...scheduled for demolition...

I made a mistake the other day.

(One of many, to be sure, as part of the rough and tumble of daily life.)

I made a mistake and went...off book...so to speak, deviating from the schedule that our household relies on so heavily, as I suspect most ASD households do.

Let's deviate right now, shall we?  Pick up a thread for a moment and unravel it a bit further?

Tangent time: Even before Mister Man's official ASD diagnosis, scheduling as a way of life was introduced to us.  The whole thing started with one of those early diagnoses...not ASD, but Speech-Delay, Motor Skills Delay, Communication Disorder, etc...  It started with Help Me Grow and early intervention and all those case managers and therapists and aides that paraded through my apartment.  The calendar was full...a scrawled on mess of gibberish with dozens of acronyms filling up each square, notations only I could decipher...and even I, only about 50% of the time.  I kept a copy on the fridge, and one by the door.  I meticulously wrote down each item in my day planner at the start of each week.  I'd review it, over coffee first thing in the morning, and with tea at the end of each night.  And still, I would forget.  I would forget an appointment, or which therapy was at which time.  I would forget to file a specific waiver, or return a phone call.  And at least once a week, I would realize we were on our way to the wrong location just in time to take the U-turn.  I was running on caffeine fumes and pure-adrenaline, battling insomnia and the ongoing stress of a broken marriage.  I was nothing but a cluster of nerves...reactive, reacting.  It was, as I remember ever so clearly, a time of reaction instead of action...just making it through another day.  

I was introduced to the concept of visual schedules early in the process.  One of the therapists took note when I spoke about Mister Man's gastric issues whenever we would leave the house, or have to make an unexpected stop.  At our next appointment, she supplied a long laminated strip of paper, separated into squares, each with a piece of Velcro stuck dead center.  Onto the wall it went, much to my dismay.  This giant white eyesore right in the middle of the livingroom.   A ziplock bag followed, a piece of masking tape temporarily holding it in place above the strip.  And there it was...the makings of our new way of life.  Little squares depicting every possible daily task.  Toothbrushing, toast eating, toileting and toilet papering...every little bit.  I got used to it quickly, setting up the morning routine before bed, the day during breakfast, the night while he napped.  And it was helpful.  Ever so.  Truly.  We could review it all day, every day.  I, murmuring the words as he watched my finger point at each picture.  First this...then that...then this...  Gradually, it became habit.  And as the days and weeks and months went by, those messy "issues" became fewer and far between as he knew what to expect next.  

The one strip grew longer, then doubled.  I found myself on the computer making a mini version of it to put on the back of the headrest in the car where he could see it.  In time, he helped me make a small flip book instead.  I carried a ziplock bag on me at all times, with the book and the pictures and a few blank squares and a pencil.  I planned for everything.  Going to the grocery store?  Images of each item on the list and the order we would get them in.  Heading to pre-school?  Clumsily drawn directions...first we pass the gate, then we turn at the big tree...  I planned for everything.  I scheduled everything.  I learned to set timers, both audible and visual.  I found apps for alerts on the phone.  I even carried around a tiny little stopwatch, so he could see the minutes counting down for each task, each item, each appointment.  

He grew...up and out and all around.  And so did the schedules.  Soon enough, the strip came down.  A rescued and recovered chalkboard took over one whole wall instead.  I used white-out to draw the calendar boxes, and chalked in each day.  He scribbled happily all along the bottom half.  Paint thinner took off the white-out a year or so later.  The minute by minute plans replaced by general images...school, home, park, bed.  He drew in between them.  Smiley faces next to the park.  Angry faces next to the bed.  He'd cross out school, scribbling right across it and circle home over and over.  Time passed, he grew.  Every age, every stage, a new iteration would develop.  School started for real...kindergarten.  Graphic organizers in his bag, in his pocket.  Schedules on every surface: bedroom wall, fridge, bathroom mirror.  3rd grade-folding up each day's schedule into a square small enough to fit in his pencil case.  5th grade-setting up a google doc on his chromebook.  6th grade-new planners, and then newer ones to replace the inefficient, ineffective school-provided one.  Now...calendar on the fridge.  Color coordinated.   Google calendar on the chromebook, the laptop, the ipad, the phone.  Planner in my bag.   Prompting alerts throughout the day.  Emails while he's a school...reminders of after school clubs and books to bring home, therapies and activities and rehearsal and dinner plans.  A school day chart smack dab in the middle of the fridge...every minute, every hour accounted for.  Each day broken up into segments.  Each box filled with tasks.  The schedule that makes daily life during the school week logical and sensible and acceptable.  

