It’s a marvelous night for a moon dance

Clay and I have what I would consider a pretty strong marriage and helm what I consider a pretty amazing extended family.
It doesn’t happen effortlessly.
Things are planned.
Things are talked out.
We run like a well oiled machine– we HAVE to.
One of the things that special needs children/children with autism need–THRIVE ON– is consistency.

So we push our egos out the way, roll up our sleeves and do what needs to be done.

In that, though, comes the danger of burnout.  Of stress. Of losing touch with everything around you.

Clay and I are each others biggest cheerleaders.  I TOTALLY encourage his “club meetings” (he and two other teachers getting together and doing “guy” stuff) . In turn he totally supports my time in the sewing room and the pedicure chair.  Darrah too gets encouraged to get out and be with friends.

But what about Clay and I as a couple?  Yeah.  THAT can be rough too.
We receive 6 hours of respite a week in 2 three hour chunks.  One of those chunks is an afterschool time slot that allows me to either get some household chores done….or run errands unencumbered of children.  The other time slot is usually Thursdays from 5 to 8 pm.  This is known as DATE NIGHT.  It is untouchable time for ANYTHING else other than Clay and I leaving the home and getting out.  We hold it sacred.
It’s not all fancy dinners, either.  It’s just TOGETHER time.
Time to reconnect and remember WHY we got together in the first place.
To reconnect as adults
To BE us.

We may go out to eat (with coupons!) We may walk the piers at the waterfront. We may sit in a great spot and listen to podcasts.  But the point is WE DO IT.  And we don’t take it for granted.

But what about family time?
You know, when you have special needs in your life, spontaneity is usually NOT the name of the game.

But you now what?
Last night it was.
Furthermore, it was not OUR idea, but Jack’s.

It has been unseasonably warm here as of late, and the air quite still.
Clay and I were exhausted.  We had a long day.  We went through Jack’s nighttime ritual (meds,etc) and Darrah was in bed after goodnight hugs doing some reading.  We settled in for some DVR’d THE SOUP and some veg out time.  Mindless activity.
Because that is what we NEEDED, right?
Wrong.

Jack, from the other room, suddenly said:
“shoes on! Daddy! Shoes on!”

What the…..?
SHOES ON?!
It was almost nine at night!
I sighed.  Then Clay said, “Jack has the right idea.”
So, crocs on and out we go.
The night was beautiful.
Jack ran to the center of the yard and danced.  A back and forth motion.  Chanting: I see it I see it I see it! I see the moon!

We sat there enjoying the night air.  Soon Jack found himself on the bounce-poline– He called, “TINA! TEEEEEEEEEEEEENA! bouncepoline?! ”  And so I went and bounced him.  All the while we chanted, “I see the moon, I see the moon, I see the moon!”

This was too much fun.
So we called for Darrah.
We all four sat under one of my HUGE quilts.
We watched Jack run in the moonlight.
We listened to Jack and Darrah laugh uproariously on the trampoline– climbing on each other.
Clay turned to me and said:

“Jack knows what’s up-
You play outside when there is sunshine and go outside to see the moon when it’s shining.”

And it’s true.
We were out there for two hours.  Watching the clouds.  Listening to the laughter.
Talking.
Being silent.
Being a cuddle puddle on the trampoline.

Right before we went in, Clay hugged us all close and said, ” This is what’s important.  THIS”

And its true–
It took Jack’s spontaneity to bring the family together and remind us that sometimes
you just have to dance with abandon in moonlight.

 

Advertisements

Every little thing is gonna’ be allright

I am not a complainer.
Seriously.
I am an eternal optimistic PollyAnna that can find the silver lining in any cloud.
Looking back over my life, I realize that it is/was a pretty hardcore coping mechanism.
“Everything will be ok.  It HAS to be.  Otherwise, I’m screwed.”
I can endure anything, if I know it is finite.

Now, while the majority of you reading this may think it’s an admirable trait, I assure you that it is not always a good one to be around.   It can smack of denial, sugar-coating, and dismissal.  I can attest that it drives my husband bonkers.

As a mom of a special needs child, I read a lot of Mommy/Daddy blogs.  I love connecting with other parents who truly GET what I deal with on a daily basis.  Many of these blogs are laundry lists of good-natured complaints about their kids’ behavior, frustrations of dealing with bureaucracy and red tape, and the agony of sleep deprivation.  There are detailed accounts of their days of stepping on Leggos, living with extreme OCD and other substantial letters, and cleaning up messes.  Some are angry.  Some are frustrated.  Some are at their wits end.  Most all are honest.  Many of them are funny.

