...tight squeeze...

Pop by our home unexpectedly and you're sure to find a mess...
Or three, purposely ignored in favour of fun.  Doubtless, there will be dishes in the sink and paperwork threatening to fall off the table.  If it's early on a weekend, I'll be unshowered and disheveled...tackling the "dirty work" in yesterday's castoffs.  There will be chaos.  You'll marvel to find me just barely balancing on one foot, while every other limb is doing it's own thing.  I like to think of it as a finely choreographed ballet in which one hand can sign off on med. forms and mail, while the other stirs the pot and the foot nudges things into their place.  In all likelihood though, it's probably more like a tornado. 

Pop by unexpectedly, and you'll find me multitasking.

You'll have to look harder though, to find Mister Man. 

Check the corners, the dark ones.  Or the furniture, underneath.

Boy...with a blanket...and a book...in a basket.
Of course!
 Because in our home, Autism is part of the design.  

Since he was but a wee little one, Mister Man has been wedging himself into small spaces.  Cardboard boxes, laundry baskets, dog cages...no enclosure hasn't at least been attempted.  A former friend in Ohio was moving and brought over a small bench she thought I might like for my entryway. We left it on it's side, heading to the kitchen for a moment for refreshments. Mister Man, never one to miss an opportunity, flipped it onto it's back and wedged himself into the bottom, there to chortle happily to himself when we returned.  The following day found him snug as a bug in that bench bottom, complete with a pillow, blanket, and sippy cup. I learned early on to stockpile boxes and bins. Friends with babies knew to drop off their bulk diaper boxes.  The stockboy at Kroger would save me cardboard milk crates.  And every trip to Aldi's netted at least a few empty cartons.  I made sure to keep duct tape in stock for repairs, and art supplies at hand for imagination transformations.  My living room was littered with airplanes and trucks and boats, all made from boxes and all suitable for just one passenger.  I learned to go with the flow.  And to guard my laundry baskets behind a locked basement door!  

Even when he's not in it...he's "on it".
Laundry basket lover!
If, on a morning in May, my son wasn't in bed when I groggily padded to his bedroom, I knew to check the hamper in the closet.  By June, I'd installed a nightlight in said closet.  I gated off the kitchen at one point, after someone emptied out all the contents of the refrigerator and then restocked it...with himself!  
We had a laundry chute that ran from the top floor down to the concrete basement.  I was ever-fearful that he'd become curious and try to wedge himself into the hole.  Thankfully, that never happened. Locks on the kitchen cabinets and oven were a must.  I bought the magnetic kind and then hid the magnet...so well, in fact, that we had to eat takeout for several days until I remembered it's secret locale! A burgeoning friendship with a gal I worked with came to a dead stop when my son locked himself in her dog's cage during a holiday dinner.  I was thoroughly non-plussed, but apparently it was all too much for her to handle.  

Just. Add. Postage!
With his eventual diagnosis came the marvelous new term "Proprioceptive Input"...the keyword in understanding Mister Man's ongoing obsession with small spaces.  He was, as I had suspected, finding some degree of comfort in an uncomfortable world.  The close-fit spaces he was so fond of provided him with calming sensory input.  And, moreover, gave him a safety zone in which to be himself.

Pop by unexpectedly and you'll find him, so long as you know where to look.  Check the laundry basket beside his empty chair.  Or the space right behind it.  Look on the bed, at that small huddled mass.  Or behind the cardboard sheet angled against the wall.  

Can't find a small space?
Will create one!
While you're visiting, note the spares...flat boxes I buy from home depot at $5 a pop and stockpile behind my dresser.  Lift the top off the ottomans and see where I filled them chock-full of Legos so there's no room for him to hide away inside.  

Home Depot boxes:the best gift ever!

Perhaps you'll see his spinning office chair, or see the portable spinner that can go atop any chair hiding under the kitchen island.  Proprioceptive input again.  Spinning and rocking and leaning...

Leaning to close for comfort.  The boy practically climbing onto-into me in restaurants and stores.

The boy all snuggled up in a full length winter-weight robe...at the breakfast table outside on a hot summer day.  I'll be the one perspiring in a tank and shorts.  The boy piling blankets on our laps at the open-air theatre, despite the heat and humidity...and the melting Mami.  

