And the cow jumped over the moon

Jackson has a very special pillow.
We don’t go on any trip without it.
He doesn’t sit in his chair without it.
Well– truth be told it’s not really the PILLOW it’s a pillow CASE

Wait.

Let me go back about 7 years

Clay ( Jackson’s Daddy) is a MAJOR WWI history buff. Specifically the airplanes. He’s the type of guy that when you’re watching a movie says “Oh, that’s a Blah flippity blah blah but that couldn’t have flown THEN  because they hadn’t started production until…….”
Yeah. He’s THAT guy. So he had a t shirt that had an airplane on it. A WWII P40 to be exact. He LOVED this shirt, but it was wearing thin, and Clay was loathe to part with it because the design was so cool. No problem for a crafty dame like myself, I turned it into a simple t shirt pillow.

We weren’t prepared for Jackson to glom on to this pillow. But he did. It became HIS airplane pillow.

He sits in his chair and pats it.  He looks at the plane on it.  He asks for it.

It goes through a cycle of use, wash, repair, use, wash repair,repair repair.

All too soon the t shirt fabric is almost too thin to BE a pillow.  And the batting inside it matted and lumpy and misshapen from repeated washings.

Time to get creative again

I cut away everything BUT the airplane and salvage what I can.
I stabilize it ( oh how I love you SF101)  and affix it to a custom made pillow case that matches the colors and present it to Jack.

Thankfully it  passed the test. It’s been well over two years and its still going strong.

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But……… I have tried breaking the obsession.  I’ve tried introducing other pillows and pillow cases.  I want a back up.  I want something ELSE to be able to take the place……Just in case…

I’ve tried baseballs

I’ve tried Spongebob

Etc etc ad nauseum

I would place the pillow near him and I would get a resounding

Noooooo–ooooo
Loud and clear

But then. I found it

THE fabric that would TOTALLY captivate him!!

I smugly patted myself on the back, ordered the fabric and

TODAY made the pillow cases.

The fabrics? oh just…….Prints of Jacks all time favorite book Goodnight Moon ! Cows jumping over the moon! A red balloon in the great green room !! Pictures from the book.
Perfect images !!
RIGHT?! How much more perfect could it possibly be?!

You have to know–  there are at least 5 copies of Goodnight, moon! in this house.
2 ALWAYS within his reach.

I put one of the pillow cases on the spare pillow. I walk over to the chair.

He sees it and says, “Goodnight moon. La Luna”

I’m ecstatic
I put the pillow on his lap

He says, “No”

His respite worker says, “Jack , see it’s on your pillow – Goodnight moon on your pillow!”

He pushes it away and begins to make a noise that sounds like a vintage Plymouth trying to start on a cold morning.  His voice rises in pitch as he emphatically states . “Nooooo-oooooo!”  pronounced with several syllables.

I take the pillow away.

I am totally bummed  and I chalk it up to his obsession with the airplane pillow .
(Autism 1 Tina 0) I take pictures of the pillowcases and post on social media because I still think they’re pretty cool. And beautiful.

And that’s what we geek sewers do ☺️

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Now it’s night and   we are putting Jack to bed when I remember –” I gotta go retrieve Jacks pillows for bed — Aw heck. I’m not gonna put the old pillowcases back on. I’ll just leave the Goodnight Moon ones on. He never notices pillowcases on the bed.”

Wrong.

Wrong.

Wrong.

Jack  is getting into bed and all we hear is:

“Daddy. The cow jumping over the moon. I see the circles. The moon. The moon. La Luna. The moon Daddy? I see the circles. The cow jumping over the moon.”

His hands would flap. He would look at his pillow case and smile. He was animated. He was communicating. He was engaged and engaging. He kept looking at us.  He kept looking at his pillowcase.  It  went on and on long after the lights went out.

I made him happy.

I made Jackson very, very happy when I had absolutely no expectation to do so and wasn’t trying to.

I wanted Jackson to want that pillow case for his chair and enjoy it it THERE .   He didn’t.

And in my shortsightedness, that’s where I let it end. But that’s not where JACK let it end.

I wonder how often we allow our expectations to limit our enjoyment of something.

I know for Jack , whose head is resting upon pictures of the cow jumping over the moon, who went to sleep saying “Tina the moon the moon the moon Tina “– He taught me -once again – to live in the moment.  Be open to all the joy that is out there.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Do YOU see the fan?

I took Jack to the grocery store the other day.
We were out of chips.

This was not Jack’s first foray out of the house that day , so he was a wee bit cranky.
And, this was not one of his usual grocery stops– this was a different store.
But what I could I do?
We needed a specific brand of chips.   Autism parents, YOU know what I am talking about.

So we get into the store and start shopping — IMMEDIATELY Jack is enthralled by the huge row of ceiling fans in the store.
He is mesmerized and I am hard pressed to navigate the store with Jack because wherever we go he HAS to see the fan.

We finally make our way to the check out and Jack is beside himself with happiness as he has a perfect view of THE FAN!
And so he starts laughing and shouting
“I see the Faaaaaaaaaaaaaaaaaan!”
He stims a little.
Laughs.
Rocks a little.
Shouts once again: “Faaaaaaaan! I see the Fan!”

I am smiling.  Laughing.  And going about my business of putting the chips on the conveyor belt.
That is when I notice her.

Her.  The woman behind us in line.
She is doing every thing she can NOT to acknowledge us.  She is painstakingly looking away. Down.  Up.  Everywhere except in our vicinity– which is hard , because we are RIGHT NEXT TO HER. It is apparent that this is not what she bargained for when she came in to get her bread and milk.

