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!

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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.

Effortless Doing

Maybe I haven’t made this clear to you:
I love Jack.
I love Jack differently than I have ever loved anyone or anything before.
I can see you shaking your head…..”well, DUH!” you are saying to yourself, “of course!”

But

it’s not that simple.

This is not to say that I love Jack BETTER than I love anyone else.
I have a daughter that I gave birth to and she gave me purpose in life.  She healed my wounded heart just by her presence and who she is becoming.  She is her own creature.  She is beautiful.  She is compassionate.  She is kind,  She is fierce.  OH! Sure, she can be a pill and then some.  After all, she IS 12 and adolescence is not easy on ANYone involved.

But Jack……we have a different relationship.  Yes.  I take on the Mama role.  Yes, I AM a caretaker, nursemaid, autism whisperer, respite worker,  behaviorist and one on one aid all rolled into one.

But here is something else I am:
STUDENT.

Make no doubt about it.
Jack is my little zen master.
I have a tendency to barrel through life.  I am ever fueled by caffeine buzzing at a high frequency, trying to get 12 hours of work, cleaning, crafting, family time, etc into 8 hours time.  Sleep?  THAT’S for ametuers.  There is STUFF to be done! Let’s go! Multi-task! Chop Chop!! Mach Schnell! GO GO GO!!

And while people are amazed at what I get done…. I lose a lot.  The daily nuances of life.  The tightening of jelly jar lid.   The shutting of cabinets.  The details.

Jack has helped me to amend my ways.
To get me to slow down and be on Jack time.
Jack doesn’t stress about time.
Time is not a Jack construct.  You want to spend four hours standing at the fence taking apart a giant fuzzball to watch the tiny pieces of fuzz blow away in the wind in a random pattern?  Go for it.
All you have to do is breathe.

So.  I stop and I sit with Jack.  I LOOK at what he is looking at.  I try to see it as he does.
And you know, often times I am surprised by what I see……. A shadow.  A line.  A cloud formation.  The sky.
Have any of you really REALLY looked at the sky lately?  AND took it in with awe and innocence?
I highly recommend it.
You could argue that Jack has the luxury of this because of his “situation”– the brain damage,  the autism, the TSC.
And you would be correct.
But you would also be wrong.
Because Jack does too have a choice.
And Jack embraces that beauty.
Jack finds that joy.
Jack has mastered the art of  effortless being.

In the Tao of Pooh, while I run around being a bit of Rabbit (too busy, too thinking) and Clay represents Owl (knowledge is all)
Jack is our Pooh.
He is.
Rather, he IS.

And that is where my love for Jack differs from anyone else I have ever loved.
Jacks love is who he is.
It is his smile given.

It just is.  
He has no hidden agenda, no pretenses.
He is who he is.  And who he is pretty darn easy to love.

(deep breath in aaaaaaaaaaaaaaaaaaaand out)  ❤

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.  😉

Not now, honey, mommy’s busy…..NOT!

Of the many hats I wear…”sewing teacher” is one that I occasionally don.
Yesterday I gave a lesson in cleaning up your sewing machine (basic tension, adjustments, etc) and pillow enveloping to Jack’s one on one aid.
She is a peach of a woman that has been with Jack for years.
She is a woman who delights in Jack and Jack feels pretty much the same about her.
He says her name with warmth and a wistful smile.

So, just imagine Jack’s surprise yesterday when she showed up at our home…..
He was beside himself with joy and delight.
She sat down and he immediately wanted to show her things….DISHWASHER!! DIANE!! DISHWASHER!!
Then he came up behind her with his beloved (and rather stinky) Giants Baseball cap: HAT! ON THE HEAD! DIANE!! HAT!

His voice was nothing but shrieks of joy.

He was giggling.  He was beaming.  He was happy.  He was chatty.

All while she was here, he was a little bumble bee in flight, coming up behind her to tell her things, to show her things, to just smile at her.
Believe it or not…….we DID get things done.

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I think about what our reaction would be if Jack was a “typical”?
Run along…… we need to get this done.  Don’t be a pest dear, we need to work on the machine, etc etc.
But this is Jack.  And these communications, interactions, and moments are important.  And special.

So they are encouraged.  They are savored.  And they are applauded……

I think back to when my daughter was younger….I was guilty of the “run along dear”.
Now…..Not so much.

I try on a daily basis to connect to her.  To SEE her.  To learn from her and to teach her.

Come to think of it.
I’d like to do that with everyone I meet.  🙂

My Funny Valentine

My funny valentine
Sweet comic valentine
You make me smile with my heart

That’s Jack.

