The more you know

For this blog entry I am bringing out and dusting off a piece I did almost a year ago on FB– before the blog and before the Captain Jacktastic page.  It’s a kind of crash course in what our day-to-day life is all about.  Because I wanted to dispel the myth that I sit on a chaise lounge all day reading People magazine, eating bon bons and sipping French 75s.  😉

Did YOU know……

I don’t sleep  with my husband?  Well.  SOMETIMES I do.  The night-time routine is as follows: The boy gets his medicine in the chair with Clay.  They snuggle and when it comes time for bed, Jack will say “PV OFF”.  Then it is my turn to take  him back to bed and get him to sleep.  Sleep for Jack requires a completely dark room and a sleep machine .  Getting him to sleep can take anywhere between 20 minutes to 2 hours. On a good night, I am able to rise from bed and go out to the living room and spend time with Clay.  AND get into bed with him and snuggle, etc.  Maybe even fall asleep. However,  sooner or later I make my way back to Jacks bed — for several reasons. One being if he wakes in the middle of the night he is almost impossible to get back to sleep unless there is immediate intervention. Two — early morning waking  is prime  seizure time.

Did YOU know……

Clay and I don’t really get to “date”?  We don’t have  those spur of the moments….”oh hey, honey, let’s go catch that new flick– So and So can come watch the kids for us!” Nope.  Once a week, the planets align and we get three hours of respite (5pm to 8 pm)  where we can go have dinner or cocktails, etc.  We hold this 3 hour time slot in high esteem.  It is necessary for us as a couple to have this, and we DO NO take it for granted.

Did YOU know……

Clay and I totally support each other going out for “girls” night or in his case “club meetings”?  We trade-off.  It’s only fair.AND only smart, too.  We need breaks.  This keeps us sane and our marriage functioning. Neither of us begrudge each other these respites.  And we encourage them.

Did YOU know……

Holding down a job can be hard?  Sure.  MOST jobs give you a set number of sick days- but a good flu or a bout of bronchitis can use them up.   Therefor Clay and I have to be über vigilant about our own health.  When your child is on immnio suppressants AND has seizures AND requires trips to Oakland Children’s Hospital  ….those days can get eaten up rather quickly.  SOME bosses have been understanding.  Others? Not.  So.  much. .  (“can’t you just put him on seizure meds?” Oh gee! *slaps forehead* why didn’t *I* think of that?!)

and speaking of seizures…….

Did YOU know…..

We are ever hyper vigilant?   Was that just zoning out or was that a stare? Did that smile look a little crooked to you? Did he just look down or was that a nod?  Even when Jack has been seizure free for months, there is always that nagging in the back of your mind.  There is always that worry of “we’ve gone so long (too long?!) without a seizure- are we DUE?”  So even when you think  you are  seizure  free you are not.  You live with the “what if ” fear every day.  Even good days.

Did YOU know……

As a family we must function as a well oiled machine?  and we ALL rise to the occasion.  That includes Darrah who is wise and compassionate beyond her 12 years.  She is her brothers greatest champion and I could not be more of proud of her if I tried.

Did YOU know…..

WE have to be on top of making sure medications are refilled in a timely manner (can’t use auto refill on “controlled substances”) ?Snacks must be low calorie, gluten free, etc etc etc……Grocery shopping is an adventure and we pray to the Chip gods for good sales at the co-op.  We plan, we plot, and make sure to NEVER run out of anything.

And lastly ,
DID YOU KNOW…….

I wouldn’t trade it for the world?

Times can be rough, tough and frightening, but never in my life have I been more AWARE-

Of small and large blessings.

Of what’s truly important.

Of what the true meaning of love is.

Of what real compassion is on a daily basis.

And I would not have it any other way.

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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.  😉

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)

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!

photo(42)

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.  ❤

The world goes on……

Let’s talk about anger.
Let’s talk about how angry and pissed one can get at the world, at life, at God, at fate, at any and all things because you’ve been dealt a lousy hand.

I see things differently now because of Jack.
I’ve seen his body wracked by seizures that were unstoppable no matter how many meds he got–seizures that got him life flighted and landed in ICU.

The world is going on around you and you want to SCREAM — Hey God! SOMEONE! ANYONE!
Look at this poor child and what he is going through!
STOP EVERYTHING and take care of it.

But it doesn’t stop.
It subsides.
The world goes on around you and somehow you slowly make YOUR way back into it.  Standing in line at the grocery store.  Brushing your teeth. Driving to work…..

You want to shake people by the shoulders……”look, you don’t need to get so pissed off that there are two more people in line at the express checkout! ITS NOT THAT IMPORTANT!”

I’ve held Jack while he has been in full blown status seizure, mindful of keeping him on the proper side, while his father tried to keep him with us, waiting for the ambulance to arrive.
I’ve been by his side in the ER while he is gone– keeping MY skin on HIS skin — trying to keep him tethered to us while doctors come in and out……asking more questions than giving answers- Jack’s father usually must guide them through the tried and true procedures.  We carry a laminated sheet and a bag of empty med bottles just for this purpose…..

But back to the anger.

Yeah.  I AM angry.  I am pissed.  I am indignant.
And it fuels me on.
To be a better person to those around me………Maybe others are dealing with similar issues and I cannot see it.
To give Jack the best life I possibly can…..to understand HIS world more rather than try to make him understand MINE.
To raise awareness of children like Jack to as many people as possible……..
To make compassion for ANY special needs brought to the forefront of our collective consciousness……

So yes.  I get angry.
But then ……….
I see this:
Jack making noises like the lawn mower. 
And it dissipates a little and I am reminded to
Stay in the moment.

 

Merry day of Lots of people here

A  friend asked me if  Jack was excited about Christmas.

The answer? Nah.
After all,  how does one EXPLAIN Christmas to a child like Jack?

You really can’t.
And really, why SHOULD you?

I can tell you this:
Jack is excited about all the LIGHTS!
I capitalize it because  he joyfully SCREAMS the word.The same goes for the Christmas tree.
I mean how cool is that?!  There is a TREE inside the house!
And that TREE has LIGHTS on it!
Jack refers to it as the TRISTRIS tree.
Our tristris tree is devoid of anything fragile or breakable.  I mean, what with all the lights and such, it is ripe for getting Leggos, straws and blocks thrown at it.
Christmas morning will be just the same for Jack.
He will rise.  He will get his bowl of  cereal and a drink and will sit in the chair watching Spongebob.  He will get his meds in a bowl of goat yogurt and mashed banana.  We will entice him to open presents.  And the best part will be:
RIPPING PAPER!  Sometimes the gift will be cool to him……but mostly its about ripping paper.  🙂

All the festivities will go about and Jack may or may not participate.
He may or may not stop to throw something at the tree.
He will just be Jack amidst all our strange rituals.
He will be.

And he will be loved.