...the normals...

Parents raising special-needs kids live in a world of words.  Our heads are like data hubs...full to the brim of specialized terminology and acronyms.  Special-ed parent groups like the ones I've run provide members with worksheets to fill a notebook...all chock full of enough terms and definitions to write a dictionary sequel.  In fact, that's how they're "marketed"...as the special-needs parent dictionary...all the terms you need to know to make it through meetings/appointments/appeals/mediation.  

We sit in meetings and conferences-read studies and articles and blogs-we let our data hubs run wild, collecting every word that we might need.  We learn, quite quickly, that words are power.  The right word for the right request at the right time garners our child(ren) the right services and supports.

We understand that words can appease-can incite-can emote-can identify.

As special-needs parents, we understand that last one deep within us...to our very bones.

We understand that words can identify.

Can divide.

Can exclude.  

We understand that words can make Us separate from Them.

A parent shared with me this anecdote recently.  She works in a nearby district's BOE office and received a phone call from a concerned parent regarding a recent bus-route change that involved the provision of transportation for a special-ed student.  The parent in question was "filing a complaint", so to speak, as she felt the change was adding undue time and inconvenience to her child's bussing schedule.  Complaint box open-all well and good-file at will.  Then the moment...

Continuing in her complaint, she decried the change, stating it was unfair that the normal kids be put out for the special-ed student's transportation needs.  

Ah, normal.

Let me digress(somewhat) for a moment and talk about my relationship with that word.  I loathe it.  In a...with every breath in my body, every fiber in my being...kind of a way.  Loathe it!  Normal, as far as I'm concerned, is the most elitist, exclusive, excusive word in the dictionary.  It's very existence promotes the idea that we should all divide down the line...

Normals over here/Abnormals over there

Normal is dismissive, and diminishing.  Normal is fault-finding and failure-insinuating.  It's this horrendous, thoughtless, sensitivity-free tool whereby individuals humble and belittle one another.  It's the very thing that reduces each person's unique gifts to garbage, and defines their beautiful differences as disorderly.  Worse yet, it is the basis for excusing hostility, indifference and bullying.  

Normal.

If it is to be believed that normalcy exists, then that very assertion identifies others as abnormal.  But more so, it asserts that only select individuals can fall into the category of normalcy. No doubt, only those who check off all the boxes in a very specific set of parameters.   Where then does that leave everyone else?  

My Native-American lineage shows in my complexion. It's darker than my neighbor's, but lighter than my friend's.  Which of us is normal?

I have musical talent, but no head for complex math.  One acquaintance is an accountant, who plays guitar in a band.  One cousin couldn't find the right pitch if her life depended on it.  Which of us is normal?

My son has autism, has olive skin, plays the cello, solves complex equations in his head.  His classmates are classified, or not, or simply not-yet diagnosed.  His classmates are Caucasian, or not, or half.  His classmates are in band/orchestra/chorus, or not, or maybe they sing in the shower.  His classmates are math-wizzes, or failing pre-algebra, or averaging "Cs" in average classes.  Which of them is normal?

Of myself, my neighbor and my friend...which of us is abnormal?

Of myself, my acquaintance, and my cousin...which of us is abnormal?

Of my son and his classmates...which of them is abnormal?

Or, put more plainly (as the word abnormal has the power to identify) which is more deserving of being excluded, ostracized, denied those rights and services provided for those who are normal? 

So let's go back to that anecdote, shall we?  The parent caller was identifying her child as normal, and the special-ed child as abnormal...as a device to diminish one child's rights to fair and equal treatment.  What was the goal?  To remove the special-ed student from the bus so as to lessen the burden for the caller's child.

The burden? A few minutes longer on the bus ride.

A few minutes longer on a bus ride to insure that a member of the school's student population could receive the safe transport he or she is entitled to as part of what that school district offers to all students.

All of it's normal students.  Those who fit the parameters the school district has set.  Likely, based on distance from school.  Status of attendance at school (defined loosely as full-time attendee vs. receiving in-home services).  Or perhaps, a service provided to all student attendees no matter their home address or attendance status.  But nowhere defined as a preferential service catering to normal students with preference given to those who are not receiving special-education services. 