MY blog? I cannot do it.
I just cannot bring myself to write that way.
And believe me when I say:
It’s not YOU, it’s ME

Unlike other parents, I SIGNED on for this.
I knew the job was dangerous when I took it.

I didn’t get “the diagnosis”.

I didn’t have to deal with the unknowing.

There was no initial heartache followed by resolve.

So, TO ME, to complain and/or vent about my lot would be unfair.

It’s been MY lot in life to make lemonade outta lemons, quilts outta scraps, and the BEST outta every situation.
I came to this table, sleeves rolled up and ready for whatever was going to come my way.
And to be fair? It’s how I deal with most everything.

I am not better than anyone.  I am just different.
As I stated before:  It’s a coping mechanism left over from my childhood.

And Jack.
In the time since I have come into Jack’s life, I have seen his behavior improve, his vocabulary explode, and his joy blossom.  How can I gripe about anything when there is so much growth?
Not just Jack…..But ME!

Jack has given me a new outlook on life.  He has me focused.  Dialed in. He has taught me to let go of what is not truly important in life and to live in the moment.

As I approach the first year of blog writing, I realize that I have found MY niche in blog writing
(ya’ gotta have a gimmick, right?)
And that is to pass onto people a little bit of my PollyAnna attitude.
To shine a light on the good in the “bad”
To remind others that THIS TOO SHALL PASS

and everything WILL be ok.
It just all depends on how YOU look at it

And from where I am sitting?
The view is pretty beautiful.

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.

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.  🙂
*****************************************************************************************************

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.

photo (15) photo (16) photo (17)

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.  😉

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.
photo (1)

The best laid plans………

Let me tell you about traveling with Jack.

HE LOVES IT!
Jack could sit in the car and ride for hours and hours and never get bored or complain or want to stop…….He is delighted by the “spinnings” on the cars. (wheels) He see squares everywhere. (fences and bridges). When the wipers come on it brings a paroxysms of unadulterated joy.

Now. Let me tell you about traveling with Jack.
It requires an immense amount of planning and list making.  Meals made ahead of time.  Baby monitors, sleep machines, toys, dvds, medication. Special blanket and airplane pillow.
Scoping out the hotel room to look for dangers.

And so it was with this in mind we proceeded to Oakland Children’s Hospital for our appointments– oh! and please bear in mind, that OCH is a good six hours away and requires all sorts of planning for my dear husband and I to get away ourselves.  AND making that all work with the doctors and clinics we need to see once we get there

Did I mention the word logistics?

Rightio, then.
We planned to leave right after work on Wednesday.
Clay had the car loaded and ready to roll.

All systems go, 3, 2, 1………
AND WE’RE OFF!

True to form, Jack had a blast.
I was able to get some handwork done, and Clay was ever the stalwart driver.
We made good time and arrived at the hotel knowing we had an early rise to get to OCH in the morning to be sedated for the MRI.

Except…..
That’s NOT what happened.
Upon arrival at the hotel, Jack became grumpy.
Once in the room, he climbed up on the bed and asked for blanket and pillow.
While changing his pants and clothes we realized:
FEVER.
Not just warm, but HOT.  Baked potato hot.  Had it been a cartoon, you would have seen the waves of heat coming off him.

Not good.  Not good at all.
This was a game changer.  You can’t go in to be sedated for an MRI if you have a fever.
Fevers like this can trigger seizures (even in “regular” kids).
No time to think about anything, but get the fever down.
Strip him down. Acetaminophen. Cool rags.

Soon, he was comfortable enough to sleep.  I crawled in bed next to him.
He snuggled in, grabbed one of my braids, sighed, and fell to sleep.

HE slept well.  ME? Not so much. Clay? Not really at all.

Waking brought a round of phone calls, rescheduling and trying to get another game plan going.
They scheduled us for the next morning, providing he could go 24 hours without a fever.
Jack seemed to be on the upswing…..but….who can say for sure……OK.  we’ll try that.
The next day Jack was moving slow, but in good spirits.  Only slightly warm.  We ventured out for a drive.
By early afternoon we were back to fever (not as high, acetaminophen doing the trick)
and the next days appointment cancelled as well.

So the bright side?
Lots of lounging on a big bed with fluffy pillows.
Naps.
Showers with unlimited hot water.
AND no household chores pressing in on us making us feel like we needed to get SOMETHING done.

SO back to the drawing board.
We are looking at trying to plan the next round of appointments around ANOTHER set of appointments that needs to be done in April.
Good Lord willin’ and  the creek don’t rise, we can get it ALL scheduled for our spring break.

Here’s hoping!

photo(43)