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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Gratitude: A way of Life

I get that people are well-meaning.
I do.
They want to commiserate, to show you they understand, to let you know they “get it“.

But the sad truth of the matter is: they really don’t.
9 days ago Jackson had his first grand mal seizure in over three years.

It was a- full-blown – body- shaking -drooling -get -the- rescue- meds seizure.
And then less than 12 hours later? It happened again.
In his sleep.

Thankfully, I sleep with Jackson so it didn’t go by unnoticed and we were able to follow SOP.

I related this to a coworker…..and how yeah….it sucks and I am not getting much sleep.
And Jack is still not walking even though his leg is healed and……
She TOTALLY gets it cause her 7-year-old wets the bed.
And there is sooooo much laundry to do “It’s relentless” she says.

Hmmmmmmmm fear of SUDEP  versus your neurotypical kid wetting the bed…….
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And I went off and pondered.
There are many of you out there that DO get it– fellow TSC moms, special needs parents, and those in our close inner circle that see what it takes to raise Jack.

And yet……
WE have it easy.

Recently the world lost a beautiful soul by the name of Kreed.
Kreed was medically complicated beyond normal standards, but a shining star with two moms whose strength and devotion was beyond compare.
His story and efforts to raise funds to bring him home can be found here on his FaceBook page.  I encourage you to visit if you haven’t before. Go back and read over his life and his struggle. Get to know one of the most joyous and courageous souls you’ll ever meet.

I’ve been at a loss to truly put my emotions into words the last few days.
I look around at the world and I want to scream:  quit fretting about petty bullshit!
Who cares if you can’t find your LuLaRoe unicorn leggings?
Who cares if your coffee at Starbucks didn’t get the full shot of vanilla?
Who gives a good goddamn that ( fill in the blank with whatever you are worrying about at this moment that is not life threatening or has the potential to be)?

I have friends in the TSC community who’s children are in and out of ERs.  Seizures.  A cold that turns into pneumonia and threatens the life of the child and months of progress lost.
I have friends who have to deal with their children’s feeding tubes, complicated medical procedures, and fight the system trying to get services. And yet we as parents and caregivers and sisters and brothers get up every single day and do it all over again.

And so to you that do NOT deal with this?
I say:

Practice an attitude of gratitude.
Realize that — you know what?
Things could be a whole lot worse.
Maybe be grateful that you CAN spontaneously go to Starbucks.
Be grateful that your child who is being too loud– can TALK.
Be grateful.

I have this standard reply I give people when they apologize for something silly:
Like the cashier in the grocery store who apologizes for a wait in line, or when a waiter apologizes for being out of a food item

“if that is the worst thing that happens to me today, then life is pretty damn good”

Be grateful today.
Find your blessings
Because I guarantee you
You have a whole lot of them.

Let your creed be LIVE.
and LIVE JOYFULLY.
Do it for Kreed. Do it for Jack.

Aaaaaaaaand we’re back!

I’ve heard it said that “blogs are crap, and just vanish when the power goes out”.
While this may be true when it comes to blogs about Traci Lords porn, fancy shoes, or the fashion choices of folks in Humboldt County California, I can personally attest to the power of “mommy blogs” and the online support community of special needs parents.

My online voice has been quieted while my family has been going through some legal court stuff that was put in motion to ensure the continuous care of Jackson should something happen to my husband.

Let me get this out there:
I blog for Jackson.  For myself.  And for those that choose to read it and carry away a grain of truth or a modicum of hope.   I believe that I have a unique voice that rings true to some.
I am a PollyAnna purist who can find the light in any darkness.
There has never been any adversity or battle that I could not overcome.
Ever.
And there have been plenty.
What has kept me afloat in the darkest of times has been the mantra:
THIS IS FINITE

Yep all good things must come to an end.  And conversely– so must the bad.

Our legal struggles are not over.

But I am choosing to get back into the habit of tapping on the keyboard and getting out my brand of blogging.
To document the life of a child with a rare genetic disease, a seizure disorder, severe autism, and a glowing soul.  To document the lessons I am taught.  To remind others in the same position that there is joy to be found.  There is beauty in the struggle.
There are monumental life lessons that are there for the taking.

And I am back– with a vengeance– to share them with you.

Stay tuned.
There is so much more to come.

A Holiday Message

I have been meaning to write a new entry– really I have.
And then for some odd reason THIS ENTRY of my blog has been getting renewed attention.

It started as a FaceBook note on my private page…..then morphed into a blog entry.
It speaks of routine.  It speaks of family.  It speaks of consistency and sacrifice.
More importantly, it speaks of uncompromising love.