This acquaintance of mine who was sharing this anecdote is also a special-needs parent.  (Imagine that...it's like we have a club or something!) She finished her story by sharing her frustration as she attempted to appropriately do her job while also advocating for her...my...our...all children...correcting gently with "general ed" instead of "normal".  Knowing that her minor intercession...her attempt to advocate and illuminate and generate a more inclusive mindset, fell on deaf ears.   Knowing full well, as I do, that in a world where the apple doesn't fall far from the tree, there are far too many parents raising up future adults to believe that there is a divide of normalcy/abnormalcy between them and those special-needs individuals inhabiting their world...their schools...their workplaces.

She and I spoke further, both allowing our frustration to bubble up and over (Because it needs to, sometimes.  Because we can't just hold it in all the time and "rise above". )  We relished in the time we had, as like-minded Mama Bears, to exercise our vocabulary and excorcise our ongoing irritation with a normal society that diminishes our children and declares them Not Normal.  

Maybe it's us.  Maybe we parents are the ones who just don't get it.  Here we are, looking at our kids...our special-ed kids...and we see normal.  We see everyday life.  We see homework and grading, due dates and transportation.  We deal with teachers.  We worry about friendships and bullies.  We are doing what you are doing...even if we're doing it differently or on a different schedule.  And our kids?  They're out there being kids, just like your kids are. 

She and I, and all the other special-needs parents out there in your world...your schools...your workplaces...we're wishing and praying and hoping, beseeching and pleading, demanding and fighting for our children to be recognized as part of:

Part of the world.

Part of the school.

Part of the workplace.

Part of normal.

Because...heads up...they already are!  

~Leanna

 

...wet socks...

Right now I should be proofing the speech I'm giving tonight. 

Right now I should be sitting across from Mister Man, seeing to it that he stays 'on task' with his homework.

Right now I should be tackling the dishes, putting away the leftovers and cleaning the counter. 

Right now. 

Right here.

Checking in from the bed, instead.  Propped up on pillows, laptop cross my knees, I'm over here on a self-imposed  timeout that not even the cat dares disturb.  Because less than 5 minutes ago I was well on my way to an epically stupid rant of a temper tantrum.  Yup, full-scale arm-flailing nonsense-yelling dish-tossing temper tantrum. 

Over

Socks

Ok, in my defense the socks were wet.  Well, not at first.  At first the socks were dry.  The dry socks that I just put on as I was finishing getting dressed for (that speech I'm supposed to be rehearsing) my presentation tonight.  The dry socks that moments later should have could have would have been going (still dry) into the boots right past the kitchen. 

The suddenly sopping wet kitchen.

See where I'm going with this yet? 

No?  Eh, neither do I.

Instead of putting dry socks in boots, I walked right into it...literally...and thus, wet socks.  The spilled juice that was only half-wiped up when my unfortunate socks decided to finished the job sponge-style.  You know that shock you get when a drop of rain slips right past your hat/hair/collar and gets you right in the back of the neck?  Suddenly wet socks in the middle of your rush to change feel just like that. 

And they will make you yell.

Or yelp?

Nah, yell. 

Cause yelping usually doesn't include profanity.

And I totally did.

Thus, self imposed timeout.  Wet socks still sponging away in the middle of the kitchen floor where I left them.  Left them after literally screaming my head off whilst yanking them off my feet.  Left them after letting loose with the mom-rage...that pent-up tight-lid crapola that has absolutely nothing to do with anger and everything to do with being utterly exhausted with no hope of reprieve. 

Ugh.

Mom Fail.

Wet Socks.

Right here.

Right now.

Mom Fail.

Just. Stop. Screaming! 

I think the flu drained my reserves...of patience, and sanity.
Yeah, that, that's what I'm going with. 

~Leanna

...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.  

...motherhood sucks...

Seriously.

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.

~Leanna 

...laying claim...

Just the other day I shared some recent photos of Mister Man with his paternal grandmother.

Yes, I left that door open.

No, it doesn't get used much.

Anyhow, we were corresponding via text message and she wrote that she missed the frequent photo updates I used to send but haven't kept up with.  

There are reasons for that.  

