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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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.”

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.

 

Out of the closet…….

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an 11 year old “sparking up” , let me assure it is nothing like that.
Jackson takes a dropperfull  of a non alcohol based tincture in the morning and a product called Rick Simpson oil (also known as “Phoenix tears”) in the evening.
Neither of these products have a psychotropic effect.
Let me repeat that:
They do NOT have a psychotropic effect.  That is to say: Jackson is NOT getting “stoned”.
There is no “head change”.

These are carefully crafted MEDICINES that have proved radical in Jackson’s treatment for his seizures, his TSC, and his joint pain.

The process is above board and on the up and up.
The dispensary where we choose to purchase Jack’s medicine is safe, friendly and……INCREDIBLY KNOWLEDGABLE about their products.

We live in Humboldt County which is widely regarded as the stoner capital/pot growing mecca of the United States.   However, we are not alone in the medical marijuana movement.

Check out what is happening in Colorado- with the Realm of Caring – and their specially crafted strain known as “Charlotte’s Web” that is showing amazing progress in the treatment of seizures.

Georgia is next.
Fingers crossed.
Check out what is happening there through Connor and his mommy

It’s happening, people.
It’s slowly happening, but it IS happening, and lives are being saved and being made BETTER with the use of medical marijuana.
I’ve seen it.
I’ve felt it.
And I stand solidly behind those that are fighting for the legalization of medical use of the cannabis plant.

Still with me?
Does it change the way you see Captain Jacktastic?
Are you appalled?  Surprised?

We are still who we are.
And we continue to fight the good fight.

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.

You DON’T know Jack

SO here we are — It’s May and that means Tuberous Sclerosis Awareness Month…..

I  could start in on cold hard facts about seizures, tumors, medication et al, ad nauseum, but I thought it would be better to tell you about the little boy– some things about who he is, rather than what he has.

 

  • Jack has an airplane pillow that he loves.  It is made out of an old t-shirt his dad bought him that had a P40 with sharks mouth on it.  When the t-shirt became too small, I turned it into a pillow just on a whim.  Had I known it was going to be such a big hit, I would have crafted it better.  No matter.  It got worn down and loved on and became threadbare.  So the picture got cut out, reinforced and sewn onto ANOTHER t shirt pillow.  And it is still a much beloved and cherished comfort item.  When sick, when tired, when in need of comfort, Jackson will ask “Airplane pillow?
  • Jack has, over the last year, developed a sense of humor.  While he will often shout -seemingly out of nowhere “FUNNY FUNNY”, he has learned how to “trick us” on purpose.  He will show us the base of a stacking toy– a circle– and say “It’s an octagon!” to which we will reply “That’s not an octagon, that is a CIRCLE!!” And that just delights him and tickles him to no end.  He will do this with other shapes and items for the sheer joy of being corrected.
  • Jack is very enamored of his sister Darrah.  He will stand at the end of the hallway (where we have placed a gate) and yell to her room “Darrah!? Ner are youuuuuuooou?”  He loves to sit on her bed with her while she plays video games or listens to music. When she has friends over, he will do the same thing and all of Darrah’s friends treat him with kindness and respect.  He has learned the word “sister” and hugs and kisses her every night before bed.
  • Jack has made a lovely friendship with my ex husband.  While it seems rather unusual to people, my ex (Darrah’s father) and I have an incredibly great relationship.  S0 much so that Clay and I  encouraged him to move in to the mother in law unit on our property.  He delights in blowing bubbles over the fence for Jack and Jack always says hello to him -WITHOUT prompting– when he comes into our home.  They are both fairly solitary creatures and I believe that they recognize that in each other.
  • Jack tells me about his day when I put him to sleep at night.  Over the sound of the sleep machine, his hand in mine, I get to hear about rectangles, spinnings, straws, woo-hoo, and other mumblings.  Then they taper off and I get to hear a soft snore not unlike the purring of a cat.  Jack lives and plays hard.  It’s only natural that he sleeps pretty hard, too.
  • Things that amuse and delight Jack : Straws, circles, Crocs, baseball, fans, rectangles, Spongebob, Elmo, a book about Cats, Legos, Daddy’s HAT on his HEAD!, fuzzballs in the breeze, balloons, the moon, throwing things, warm breezes, the bounce-poline, and watching children play.  This list may be amended at any given time.
  • Each of us in our immediate family is “authorized” by Jack for a certain story.  While each of us is certainly capable of reading to Jack, we are each associated with a book and no one else can do it “right”.  For me, GOOD NIGHT MOON.  Darrah gets the CAT BOOK.  And Daddy reads the Spongebob series.
  • Jack is a force of nature. There is a purpose about the way he walks.  He is never bored. He is always aware and watching

This is but a sliver of who Jack is.
There is also more courage and joy  in him than you could possibly imagine.