High 80's and humid as a swamp...
but just look at that smile!
Pop by unexpectedly and you'll see the chaos and the calm...the mess and the order...
Pop by and you'll see that this home of ours is an Autism home.  There's thought gone into every inch...from floor to ceiling, and every nook and cranny in between.  


...tick tock tick...

I'm running out of time.
I feel it.
This obligation to rush.  This overwhelming, breath-holding, heart-pounding compulsion to squeeze every last thing into every last moment before that timer buzzes.

I vaguely remember the early days when time was at a standstill and weeks dragged on, one to the next.  When every day was full to the brim, but never seemed to end.  When change was slow and steady, and growth was measured in ounces and months.  And when, more importantly, the only real obligation was to ourselves and what we wanted this life of ours to look like.

Fast forward through all those ounces and all those months...fast forward through pounds and years.
Fast forward to today.
Today, in May.
Fifth grade but a month from ending. The first "graduation" on the horizon.  Puberty rearing its melodramatic, emotionally-unstable head.  The infant-toddler-little boy-big boy swallowed up by this man-child.  This ever-changing creature that I don't yet know...made up of all those recognizable pieces but somehow, suddenly, reassembled into a stranger. 

The old familiar is disappearing.  I say goodbye to a little more of it with every passing day.  I feel as though I'm trapped inside of a living pulse of heartbreak.  

For what I now realize was too brief a time, our whole lives were each other.  His needs filled mine, as my lessons filled his.  We were a team of two.  One solid unit.  Family.

That clock has been ticking all along.  Time marching steadily, stealthily by.

I have been his whole world.  He has been mine.  He is my whole heart.  

But 12 years have come and gone.  I am being left behind.  Pushed aside to make room for new people, new experiences.  He is my whole world, and my whole heart...but I am no longer his.  

It hurts.
The clock keeps ticking.  Now I hear it...the inexorable pulse drumming away underneath our day to day.  At 2am it pounds in my ears.  At 4pm it spurs me on, as I struggle to cram as much quality time into each available minute as I can.  Homework gets in the way.  The schoolday is my enemy.  I'm running out of time, and the obligations keep mounting. Projects and essays and work and phone calls.  Appointments and bedtimes and arguments and illness.  I want to yell STOP!  Loudly, angrily, silencing the chatter.  I want to push the pause button and hold off the inevitable for another 12 years.  I want to rewind, and live it all over again in slow motion.  I want to savour the childhood and the child.  I haven't had enough time yet.  I haven't had my fill.  I want so much more.

He is my whole heart. 

I can feel the walls of the box closing in around me.  The one he's pushing me into, though he doesn't even realize it.  I have gone from occupying every nook and cranny, every inch and mile.  I have gone from being so much larger than life. I have gone from being the framework of his whole world. Slowly, I'm shrinking to fit as he unconsciously builds the walls that will be my future.  It aches, this shrinking down. It's tight and rigid, and hard to breathe.  I went from being everything to something.  The box keeps getting smaller.  Soon, I fear, I will be inside the box.  And the box will be placed high up on a shelf.  "Mother", it will read in black Sharpie ink.  It will sit there on the high shelf as part of the collection.  Just another of the many bits and pieces that make up his whole, full life.  

I'll live in that box, observing but removed.  No longer his go-to person. No longer the answer for every question, the comforter for every pain, the soft place to land.   I'll become the back-up.  The fall back on. The cherished memory.  The old faithful.  The obligation that gets in the way of freedom.

He'll be my whole heart.  But I'll just be a piece of his.

I'm running out of time, and I don't want to do as I must.  I don't want to take my rightful place in that box.  I don't want to become an observer in his life.  I want to remain an experiencer, right in the thick of it.

I'm running out of time.  Time to enjoy the last moments of his childhood.  Time to impart wisdom and humor and grace.  Time to relish in being his favourite person. Time to be his cherished Mami. 

The clock is ticking.  It seems to speed up each day.  Everything is getting in the way.

I want so much more for him than just myself.  But I want nothing more for myself than just him.  