No, I'm not sharing them.

At least, not today.

I spent the next half hour or so inundating her inbox with my recent favourites. 

Bearing in mind how many I take, she should consider herself quite lucky that the photo-implosion only lasted half an hour!

Let's be real.  I'm that mom.  The one who practically glows neon with pride.  The one who documents everything. The one who has boxes and totes and bins full of saved "treasures".  

The one who photographs everything.

Not a revelation if you follow me on Instagram.

So there we were, amicably neutral in our exchange of photos and comments when it happened.

The words.

There in black and white.  

Or rather, white on black. Text message screen, after all.

"He looks just like you!"

"He used to look so much like C. but he's really grown to favour you!"

~~~~~

I remember vividly being at the farmer's market soon after I became a single parent.  This well-intentioned (no, really!) older gal leaned over my son's stroller and promptly exclaimed. "Well, isn't he handsome?  So cute!  He must look just like his dad!"  I froze.  Completely froze. 

In year's since the retelling has included my inner voice.  The one that wishes it had spoken and said "Seriously?  So what?  I'm not cute? And my kid doesn't look like me?  Seriously?"

Listen, when you have a boy there are certain things you just have to come to terms with.  He's going to choose the worst possible moments to inappropriately touch himself.  You're going to trade in your skirts and heels for jeans and sneakers at some point.  And every time, without fail, that you meet someone at the park-playground-grocery store, they will remark on how he must get his looks from his dad.  

The one they've never met. Or seen. The one who might not even exist.

And you will have to suck it up and smile and move on...

Because, they're right.  He does. After all, his dad is male and he is male...so...yeah...  

But as any single parent can tell you, what we really want someone to say is that they see the resemblance of our children to us.  They see the time and effort and hard work that the parent who is present put in. 

It's been years of slow and steady progress in developing an ongoing and healthy-feeling relationship with my  ex mother-in-law.  There have been countless times where I have had to grin and bear it.  I'm willing to admit that probably goes both ways.  But the truth of the matter is that her son's role in my son's conception never made him a parent.  My son only has one of those and it's me.  

I'm the one who breastfed and diapered.  I'm the one who rushed to the doctors or the schools. I'm the one who learned all the therapy terms and tricks.  I'm the one who homeschooled and homeworked.  The one who consoled and encouraged.  The one who cheered on and defended.  The one who did the work.

All of it.

He didn't play soccer because his dad used to. 

He did it because I made it happen.  

He didn't develop a love of reading because his dad enjoys reading.

He did it because he grew up watching me love reading, and listening as I made books come alive for him.

He didn't excel in school because his dad was good at math.

He did it because I homeschooled and homeworked and pushed and pulled and prodded.  He did it because I was present to assist and encourage.

Each of those statements above have been stolen from me at times.  Phone calls that hurt me because they cancelled me out of the equation and tied his successes to this other person who's never contributed.  

But then there was this. This day.  This text message. This allowance.  

I lay claim to it all. Loudly. Proudly.  He is who he is because I am present.  

I may have been the only one to struggle through the challenges.  I may have had sleepless nights and a broken heart.  I may have felt defeated and failed. I may have sacrificed everything. But in the end, I win.  

I win.

Because I am the only who can honestly claim the victories.  

I get to be a part of his success story, because I'm the one who laid the paving stones...

He looks like me.  He loves like me. 

He is altogether uniquely himself.

And he is altogether mine.

I lay claim.

Two peas in a crazy pod!

...winds of change...

We've all heard it said countless times before…

"The more things change, the more they remain the same"

I wonder to whom the credit belongs for those wise words?

The typical frame of reference seems to be generational.

The elderly referring to history's repetition. The adults scoffing at youths' imagined uniqueness.

The parent observing the ebb and flow of a child's growth and stagnation...

10 years ago, the diagnosis was new.

And it rocked my world.

Shook the very foundation.

In that moment of emotional fragility it felt as though someone had taken all the pieces of my puzzle-life and thrown them into the wind.  In that moment I was broken.  In that moment I thought everything had changed.

The funny thing about moments like those are the way in which they can seemingly last an eternity.  It's as though the rest of the world around you slows to a crawl and fades away.  Your breathing halts...your pulse quiets... 