And so, it led me to reflect on the past  two and a half years of writing about my life with Jack.

Through Jack’s page on FaceBook I have met many a righteous parent, child, grandparent, activist and TSC warrior.
We have shared love, support, empathy, understanding, and anecdotes.
We have rejoiced together over our children’s triumphs, and commiserated over the setbacks.

And so to all of you parents out there this Christmas…..
be you the parent of a special needs child , or not
be you the birth parent, or the step parent, or the parent of the heart
I say to you:

Thank you.
Happy Holidays
Take a deep breath
Let it out slow
Smile.

You’re doing great and we’ll get through this together.

The Holidays are rife with warmth and love, the New Year brings the promise of renewed energy.

I thank you all for your love and support.

with love,
T and Captain Jackstastic

Dream a little dream

As far back as I can remember I have been a very vivid dreamer.  I can still remember dreams that I had as a child in exquisite detail and feeling.
Some dreams leave me exhausted; others, exhilarated.
In my dream state problems get worked through, stress gets relieved, events get relived, and sometimes desires get fulfilled.

I recently had a dream about I child I had worked with and whose mother founded a local autism support group.

Caden is a ridiculously beautiful boy whose dx includes Fragile X Syndrome and autism.  (You can read more about him HERE as his mom has also guest blogged for me!)

In my dream a handsome young bespectacled man in a pinstripe Oxford clothe shirt approached me and asked me if I had ever worked in the PALS program.  ( an early intervention program here in Humboldt County.)  I replied that I did and he informed me that he was Caden, the little boy who used to sit and endlessly flip through pages of books.

At once the knowledge of how far this child had come and who he was now was like a huge weight lifted off my shoulders and the world in general.  In my dream I began to weep.  Tears flooded my face and my body was wracked with sobbing as I became overwhelmed with emotion.

From behind me I heard Clay and Jackson (also grown) laughing at me in a good-natured manner because I always get “so emotional”

I awoke from this dream with a renewed sense of passion and hope.  These children– ANY special needs child– need the constant hope of potential– the solid foundation of belief.  Our children need to be seen as unearthed treasures.  We need to forage and mine, dig and discover the beauty of who they are in this moment, as well as who they can grow to become.

It sounds so simple and chock full of common sense, doesn’t it?
But it’s not.
Routine can wear us down.
Setbacks can wear us down.
The sheer weight of what is needed to be there 100% day after day can wear us down.

So I invite you all to take a break.  Take a nap.
Regroup, recharge and rediscover that hope.
Focus on the beauty of the moment– the unique gifts and talents YOUR child possesses.

Dream of little Dream of beautiful future.

A little Slice of Heaven……

Routine.
It’s what keeps our sanity.  Our family functions like a well oiled machine.
We each have our “assigned” tasks and chores and we rarely deviate from the path.

Except today.
Today, I decided to cook dinner and to do that, I would need to go to the grocery store.
With Jack.

While this may seem pretty routine for the average person.  It’s not really for ME.
I am beyond lucky that not only does Clay do all the grocery shopping, he also does all the cooking.
He can successfully navigate three stores every Saturday with both Jackson and Darrah and lay a bounty of well purchased goods on the counter upon his return home.  He can tell you what sales will hit when and where to get the best deals.  He has Darrah to help with Jack.  And it’s a perfect arrangement.
Especially for me!
But, hey!  It’s spring break.  And I am feeling quite domestic.  So what could POSSIBLY go wrong with me breaking Jack’s routine and bundling him into the car right after breakfast for a trip to Winco!?

Turns out– absolutely NOTHING.

I will grant you that it certainly helped that it was early morning and there was not a lot of shoppers.
I will also grant you that was in a good mood given that THIS was the only task I assigned myself with nowhere to go but home when I was done.

Jackson leads the way

Jackson leads the way

We walked the aisles.  We chatted away.  We sang Jackson’s “Annu Annu” song.
Occasionally something would catch his attention and he would stop to ponder it.
Some people stared. Alot of people smiled.

 

Jackson ponders the wide variety of canned beans offered at Winco.

Jackson ponders the wide variety of canned beans offered at Winco.

 

Jackson places the Tuna Helper box he had previously thrown on the floor.  I feel ya', buddy.  That stuff is nasty.

Jackson places the Tuna Helper box he had previously thrown on the floor. I feel ya’, buddy. That stuff is nasty.

