Still happy……

And when it became too late to stay outside, I braced myself for the struggle to get him back in.

I needn’t have.
I went outside and stood next to Jack in the moonlight.
He smiled.
He said “I see the spinning, Tina.  I see the spinning.”
I told him that I saw it too.
He must have know it was time to go in, because he turned and started walking back to the house with me.
He stopped mid way.
I turned to face him and he put his arms out.
I leaned down and he put his arms around me.
Then he began his happy dance, his happy song.
It basically consists of Jack rocking back and forth with a little bounce and chanting : “anu, anu, anu , anu, anu anu”

Time stood still at that moment.
I gave myself up to his song and his dance.

 

And like the lyrics go….
you cant dance and stay uptight 
its a supernatural delight 
everybody was dancing in the moonlight

And Jack dances divinely.

 

 

Poetry readings

Poetry has always had a high priority in my reading life. In my teens I discovered major poets and also some that were rather obscure. I read with a thirst.  Words came alive to me.  Some poems,  like Burroughs’ Waiting have stayed with me since my first discovery in my teens.  I often reread it and find more to it.  More depth. And an even stronger connection to it.
I have passed this poem on to my daughter too– hoping that it will resonate with her.

Ah.  My 13-year-old daughter.  An exquisite creature who is off beat, and takes life on her own terms.
If poetry was humanized, SHE would be free verse, spoken word.  Vital.  Vibrant.  Off in all kinds of directions.

But THIS is a blog about Jack, isn’t it?

Jack who I lay next to each night as he falls asleep …….
Once Jack falls asleep, I text my husband to let him know all is well in the back bedroom and I will be out shortly.
About a week ago, in a playful mood, I decided to write a haiku rather than texting:
“Boy asleep, out in a mo”
A haiku.
5-7-5 syllable structure
It went

Softly sounds of sleep
Permeate the dark room
Jack at peace for now

I was quite pleased with my cleverness.
And so the next night I repeated the idea:

The boy snores soundly
Exhausted from being Jack
The good kind of tired

And so, being a dork, I decided to finish out the week the same way
(I am NOTHING if not a creature of habit!)

The boy sound asleep
Dreams of things that we cannot
Sleep sweet dreams, Jackson

He speaks of his day
The trees,the spinnings,  daddy
His mind is a book.

The boy falls asleep
Without a sound or a fuss
Dreams of Darrah’s room.

Daddy’s arms are strong
The best place to fall asleep
Jackson loves Daddy

Then last night, it hit me…….
Jackson IS haiku.

Jackson is haiku
He is a steady rhythm
Compactness of words

Jackson IS haiku
he’s juxtaposed elements
spare and raw beauty

Jackson IS haiku
he’s deceptively simple
yet years to master

Ask any parent of a special needs child:
There is poetry in their very existence.
Sometimes it’s Ginsberg’s HOWL.
Sometimes it’s the very structured iambic pentameter of Shakespeare.
Sometimes it’s the be-bop cool of Langston Hughes.
And sometimes it’s all their own- defying any box or parameters.

I invite you to keep your eyes, ears and heart open for the random poetry readings that may occur in your life.

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Effortless Doing

Maybe I haven’t made this clear to you:
I love Jack.
I love Jack differently than I have ever loved anyone or anything before.
I can see you shaking your head…..”well, DUH!” you are saying to yourself, “of course!”

But

it’s not that simple.

This is not to say that I love Jack BETTER than I love anyone else.
I have a daughter that I gave birth to and she gave me purpose in life.  She healed my wounded heart just by her presence and who she is becoming.  She is her own creature.  She is beautiful.  She is compassionate.  She is kind,  She is fierce.  OH! Sure, she can be a pill and then some.  After all, she IS 12 and adolescence is not easy on ANYone involved.

But Jack……we have a different relationship.  Yes.  I take on the Mama role.  Yes, I AM a caretaker, nursemaid, autism whisperer, respite worker,  behaviorist and one on one aid all rolled into one.

But here is something else I am:
STUDENT.

Make no doubt about it.
Jack is my little zen master.
I have a tendency to barrel through life.  I am ever fueled by caffeine buzzing at a high frequency, trying to get 12 hours of work, cleaning, crafting, family time, etc into 8 hours time.  Sleep?  THAT’S for ametuers.  There is STUFF to be done! Let’s go! Multi-task! Chop Chop!! Mach Schnell! GO GO GO!!

And while people are amazed at what I get done…. I lose a lot.  The daily nuances of life.  The tightening of jelly jar lid.   The shutting of cabinets.  The details.

Jack has helped me to amend my ways.
To get me to slow down and be on Jack time.
Jack doesn’t stress about time.
Time is not a Jack construct.  You want to spend four hours standing at the fence taking apart a giant fuzzball to watch the tiny pieces of fuzz blow away in the wind in a random pattern?  Go for it.
All you have to do is breathe.

So.  I stop and I sit with Jack.  I LOOK at what he is looking at.  I try to see it as he does.
And you know, often times I am surprised by what I see……. A shadow.  A line.  A cloud formation.  The sky.
Have any of you really REALLY looked at the sky lately?  AND took it in with awe and innocence?
I highly recommend it.
You could argue that Jack has the luxury of this because of his “situation”– the brain damage,  the autism, the TSC.
And you would be correct.
But you would also be wrong.
Because Jack does too have a choice.
And Jack embraces that beauty.
Jack finds that joy.
Jack has mastered the art of  effortless being.

In the Tao of Pooh, while I run around being a bit of Rabbit (too busy, too thinking) and Clay represents Owl (knowledge is all)
Jack is our Pooh.
He is.
Rather, he IS.

And that is where my love for Jack differs from anyone else I have ever loved.
Jacks love is who he is.
It is his smile given.

It just is.  
He has no hidden agenda, no pretenses.
He is who he is.  And who he is pretty darn easy to love.

(deep breath in aaaaaaaaaaaaaaaaaaaand out)  ❤