But your brain incomprehensibly speeds up.

Lightning fast.

Jumping from one train of thought to the next as it searches out correlations and answers and strategies…as it searches for the solution.

It's as though, in that moment when everything else slows and stops, your mind is actually able to work at its full potential.  

I've told the story…our story…so many times it's as though I switch on the auto-pilot.  The sunny, fun, innocent moment before the phone rang. The darkness that clouded my vision. Sliding down the wall, gripping the phone. The voice coming through a tunnel...

And the spark of clarity that followed in time...when I realized he was unchanged. 

A diagnosis. A name for a way of being. A framework in which symptoms fit.  An explanation for the ebbs and flows.

But not a change. Oh no, not a change at all. 

You see, the change had already happened.

Not to him.

But to me.

And not in that moment.

But long before.

The change had happened the moment I became a mother.  That very moment.  When everything in my life expanded to make room. When my limits dissolved. When I became more patient and more sympathetic and more understanding and more empathetic then I had been.  

When I wanted to get to know him.

So by the time that phone call came, there was nothing left to change.  I already knew him. His quirks. His obsessions.  His inabilities.  His limitations.  His loves.  

Tidying it all up and packaging it with the bow, presenting it as a diagnosis…didn't change a thing about him.  

And what it's taken me till now to realize, is that it didn't change anything about me either. 

Up until now, when I shared this story…our story…I always believed that it was the defining moment for me.  That it was this supercharged catalyst that altered my course and made me who I am.  

And I was wrong.

Oh, so very wrong!

That moment didn't bring about change. That moment brought about fulfillment. Fulfillment of who I had chosen to become. Fulfillment of my promise.

It didn't alter my course. It didn't upset the balance. And now, over a decade later, I can acknowledge that it didn't even change my life.  Because from the moment I became a mother...his mother...I had been growing into this anyway. 

There are no certainties. There are no absolutes. There are no unbreakable promises. 

Parenting isn't some roll of the dice in which you are either lucky or not.  A typical child. A special needs child.  No guarantees. No hard and fast set of rules.

I am the mother I am, because I am a mother.  Not because I have a special needs child.  Not because things did not go according to plan.  Not because of some defining moment in his life.

No.

I am the mother I am, because I am a mother. His mother. 

It's a chain reaction...motherhood.  That spark sets it off. He grows, and therefore I grow. I grow, and therefore he does. He learns and our world expands. I try and our world deepens. 

So you see.

"The more things change, the more they remain the same"

He's newly 12 now...barely begun in this year...  Taller than ever before.  I'm nervously observant of his height.  Worried for the day when he is taller than I.  Worried for "the change" that might bring.  The signs of early adolescence are showing themselves.  Every day he's becoming a bit more himself.  Looking at his face across the dinner table, I can see the fast forward into the future. I can see previews of the man he's becoming.  And the hopefulness and pride is all twisted together with grief and loss as he leaves boyhood behind. 

Change is in the wind.  Adolescence knocks at the door.  He will change.  There's nothing to be done. No stopping time. No holding on past the limit.

He will change.

And I will have to change as well.

I will have to change into the mother who lets go...

Terrifying.

Acknowledging the necessity for change is terrifying. 

Allowing for change is terrifying.

Where is my future self, to tell me every little thing will be okay? Where is she now, that she can look back with hindsight and say that what I am afraid of now will prove itself in time to also have been, not change, but simply growth-fulfillment…

If only it could last. If only these precious moments could expand into eternities of their own.  If only it could all stay the same.  

If only the wind would change…

...the 12th of never and other days worth waiting for...

...to myself, when all of this was new and oh-so-scary...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In days and years to come, these moments will just become another part of the story.

So just for now, it's absolutely positively okay to melt down a little in them.

You can take a little while to feel the shock and the anger and disappointment and the fear. You can go a little crazy inside your own head, and feel more than a little lost. You can laugh and you can cry and you can rage. 

Go ahead. Do it all. Let it out and get it out.

Because I promise you, by tomorrow none of it will seem as grim as it does today.

So give yourself those 24 hours… They're part of the story too. 