Every day is journey.  Every day is discovery.

And every day holds the possibility of seizures.
And every day he has over 30 tumors in his brain.
And every day he is severely autistic.

EVERYDAY is Tuberous Sclerosis Awareness Day in our home.
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For your consideration…..

I am most honored to be a guest blogger over at
FIND MY EYES.  This is a stay at home dad with an autistic son named Jack.
Hmmmmmm THAT sounds familiar!

This month he focused on AUTISM AWARENESS month with a bunch of different perspectives.

I highly suggest following this fabulous writer and his journey!
In the mean time, not only check out MY perspective, but many other guest bloggers as well.
Theres a light of light shinnging over there!

Working my way to unemployment

EDITORS NOTE:
I write this blog entry with full permission from my students mom.  Who is a real peach .  AND a friend.  🙂
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When I became involved in Jack’s life I had a most amazing epiphany:
I had an aptitude for working with special needs.
I had patience.
My ego didn’t get tangled up in the battles.
I took delight in the step by step process.
I had a gut reaction and a clear visions as to what needed to be done and how to do it.

I went from working an office job to working in an early intervention program called PALS.

Oh how I loved it! Everyday I worked with these beautiful children who saw the world oh so differently. Who had quirks, and charms, and eccentricities.  Who were brave, funny, and sometimes baffled.
I met the most amazing teachers and parents.

There was one particular child who was ready to transition. He had aged out of our program and SHOULD be in a regular kindergarten class.

Could he do it?
Could he handle it?

Yes.  Most definitely.  PROVIDING he had a one on one aid.

I felt a special affinity for this child.

Why?  Who knows?
Sometimes you just “click” with someone.  He is smart,  funny, charming and some days:
TOTALLY in a world that has nothing to do with this one.  🙂
I was able to identify triggers, learn how to calm him, soothe, wait him out, and tether him back to here and now.
And so, I chose to leave the  PALS program  and follow this child to the NT classroom environment.

This would mean a significant decrease in pay.  AND forging the way since this particular school did not really “do” one on one aids.

But I believed in this student.  I BELIEVE in this process.
And so I went.
I was there to decompress, to run interference,  to translate,  to guide.  I went in armed with icons, a small white board, daily sticker charts, and other tools of the trade.
I’d love to tell you it was smooth sailing from the start, but I cannot.
I CAN tell you that there were days that I was calmly sitting outside the classroom with my student as he had a meltdown………that went on and on.
There were days that I would get “compliance” by hand over hand for certain tasks.
There were days we BOTH went home exhausted.
And yet there were days when he drew a recognizable picture and CLEARLY wrote the word for it.
There were days that he addressed his table mates by their name and not “girl” or “boy”.
There were days that something inside clicked and the learning came fast and furious.
About three-quarters of the way into the school year, the days of being “on” far outweighed the “off” and he blossomed.

Now “we” are in first grade.  Academically its tougher.  And there have been some hard days….
But it is becoming VERY clear to me–

I am working towards unemployment.
I see so much progress.  I see so much confidence in my little guy.

SO what’s the “point” of this particular blog post?

NEVER, EVER give up hope.
This mom — that I count among the many SUPER MOMS I have met working in a special needs environment– has been tireless  in advocating for her son.  She has had many a sleepless night wondering  what the next day will bring.  She has worried  and prayed.  She has researched.  She has listened.  She has hoped and she has wept tears of joy.

There was a day in his pre school environment that I held this child off and on for well over an hour, trying to move pass a meltdown:  compressions, breathing, changing environment, etc etc etc…..just getting calm when SOMETHING would trigger him again and it cycled over and over.
His vocabulary wasn’t that advanced.  His communications skills not the best and now…………

He and I sit  at “second snack” (a decompression time after recess) He takes deep breaths by reaching towards the sky.  We go over his sticker chart/schedule discussing what will come next in his day and we discuss  “Gold card” behavior.
He goes back to class and writes and chats with his classmates.  When things become too much for him he will take breathes on his own, or he will request to sit with me at a table in the corner where it is quieter.
Sure,  he may obsess about which pencil he needs to write with.  Sure, he zones out a bit when there is too much going on.  And yes…..there is stimming in the classroom.
But you know what?
He’s on his way.

So when you think that there is no way you can get past this current phase, I urge you to remember….

This too shall pass.  Progress awaits on the horizon.

Not JUST for my student, but for ALL of us.

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Are you for real?

