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…….
readImage

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.

Other Choices

Other Choices

I’ve been busy.
Really, really, busy. I have been, as the kids today would say: ALL THE BUSY.

Looking back it’s been two and a half months since I last blogged. It’s not for lack of things to say, but lack of time that kept me away.

I work.  I am a mother.  I am a wife.  I am a “maniacal crafter”  and I sell my things (shameless plug).
I have friends I like to visit with. I have obligations.  I have places to go and people to see.
I have the occasional headache or ailment.  I have appointments.  I have stress.  I have housework.
You get the idea.
What I am trying to say is:  Life is full.

And so, the other day I was  scrolling through Facebook I saw a meme that left me laughing.  It left me laughing hard and gave me the resolve to dust off the blog .  The meme was from the good people over at Autism Hippie.  I immediately shared it over at Jack’s page.


It was this little gem:

Brilliant!

Brilliant!

Look at that.  No overly sentimental photo.  No cutesy pie pic. No vintage graphic.
Just those amazing words.

You see, special needs parents get this a lot.
HOW do you do it!?!

Do what?
Love our kids? Do what is necessary to see that they are healthy and happy? Make them a priority?
BE A LOVING AND CARING PERSON?

Make no mistake….I am aware that other parents get this.  A friend of mine has a set of triplets.  HE can tell you stories as well!

But I digress.  I am Jackson’s mama. I am Darrah’s mama. That’s some serious committment right there.
What other choice DO I have? When the going gets rough I cannot just up and leave. It’s not like I could pack up and move cross-country on a whim to escape it all.  It’s not like I could move to an ashram to navel gaze and find myself.
No.  That’s just silly.  You just pull on your  big girl panties and greet the day with love, joy, compassion, and a huge cup of coffee. Day after day after day.
You just DO.
There is no other option.
And since that is the case, I say — enjoy the hell out of it.
Enjoy the chaos, the clutter, the messy, and the struggle.
It’s what we are here for.  It’s what life is all about– putting yourself out there and greeting the day with courage no matter what.

You know who taught me that?
Jackson.
Make no mistake, life is not easy for the boy.  He’s got this whole brain tumors/autism/seizure thing going on and yet he gets up day after day with a smile on his face ready to greet the day.
He struggles, he fails.
He struggles, he succeeds.
He goes on no matter what, with joy in his heart.

How does he do it?
I am not sure he is aware that there is any other option.
And neither am I.
Jack and I?
We’re on the same page.

On the same page and on the same pillow, too

On the same page and on the same pillow, too

If you’ve met one autistic kid……..

I was on a mission the other day.
The mission was to stock up on Jackson’s favorite spinnings.  Spinnings which are not to be confused with BIG spinnings or pinwheels.
I trekked two towns over to the SAK’S FIFTH AVENUE of Dollar Stores.  Truthfully.  This is the best stocked, most awesome Dollar store EVER.  Or not.  It could just be that I need to get out more.
ANYway.
They did indeed have the multi-colored spinnings that I needed.  For a buck (DUH!).  So I stocked up.

While standing in line, the cashier mentioned that one of the five I was purchasing had squared edges, rather than round.  Would that be OK?
I said, “Sure! No problem.”
She replied,  “I thought if you were placing them in your garden, you’d want them all the same.”
“No,” I said “My son is autistic and he loves to play with them.”

Two lines over a man whipped his head over to my direction at the word “autistic”.
He fairly bounded over to me and said “Hey! Hey! You’re son is autistic!? I bet he LOVES to play minecraft!”

I stared at him.
“No.  No he doesn’t”

He was undaunted, “Really? I heard that autistic kids LOVE minecraft. That’s the video game with the squares.  Huh.  He doesn’t like minecraft.”

And so he stared at me.
And I stared back.

He walked away.

Listen.  If you know me in real life, then you know that I am a fairly friendly and gregarious person.  I can chit chat with the best of them.  But at that moment I was annoyed and irritated.

First– I was annoyed with myself.  Did I REALLY need to call Jackson out like that? Couldn’t I have just as easily have said, “No, they’re not for my garden, but for my kid”?  Yes. I could have.