And when you wake up, you'll see that just because everything's changed doesn't mean that anything has changed. 

You're still you. He's still him. You're still exactly who you were supposed to be. And so is he. A name -  a diagnosis doesn't change the people.  As time goes by, you'll learn that and you'll live that.  That scary phone call didn't really change anything. It just provided a framework for what had previously been unstructured.

And I promise you, 24 hours later, you'll get that. You'll get right back to your regularly scheduled programming and you'll breathe, because everything is the same and everything is different and that's exactly how it's supposed to be.  You'll see him outside, playing in the pool, and he'll be who he was and who he is and who he'll become…

And in that very moment…that one…you'll realize that you are now what you were always on the path to becoming...

Have faith. Breathe.  Look at him and believe that "every little thing is gonna be ok".  

Because that's what you did.  And that very doing is what made me...

The days are going to go so slowly.  You're going to feel as though you're drowning in the details.  You're going to worry, all the time. You're going to panic about things you have no control over. And you're going to stress out about things you can't change.  But I know you. Even in the midst of all that chaos, you're going to spark something miraculous...you're going to look for happiness in every single day. And you're going to find it.

The days are going to go so slowly.  You're going to be so busy.  You're going to square your shoulders and unleash your stubborn side.  You're going to scoff every single time you hear the no.  You're going to devour every bit of information you can find, and try every suggestion.  You're going to build an entirely new relationship.  You are going to create a team of two.  

The days are going to go so slowly.  You're going to be lonely.  You're going to be tired.  You're going to be hungry, and cold and sick.  You're going to go "without" for days on end.  You are going to suffer.

The days are going to go so slowly.  You're going to savour moments.You're going to photograph everything. You're going to feel pride like you never dreamed possible.  You're going to revel in successes.  You're going to learn that joy is measured in its counterpoint to the sorrows.

The days are going to go so slowly. But the years? They will fly by before you can get your bearings.  You'll see them flash by before you know what you want to do during them.  You'll try to fit it all in and fail.  You'll have to-do lists that never get done.  You'll feel an overwhelming sense of panic bubble up when you count up how much time is left and realize it will never be enough.

As those slow days and those fast years become a part of your story, all the no's will become yes's.  And all those little things and big things you were afraid to hope-wish-dream?  They'll surprise you by coming true.  Life will unfold in ways you never saw coming and you'll realize that was always the plan.

Before you know it, you'll be here. At exactly this point on the timeline.

You'll be me.

You'll be me and he will be turning 12. You will cut his hair in the kitchen, while he plays Minecraft on the iPad.  He will be so immersed that he won't even notice you've chopped off five inches. A spring shearing.  He will be miserable when you give him the mirror.  Because, without those five inches, he's afraid he doesn't look like you.  That teary-eyed declaration will make you glow a bit on the inside.  Hold on to that. Enjoy that admiration and adoration.  It's due. 

You will be me.  You will feel a little bit dazed as suddenly everything seems to be going so rapidly.  You'll be overwhelmed by all the achievements as they crowd together.  You'll cheer him on from the sidelines.  You'll sign his report cards. You'll sit in the audience. You'll stand in a museum and admire his exhibition.

You will be me.  Your heart will clench when you look at him and the little boy is gone.  You will miss everything that was.  You will sadly realize that the door has closed and now it's all in the past.  Your heart will break a little bit.  But once again you're going to square your shoulders and unleash your stubborn side.  And you're going to become the next version that you were always meant to be.  

So follow your own advice, and live it exactly how it's coming at you.  Let it push and pull and mold you.  Let if define you and refine you.  Make choices.  Make mistakes.  Make it last.

This is your story.

 This is my story.

  Let's live it in a way that makes it worth telling…

Down for the count...

Another week come and gone, and here it is Friday once again.  

It's been a mess of the week here for us.  Mister Man goes through cycles (I refer to them as A(autism) and B(better) days)  periodically, based on all sorts of sensory triggers.   On B days, we're out and about, busy as bees.  But on A days we're just barely getting to the basics.  He becomes extremely emotional, often times very depressed… and has major sleep disturbance issues and problems with daily functions.  Often times these periods hit with little to no warning, and then it's just a matter of hunkering down and getting through it.  On rare occasions I can see it coming…my Mami  senses start tingling!  And of course 10 years in, I know there are certain triggers which are guaranteed to set him off.  