I made a mistake, the other day, and deviated from the schedule.  He was on "free time/entertainment choice" and I was washing dishes, my mind blank.  I asked, innocently enough, about the school day...interrupting his schedule.  It wasn't the right time to ask.  First "free time/entertainment choice", then "snack and review".  I deviated.  I asked about the school day and he answered, sort of.  Short, clipped answer. "It was ok."  Clueless Mami, party of one, hardly satisfied...asked again...be more specific... "How was Spanish?  How was Language Arts?  Anything new you learned? How was

gym?  What did you play?" 

"Ugh.  Fine.  Okay.  We played Prison Ball."

"What's that?"

"The game."

"Yes, I know...but what is it?  What kind of game?"

"The game we played."

"Ok, how do you play it? What kind of ball do you use?"

"You know."

"No, I don't.  I've never heard of it.  Is it like dodgeball?"

"No. Yes. It's fine."

Silence.

I sighed, audibly and physically...overly dramatic rise and fall of shoulders as I snarked inside my head...frustrated.  I finished rinsing the last dish, placed it in the drainer and dried my hands.  Mopped up the water on the counter.

He stood up.  Walked over.  Blocking my exit from the kitchen.

"Mami, is there something that scares you?" he asked.

"Huh?", my reply.

"What makes you panic?" he asked.

"Umm...thunderstorms?  Bees?  Definitely bees.  Remember the time I got stung by all those wasps?  Thank goodness I wasn't allergic to them.  But bees.  I'm allergic to bee stings.  I definitely panic when I see them." I answer.

"I know." He says.  "I remember.  I get that way when I have to talk.  Or when I have to explain things.  Trying to explain something that I get to someone who doesn't get it makes me all frazzled up inside.  Trying to remember the details too soon makes me nervous.  Talking about my day makes me feel hot and stressed. "

Silence.

Again.

I stood there, hearing him...really hearing him.  In the silence, I heard the tick tock of the kitchen clock and looked up, noting the time.  I had made a mistake.  Deviated from the schedule.

He was frustrated.  Tense.

I had interrupted his recovery time.

I had also, I realized, expected a response that he was incapable of giving.  I had, in some way, forgotten his limitations.  Or ignored them in my own empty-headed asking as though he were typical and conversations about the day a commonplace occurrence.

"Whoops." I said.  Just like that.  "Whoops.  Sorry about that.  How's the papercraft?"

"It's good" he said, and headed back to the table.

I grabbed a towel and picked up a dish and started to dry. One plate, one bowl, one mug.  Over and again. As my mind raced.  Internally kicking myself for the mistake.  Heart bleeding a bit as the words really sank in and I understood the feeling.

There's a  school day chart smack dab in the middle of the fridge...every minute, every hour accounted for.  There's a spot on it...five spots really...Monday through Friday, for "snack and review". A time to ask specific questions and get general answers.  A time to tease out all those important little bits that I can follow up with teachers and therapists and aides about.  A time to check in and carefully, cautiously make sure that he's ok.  Make sure the day didn't break him apart too much.  Make sure he's still mostly intact.  Make sure that I know what pieces to fix.  

Stick to the schedule, Mami.  Stick to the schedule and we'll be fine.

~Leanna