Second- I was annoyed with that man.  At the sound of the word “autistic” he had to run over and give me his two cents on it.  He had to let me know that HE knew something about autism.  Did he think I would find it clever? As if he produced a rabbit out of his hat?
“Why YES, Mr. Random Guy! How did you EVER know?! Aren’t you the smart one!” (and I would bat my eyes and smile at just how much this person KNEW about the autisms!!)

This encounter begs the question though:  What do YOU know about AUTISM?

If you read my blog or follows Jack’s Facebook page,  then you are familiar with OUR version of autism.
If you are the parent of an autistic child (or a child with autism), then you are familiar with YOUR version.
And sometimes? Traits and behaviors overlap.  Food aversions, sleep patterns, stimms, etc.
And what we moms, dads, caregivers, etc GET is that:
It’s different for each and every one.
Every day.
Every time.

And so the ones that DO get it? They’re the ones that hear the word “autism” in the Dollar Store and give you a knowing smile.  They’re the ones that pass you in the mall when your child is making a barking noise for the sheer joy of the echo and they nod and smile as they walk by you.  They’re the ones that see a melt down and don’t automatically assume a child is a spoiled brat who needs a good spanking.

And the next time someone asks me why I’m buying a dozen spinnings, or several bags of fuzzballs, or why my grocery cart is filled to the top with bags of a specific  type and brand of chip, I will just say:

“Because my son Jackson loves them.”

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.

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.

 

Falling for the boy

Well crap.

Jackson took a fall and broke a toe.

We thought he was running for a split second.  Until we realized that he was falling.  And then neither of us could get to him in time.  It was that super slow motion thing that makes you realize how quickly things can change.

Pavement 1, Jackson 0.

He’s got some lovely road rash to show for it too.

But I have to say:
Our little man is a trooper to be sure.  He doesn’t let much get him down.
My husband tells me that right after his brain surgery at 5 years of age, he tried to get up and indicated he wanted home.

Even as we assisted Jack in walking right after the fall he would look at us plaintively and say: Fix it? Tina! Fix it.

*heart broken*
Sorry, buddy, Tina can’t fix it.

But here we are five days past.  We’ve been to a doctor, we’ve been xrayed, and we are on our way to recovery.

Jack is once again, teaching me a good lesson.
He is same as he ever was.
And while I have had to give up a some (ok- ALOT) of sewing time to help him.
And I am not getting as much housework done as I could be on this break……

I am spending more time just hanging with the boy.
Talking.
Communicating.
Learning new things. (not to mention, fetching and waiting on Jack ‘s every whim and will.  🙂   )

And who cares if my sewing room remains in disarray?
Who cares if my floor is a little “crunchy”?
Who cares if that stack of sewing projects sits for a bit?
This is the here.
This is the now.
And sometimes you need a reminder that you need to put your feet up
(especially the one with the broken toe)
and be at one with the world around you.

Thank you Zen Master Jackson.

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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.

photoJack3

Fuck you, Autism.

This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately.  What to write, oh what to write…..?
I would start things….but not finish.  I would have great ideas, but no way to wrap it up neatly.
This was bugging me.

Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album.  There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager.  It was delightful.

Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.

But this picture was different.  It showed a very composed, calm child with a look of peace in his face.  I was moved by the colors, the composition, and the expression on his face.

It was THIS picture:
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Just look at him.
LOOK.
What do YOU see?

I see a blank canvas upon which a masterpiece could be painted.  A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.

Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait.  is that ECRU?  I thought it would be more beige.”
No.
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.

And for that I say:
FUCK YOU AUTISM.  Fuck you and the horse you rode in on.

Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!

Fuck you and all that you stand for.

So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.

Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.

Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe.  Mainstream.
Jackson is not  paint by numbers .  He defies realism and a conventional palette.

He is cubism.  He is a Dali. He is a Pollock.   He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful.  He is art as a verb.

He is the Venus de Milo– still beautiful if not what the artist originally intended.

And listen, I may not know much about art.
But I know what I like.

And Jack is– and will always be — a thing of beauty to me.

 

So here’s to us– the  curators of outsider art– or autism parents.
We see the world differently.
We have to.

Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.

 

 

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