The time will come, and I will do as I must.  I know I will.  Because I want his life to be whole and full and free.  I will do what every good mother before and after has done or will.  I will sever the ties and smile as I wave goodbye, hiding the agony inside where he can't see it.  I will watch my whole heart go off into the wide world and pray that he keeps it safe from harm.  

But just for now, I want to tighten those knots, double up those ties and bonds.  I want to hold on with both hands and stretch out every moment to its limits.  I want to be a part of it all.  I want to answer the questions and comfort the pains and be his soft place to land.  Because I know it's almost over.  Time is fleeting.  Soon I'll only have the memories. 

I'm running out of time.      



...motherhood sucks...


This gig can suck.  

Suck the life right out of you.  Suck the time and the energy and the patience and the... Yeah, that list could go on and on.  Let's. Just. Not.

Spring break started off on a high note.  Pacing back and forth at the bottom of the drive, waiting for Mister Man's bus to arrive and gift me back the simple joys of  "family life" for a blissful, solid week.
Ah, vacation.  Time to reconnect.    Time to rest...relax....enjoy childhood and parenting.  No pressure...no alerts or alarms or deadlines...

It started on a high note.  The bus pulled up...the boy hopped out.  I grabbed his bookbag and chromebook and lunch bag (as I do) and we hiked back up the drive hand in hand.  Into the house...already giggling through plans for the evening. (Boardgames and popcorn outside, to be sure!) empty the bag....open the folder...

Crash!  High notes and high hopes took a tumble.  For inside that "should have been empty" folder was a giant packet of papers, paperclipped because no staple could hold them all.  

Invention Convention

Over a dozen pages outlining  the upcoming science fair, chock full of deadlines and outlines and parental suckiness. 

Oh yeah, motherhood sucks. 

(I remember being a child.  A child with projects due.  That sucked too.)

So there went the break portion of Spring Break.  Right out the door.  Instead of boardgames and popcorn, we hashed out hypotheses and proposals on draft paper.  I won't bore you with the details, but a final decision was rendered the night before school resumed.  Cue Mami, typing away at the proposal long after Mister Man has conked out next to her!

The proposal was accepted.  A note from the teacher reminded my would-be inventor that this year a working model was required. 

Aw, hell!

Working?  Model?  Can I send in my old portfolio instead?!?

Motherhood sucks.  

I'm already laying the emotional groundwork for my son if/when this turns into his first failure.  Because it's May.  I rallied the troops (do the two of us count as troops?) and blasted through September, October, November.  I class-mom'ed it up in December and January and February. I pushed us through March and April with sheer determination and lots of allergy meds.  I have typed and cut and glued.  I built a German Village.  I painted set pieces.  I have yearbooked and costume paraded and lunch ladied my little heart out.  I have homeworked and cello practiced and created 25 individual German walled cities.  I have IEP'ed and argued and advocated.  I have put things together and torn things down and decorated the classroom and hallways and teachers' lounge.  I have served food and discipline and life lessons.  I'm all PTO'ed out.  

And now it's May.  And I just don't care anymore.  It's May and he's graduating in a month.  It's May and he's maintained straight A's since Kindergarten.   It's May and this freaking project is due on Thursday and it is isn't even begun.

Because it's May and I don't know how to build computer application enabled tech devices for special needs  kids.  I don't even know how to fake it.  And neither does he.

But damn it, there's that proposal already submitted and accepted.  There's that due date in red on the calendar.  And there's that "F"...that big giant stinking failing grade (the first one ever)  if I don't miraculously figure out how to help him build this fabulous, brilliantly theorized, impossible invention.

Tomorrow is Mothers' Day.

Guess what we'll be doing?

Motherhood sucks.



...think fast...

Mister Man is bright, no doubt about it.  He always has been.  His mind is a whirring, ticking, clicking machine.  He's always thinking.


Always. Even at 3a.m. when he wakes me up to discuss the designs for his invention for the upcoming science fair. 

Even in the shower...when lathering up and rinsing off gets in the way of 'his process'. 

Not a morning goes by when he doesn't come tearing out of the bathroom, towel barely covering the necessities, to impart some newly discovered wisdom to me.  That early in the day, it's usually about design specs for future Transformers.  Super important.  And always right in the middle of my breakfast prep so I drop something, splatter hot food, slice my finger, etc...  Goodness knows my concentration goes right out the window the moment my ears process his voice.  

