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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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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