I recently saw an article ON FaceBook ABOUT FaceBook and how FaceBook  may distort our image of others and even ourselves.
“See?! Everything is lovely! My kids are beautiful!  My Instagram pics of my food are awesome! I do AMAZING , FABulous things!”

C’mon.  We ALL do it.
I mean, I am a pretty positive upbeat person, so I try not to be negative on FB.  Or this blog.  But I would like to think that I am fairly realistic.

But I thought about it.
And to be honest–
I, too, am guilty of gilding the lily.
I am guilty of the not telling the truth by omission.
I let all of you see here  (and on the Captain Jacktastic Facebook page) just how wonderful it is to live with Jack and learn from him
And while all of that IS true…

It also ain’t easy.

I don’t tell you about the tantrums.
I don’t speak of the head banging when he is not happy about not getting his way.
I dare not whisper about the hardship when he doesn’t want to eat  (he stamps his feet so quickly I refer to it as Flamenco Dancing!)
I leave out having to do things in a specific order so as not to antagonize.  I omit the time it takes to care for Jack.
I don’t want to bitch and moan about how EVERYTHING we do is about teaching.
I don’t want to discuss that Clay and I get very little grownup time together. (three hours! EVERY Thursday night! Good Lord willin’ and the respite worker don’t cancel!)
Then there is keeping up on all meds, tracking seizures when they happen,scheduling and keeping appointments at a clinic and hospital five hours away, researching new things about TSC, making sure Darrah feels loved and not pushed aside, work, regular family stuff like bills and shopping, oh and house cleaning takes on an extra added dimension when you live with Jack as toys get thrown EVERYWHERE, and extra clothes washing when there is a pee thru and making sure that there are enough chips in the house, and …………..

 

the list could go on.

and on.

But what good would that do?
Even is you are not a special needs parent., you know its rough- at least  intellectually.
I am not looking for pity or sympathy.
I am here to demystify.  I am here to educate. I am here to advocate.
AND
most importantly

I am here to see the silver lining–
to see the world through Jack’s eyes.
to be unafraid– like Jack
to be brave– like Jack
to put a different spin on this “lifestyle”.

I share the joy, the positive, the light, the beautiful moments, and the GOOD
because
in the end?
THAT is what truly matters…..
not what I don’t get
or don’t have
or what I may be missing.

Because from where I am standing?
THAT’S what makes my life worth living

and I’ll share that anywhere.

Fickle Fickle Fickle.

Jack loves his videos.

Oh, wait….this is 2013 and all.
Jack loves his DVDs.
There is Bear in the Big Blue House.  Various Elmo’s.  Blues Clues.  Wienie and Oswald.  And two very special DVDS: one called Straight Up about helicopters and the other is a DVD of airplanes doing water landings and take offs at a Canadian airport.

The way Jack usually requests a specific disc is to say “Wanna watch Elmo!? OK!! I getta Elmo”

So you go into his room.  Turn on the tv and the DVD player.  The DVD player takes a little while to warm up.  Then you pop out the LAST DVD.  Usually at this time Jack is settling down on the couch and shouting “Ok! I getta Elmo! YES YES ELMO!”.   And to keep him calm you say that back to him so that he knows, yes, indeed, you ARE going to produce Elmo at any moment.  So you get the right disc in, fast forward through the five minutes of promos and get it started.  oh, YES! It MUST be watched from the very beginning.


Except…..as of late….that is NOT the way it has been going.
Jack has been, shall we say? FICKLE.

He shouts “Bear! wanna watch BEAR!!”
And I go into the room, and say, “Yes, Bear, Tina gets Bear”
And go through the motions and get it all cued up, hit play, go to leave the room and…….
“Elmo?! YES ELMO!OK!!  I getta ELMO!”

oh.
OK….so back in I go…..”Yes, Elmo”
As I am shuffling discs….
“Blue? Yes YES Blue OK! OK! OK!! I getta Blue”

At this point I am halfway between discs and turn to Jack:
” Want to watch Blue? or Elmo?”
Jack:  “Elmo”
“Elmo or Blue”?
(because sometimes he will just repeat the last one named)
Jack: “Elmo”

So once again……back to it.
I leave the room, sit back down at the computer and I hear:
“HELICOPTER! TIIIIIIIIIIIIIIIIIIIINA!! HELICOPTER”

*head desk*

And so it goes…..
But can I really get too mad about this?
Consider:
A few years ago Jack did not have the language or cognitive ability to make these requests.
Now? He can talk.  He makes decisions about what he wants to watch.
He has learned the power of language!!
I guess I can’t complain too much– just another day of living in the Jack lane.  😉