(Motherhood...it's a danger zone!)

At any given moment (yes, probably even when he's fast asleep) his brain is racing away.  So often when I look over at him, he's completely still...frozen in place...his eyes fastened on some distant horizon.  Conversations with him are never linear...nor circular for that matter,  I suppose.  Rather, they hop about from one topic to another....unrelated in any logical way to all but him.  One leads into three more which dissolve into something else entirely.  Pay attention or you'll get lost.  I do.  All the time.  And then I'm stuck with my own frozen expression as I search endlessly for that dropped stitch in a tangle of topics. 

 He thinks fast.
I can't always keep up.
Our conversations jump all over the place.
It keeps things interesting.

(Maybe that's partly why I still read-aloud to him in the morning...I'm stalling before conversing until the coffee can kick in and give me a fighting chance!)
Lately, I've become much more aware of this...as though after years of unconscious acceptance my subconscious suddenly issued a broadcast one morning.

Alert! Alert! You're falling behind. You're missing the point.

Now, all the time, I find myself consciously struggling to keep up...to stay focused...to follow each thread as it weaves in and out of a conversation.  Emphasis on the struggling there.  I simply can't keep up. He switches from topic to topic so quickly...while it takes me several sentences in to even realize that the previous topic has been abandoned. By the time I catch up, he's already moving on to the next one.

I'm thinking of requiring an outline first! Or a pre-conversation warm up? Maybe flashcards? At the very least, an I.V. drip for my coffee? 


...life interrupted...

We're readers.  This family.  We read first thing in the morning and last thing at night.  We read on park benches and in cafeterias.  We pack books in our luggage when we travel, and we stow others in the car every time we leave the house.  We bring books to the beach and to restaurants and to amusement parks.  

We're readers.  

We're escape artists.  We wander in and out of distant landscapes and other lives.  We disappear  between two covers and drown out the world.  We make friends and enemies and memories with people and places and creatures of black and white, colored in by our imaginations.  

The greatest gift life afforded me was my son.  The greatest gift I gave him was the stories.  I read to him in the womb, and stayed up late rocking him gently and whispering fairytales.  I read to him at every meal and during every morning and every night.  I read to him and he began to read to me.  Little words...little syllables. Strung together stunted sentences.  See dog run.  

Time passed as time does.  The sentences grew longer...the syllables multiplied.  From board books to Golden Books...paperbacks to hardcovers.  And still I read to him, and he read to me.  I read to him as we waited for the bus to arrive on his first day of kindergarten.  The Hardy Boys.  I read to him this morning, and every morning between that first day and this one.  The Hardy Boys.  We're working our way through the collection. Every day, we read.  

He reads his own books now.  Treasures purchased from the thrift store with tightly-fisted allowance.  Indulgent tomes bought with gift cards.  Stacks that topple over from the library.  Science fiction and fantasy co-habitate with Garfield.  Transformers and Doctor Who live next to Warriors.  

His teacher sends home a reading log each week.  At the very top is the reading requirement...100 minutes per week.  I smirk every time I sign off on the bottom...he averages twice that daily.  I'm tired of filling them out...pointless wastes of paper.  

I've never punished him for staying up late to read...under the covers with a flashlight.  I never will.  I did the same thing when I was his age.  Sometimes I do it now.

We read, and I am reminded that despite everything else,  I am lucky.  I got just what I wanted.  I dreamt of a family all curled up in a living room reading, when I was pregnant with him.  I imagined soft, quiet nights with warm mugs and turning pages.  I wished for it.  I got just what I wanted.  

When homework is light and we've time to spare, we'll while away the afternoon with books.  He with his.  Me with mine.  We'll sit in the living room or out in the yard...next to each other and yet miles apart...traipsing about on adventures in other worlds.  Disappearing.

Until he interrupts.  Until he reads aloud at me while I'm still underwater...dragging me up to the surface with his voice.  Interrupting my exploration...my imagination...my story.  Inspired to share something he found funny or frightening or curious.  Insistent that I experience it as well.  Interrupting.  



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