Just when I am about to lose my shit  mind because I have been picking up Leggos, shoes, and fuzz for well over an hour and can’t seem to make a headway in normal household chores because I have to untangle a slinky from the ceiling fan while fetching another bowl of “chips, YES! chips” and the demands to find a specific toy ………. AIEEEEEEEEE!
He will do something so intensely adorable I am floored.
Or
He will become so incredibly PRESENT I have to stop and be in the moment with him so I can take full advantage of this open window to learn, to teach, to BE THERE.
Or
He will repeat something– a song, a snippet of conversation, a commercial, a sound– and I will be astounded at the process that it took to go in one of Jack’s ear– ramble around for who knows how long– then come out his mouth.

I have these moments with Jack–
And I love them.
They pull me up short.  They take me by surprise.

They delight me.  They humble me.

They remind me what I am here for.
They remind me to be grateful for this time of (knock wood ) no seizures, good health, and happiness.
They are the smiles of my heart.

While I have never been fond of Valentines Day as a holiday, for Jackson, I will make an exception.
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Another day, not just another dollar

As I write this at 5:20 am, Jackson has been up since 4:20 am.
The first 15 minutes of which was him in bed hittting the covers, then flinging his arm upwards with the sound of
“woo-hooooooooooooooooo! *gigglegiggle*woooooooooooooohooooo! *gigglegiggle*
No amounts of gently rubbing his back and quietly saying “shhhhhhhhhhhhhh nighttime.  shhhhhhhhhhh bed” was going to change the fact that Mr. Jackson was ready to get up and at ’em this morning

I must say, as far as early risers go:  Jack awakes with a purpose and a joy.
I watched him trundle down the hallway and into the kitchen with a giggle.

And I think back to Jack’s day yesterday.
HE HAD A GOOD DAY.
Wait.  Not JUST a good day.
He had a day that was full of contentment, compliance, and joy.
He came in from an afternoon of throwing fuzz bits to the cold crisp breeze.
He ate his dinner with no complaint.
He sang while walking down the hallway to get a bath.
We sang songs and splashed in the tub.
He delighted in teasing us about one of his toys…….
(Octagon! “no, Jack, that is a circle!” *giggle giggle* OCTAGON!!)
He engaged us.
He made eye contact.
He responded to love and hugs.
When it was time to settle down, he requested chair time with daddy-
(wanna sit with you.)
He cuddled and became sleepy with daddy and went willingly to bed.
He talked of his day to me before falling soundly asleep
(circle.  mmmmmmmmmm wooohooo!mmmmmm octagon. spinning.)

Then finally : soft contented snores.

And I knew.  He had a HAPPY in his soul that day.

Truly happy.  A contentment. A gratification he had- it seemed– with himself for successfully navigating the world….

hmmmmmmmmmmmm
now that I think about it……
maybe that’s why he just couldn’t wait to get up –

and do it all over again.

*sips coffee*
Lesson learned, Tina, lesson learned!

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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.  🙂

SEIZE the day

Question:
Do you know what a seizure looks like?
For reals and for true?

Unless you are related to a person with epilepsy or a seizure disorder, chances are you don’t.  And more power to ya’–  I hope you go your whole life without having to deal with one.

But let me tell you– you may see someone having one and not even know it.
TV and movies would have us believe that seizures mean a person flails around like a just caught fish and comes out of it fairly easily.

yeah.

not…..as……such.
Jack has/had seizures.
I have seen him flail around and held him while it happened
But TV doesn’t talk about how the body goes dead weight, stiff and has a jerking motion to just one side…
or the vomiting
or the loss of bowels
or the danger of aspiration
or the danger of not breathing
or the possibility of being life flighted
(Check the lips, check the pupils, get the rescue meds, call 911)

yep.
There are those seizures.

Then there are the ones that are NOT like that.
The body stiffens, the eyes go glassy and the head drops.
Jackson becomes non responsive and we try to “talk him back”
And they pass……

Or Jackson starts to grind his teeth and gag…..
That starts another type…..

You have heard me talk alot on this blog about living in the moment
But I must also say that we live moment TO moment…..
Waiting.
Watching.
Watching.
Waiting.

It can be exhausting.
And you can never let your guard down.

I give you this video to watch –it was taken a few days ago.

Jack was having a grand time watching our neighbors dog chase bits of fuzz ball over the fence….
It was FABulous fun.
But watch.
WATCH the video in its entirety,
And see if you can spot our lives change in an instant.

Seize the day, my friends…..because every moment is precious.

And just so you know….
He was fine.
A little rest, a snack , and water and he was back at being Jack.  ❤