We took our time.  We had fun.  I let go of any expectations of what could possibly happen and I just let myself be there with Jack.
And so I got to thinking…..ALL the stress we put on ROUTINE in the autism community? Maybe we need to shake that up a little now and then.  Maybe we need to trust our kids that yeah– they can handle it-if we let OURSELVES handle it, too.
I can tell you that todays break from routine was a little slice of heaven.  And I can’t wait to do it again.

Our checker?  But of course!!  Jackson spelled out the letters for him: J A C K S O N!

Our checker? But of course!! Jackson spelled out the letters for him:
J A C K S O N!

We had to stop and check out the lights on the way out.

We had to stop and check out the lights on the way out.

An open letter……..

As alot of you know…..we have just returned from a two week vacation where we traveled to Idaho and Utah to visit family.  It was lovely.   Jackson traveled very well. (with ALOT of pre-planning on our part!)

One of the highlights was visiting the Hill Aerospace MuseumImage

THIS, is an open letter to the woman that openly stopped and stared at Jackson at one point in our visit there.

Hello.
I understand that you might have been a little put off or uncomfortable with what you witnessed   at the Hill Air Force Air Museum.
Let me break it down for you so that you can put it in perspective.
My son , Jack, is autistic.
Jack loves, and I mean LOVES, helicopters and airplanes.  They are endlessly fascinating to him on many levels.  So that day he had reached Nirvana, Vallhalla, and Heaven all rolled into one.  It was bonus points that the hangar was cool and not brightly lit.  That echo?  A big draw, too!

And that cool ( to the touch) concrete floor was the coup de gras on that hot summer day.
He laid down on the floor so that he could see the propellers from his favorite angle:
LOOKING UP.

And that is why he yelled (at the top of his lungs) the word FAN.
What he did next was a sensory thing.  The floor was cool and slick and perfect to push oneself across on one’s back.  If YOU were a severely autistic child, YOU probably would have done the same thing.
Really.
You would have.
And it would have felt AWESOME!
Jackson, at that moment, was deliriously happy.

Now, my 13 year old self really wanted to say to you in a snippy voice:
“take a picture, it’ll last longer”

The grown woman/mother in me really would have liked you to have at least try to catch my eye.  Perhaps smile.  Maybe raise an eyebrow.  Even ask, “Is he ok?”

But no.
You openly stared.
You stood there.  You frowned.
You stared.

I thought about offering up the phrase “He’s autistic” as a way of explanation.
But decided against it.

You were closed.
You were not open to any information as far as I could tell.
You turned smartly on your heel and walked away.
My guess is that when you went home Jack and I became a dinner table story.  A cautionary tale- perhaps a narration of bad parenting.

And you know what?  It’s OK.  It really is.
Because Jack and I know the truth– and we had a really great time.

Kindness does exist

I had a pleasant surprise Friday afternoon

Between the horrific incidents in India, Sandy Hook, and Steubenville I will admit to feeling less than stellar about humanity as of late.

So, it’s Friday after noon.  Ten minutes before dismissal and my first grade class is participating in TIDY FRIDAY:
Getting the classroom tidy (pencils sharpened, books straightened, etc) before the weekend.
I look out the window and I see Jack waiting in the yard of his classroom.
I also see parents lining up at the gate waiting for the release of their little cherubs.
Then I see a boy– he looks to be about 12.
He is on a bike.
He is waiting too– perhaps for a sibling?
And I see  him wave.
To Jack.
Jack responds with a little stimming dance. (hands flapping, an excited little crouch)
Another wave.
Another dance.
It appears that the boy is also speaking to Jack.

And so our class is dismissed and I go to pick up Jack.  As always, he is happy to see me and we go….
But not before I steer Jack off the path to this boy.
Jack is having NONE of that….he does not like deviation from routine so he protests in a way that only a non verbal autistic child can.

LOUDLY.  🙂

Still, I approach this young man and say
“I saw that you were waving to my son.”
He looks panic struck for a moment.
He says: “Yes.  Is that OK?”
I touch him on the shoulder and say:
“It is VERY OK.  And I want to thank you for your kindness”
He looks relieved
He says, “oh.  OK! no problem. He was just standing there.  He looked happy”
I tell him how much that kindness means to me and we turn to go.
He says “Ma’am? What’s his name?”
I turn: “Jackson”
He waves again, “Bye Jackson!”

Now this may not be THAT big of a deal.  But it gave me hope.
It made me feel good.
There’s a kid that took a moment to think outside himself– at an age where that is not the norm, no matter HOW good they are raised– to bring a smile to someone else.
Someone way outside the “norm”…..

Moments like that restore my faith in humanity.
I hope you find those small moments as well.  🙂