Now I get that not everyone is comfortable being around special needs children OR adults.
I was not expecting her to become my BFF while we bonded over Jackson shouting FAN in the grocery store.

I realize that Jack and I threw a monkey wrench into her grocery shopping experience.

Which is too bad.
Because she was missing out on a little bit of happiness .

Had she actually peeked over at us she would have saw paroxysms of pure delight.
She could have shared some of that delight if only for a few seconds

Instead she did everything in her power to NOT see it.
Sheer delight and pure happiness was right there next to her and she turned away.

I invite you all to cast off expectations in the moment, to open your eyes to the world outside your comfort zone.
You may just find a bit happiness of your own.

Also?
We WILL smile back you.  I promise.

 

Just my two cents

Different not less.
Puzzle pieces
Autism Speaks
Are you a person with AUTISM or are you autistic?
Do you seek a cure?
Or do you want better understanding?

These are the things that threaten to divide the autistic community.  Where do you stand on the side of these slogans and/or organizations?

For me, the answer is simple.
I stand on the side of Jackson.

He is autistic.  He has autism.  He IS Different, not less.
Would I like for him to be “cured” of autism:
You bet your sweet ass I do.

Listen.
Jack and his network of support- we are waaaaaaaaaaaaay over here on the spectrum.  We are rather isolated.
Putting an iPad in front of Jack is not going to give us instant Carly results.  Schedules, icons, first/then charts, etc etc ad nauseum are part of our routine,YES, but we are not kidding ourselves here.
Jack is SEVERE autism.

SEVERE.
Add to that brain damage from infantile febrile seizures, a seizure disorder, and  Tuberous Scelrosis Complex and yes, we would very much like to take autism out of the equation.

Does that mean that I think ALL children/people with autism (or are autistic) should be “cured”?
Nope.
It means that I pass judgement only on what would be best for MY Jack.
I have worked with children on the spectrum.
I come in contact with special needs children and adults EVERY SINGLE DAY.
I speak for no one but Jack.

I am also not kidding myself.  I know there is not a magic wand out there on the horizon that will change Jack and his behaviors.  Only intense work by us (his family) , his teachers, and therapists.
It is a process.
It is one of extreme hard work and dedication.
It is not for the faint of heart or the lazy.

That being said:
Jack’s autism has shown him to have some endearing traits: his obsession with fuzzballs, his love of shadows and lights, his fascination with all things spinning, and his delight with the moon.

He is an open book with no hidden agenda

But, if I could, would I trade these endearments for Jack to be able to speak clearly, give direct eye contact and learn like a neuro typical?

Yes.
Yes, I would give all that I have and more.
I would love to see WHO Jack is without the obsessions, with complete language, and a mind of his own.

So Autism community:
Please don’t judge me when I say
I want a cure.

You can’t always get what you want

When I first met Jackson, he was non verbal.
Completely.

If he wanted a drink, he would make a noise mimicking sucking a straw.
He and Clay would communicate with clicks.

There was laughter.  Smiles.  Noises,  But no real verbal communication

One day at a picnic, he busted out a “Hi, Jelena” to his respite worker.

We celebrated.
It was awesome.
And with prompts he would repeat that greeting with someone else’s name.

It was a breakthrough.  And I would be lying if I said that it was a piece of cake from then on.
There was echolalia that we have been able to direct to real life situations and use.
There has been nonsensical babble that we have been able to suss out a few words and BAM another breakthrough.
There has been times when Jackson repeats a word over and over  that we cannot make out….and then when we DO figure it out- he grins and laughs and VOILA!! another addition to the vocabulary.
And when he makes that connection? Boy do we honor it!
Chips please?!
We respond with “Yes chips! I get chips.”
Or “I want some water” (to play with , not drink!) “Yes Jackson, I get you some water.”

Jackson spoke and we honored it.  Jackson requested and we JUMPED!
Jackson made his desires known, we leapt at the chance to let him know:
COMMUNICATION WAS WORKING!

One beautiful night, Jackson grabbed Clay by the shirt sleeve and brought him to the window.
He said, “Daddy, I see the moon.”

Moments like that you don’t soon forget and are incredibly awesome.
It’s all wonderful, isn’t it?

Heres where I become Debbie Downer.
Nope.  It’s NOT all good.

Because at some point you have to introduce the word
NO.

And when you do…….it’s heartbreaking.

Suddenly the world becomes a much sadder place.

You cannot ONLY eat chips all day.
You cannot always play with water cups on the counter.
You cannot always get what you want.

With some of these requests, we have instructed Jack to be more pro-active
J: “I getta fan on!”
Us: “Jackson turns the fan on”

J:”ELMO BALLOON!”
Us: “Jackson get the Elmo Balloon”

J:”Spinning, please!”
Us:”Jackson gets a spinning”

And so on and so forth.
Sometimes Jackson gets that ok…..I’ll get my stuff.  Although, he would much rather sit in his chair (throne) and be waited on.
And then other times we have to work hard to get him involved– A prime example being his love of chips.  He will want chips and so we draw it out so that he does not just become a chip eating machine.
It goes like this:
Jackson : “Chips please!”
Us: “Yes, Jackson, I get you chips!  Where’s your bowl?”
Jackson: “Yes, chips!”
Us:” Let’s finder the bowl”
Jackson: “take it to the counter!!”
Us: “Finder the bowl, take it to the counter!”
Jackson: “whine whine whine”
Us: “Good job, Jackson!! Take your bowl to the counter!”
Jackson: “Yes chips!”

and so it goes…..on and on and on.

Communication is hard work.

And while you can’t always get what you want,
Jackson finds that you also get what you need:
Boundaries with love.