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.”

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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.

A beautiful face

I have lots to write about.
I have oodles of things that I want to say.

I have gripes, complaints, information, and news to disseminate.

But not right now.

RIGHT NOW I just want you to see how happy Jack was yesterday.
These shots were post temper tantrum (he wanted “SHOES ONE” and “CAR YES!” a little too early)

But once all that screaming, anger, frustration and vitriol passed…..
Here he was.  In a patch of sunshine . Smiling.
That’s the way to move on in life, don’t you think?
So….enjoy these pictures.
I know I do!

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