One given is any sort of extreme temperature.  Here on the East Coast the weather has been horrendous...humidity and heat are the defining characteristics of an East Coast summer, but this past week has been off the charts.  Air as thick as pea soup...allergens enough to be visible...and the temperature, oh, the temperature.  Step outside and boil from the inside out!   Even with the air conditioner running 24/7 on full blast, the inside of our home has maintained above 85° day and night.  Mister Man is miserable, dysfunctional and whimpery...and my bag of tricks is proving inadequate.  

Homeschooling this week has been a joke. It's accomplished little more than make us both even more ornery than we were to begin with!  One positive note in all of this is that last week we finally made it through our chapter on division, and one little boy is absolutely delighted to be done with it!  While he generally loves math, and is very advanced and capable, let's just say long division involving hundreds and thousands is not his forte!  This week we've moved onto rounding and estimating reviews, and decimals.  One new strategy I am trying this homeschooling session is allowing him to use the iPad for his creative writing.  Handwriting has always been a problem for him. Rather then waste the time that it would take for him to handwrite out a short story (an excercise in futility) it makes much more sense to me to allow him to use the microphone feature and create a word document.  We can tackle the writing dysgraphia in other ways, without interfering with the creative process.  Of course the microphone presents problems in and of itself.  Because he tends to speak quietly and not very clearly, the microphone transcription has written some very interesting babble.  So in that regard, using the microphone is almost like a speech-therapy session. He has to work extra hard at enunciating his words and speaking in concise sentences.  And he has to think out what he wants to say in advance, before pressing the button.  The first few days using this method were definitely challenging, but I feel as though we are progressing nicely.  His current story is really filling out quite well.  

As for me, my allergies have been wreaking havoc on my whole system.  About eight or so years ago I started getting this strange eye swelling thing. The very first time it happened I woke up in the morning and my eye was swollen shut. It looked as though there was a golf ball behind my eyelid.  The whole thing itched like crazy and it looked as though all the fluid in my tear ducts just backed up.  Over the course of the next few hours the swelling went down completely.  In the months following, this continued to happen about twice a week. Coming on overnight and disappearing in a few hours.  I tried allergy eyedrops, and even tried changing the allergy prescription I take every day. But to no avail.  About a year in, I noticed that it was happening less frequently but the symptoms were lasting longer.  And before the swelling set in, the area around my eyelid would itch horribly.  Fast forward to present day, and now it happens much less often, but the symptoms stick around for days. And instead of my just noticing it affecting my eyes, it seems as though my whole body is having an allergic reaction.  Years ago when this first started happening, Mister Man told me I looked like a one-eyed snake monster...because clearly it was incredibly disfiguring.  What can I say?  That description stuck in my mind. So now every time it happens, I not only feel unwell but also have that phrase running through my head!  Talk about feeling insecure!

Hoping for a weekend reprieve...

~Leanna

...beyond the pale...



Everyone dreams.

The kings and queens, the migrant workers...the average caffeinated confessor.

Everyone dreams.

And for the most part every one of those dreamers wakes to a reality quite different from the fluff and fiction in dreamland.  The dreams of youth vanish into the ether of adult responsibilities.  The dreams of newlyweds alter as romance meets reality.  The dreams of mothers-to-be mildew with soggy diapers and spit-up-stains.

 And somewhere along the way the dreams begin to change.  The young adults begin to dream of home-ownership or promotions.  Newlyweds dream of vacations to capture those lost moments of romance.  Mothers concoct daydreams of uninterrupted sleep, or sipping coffee while it's still hot. 

The dreamers remain...though their dreams may fade and dim...

~~~~~~~~~~~~~~~~~~~~~~~

When we are young we plan for the future...or so we think.  We announce to curious relatives what we want to be when we grow up.  We proclaim to guidance counselors what our passions are.  We make lists of our youthful strengths and weaknesses.  We choose schools based on who we think we are...at 17.  And very often, we have it all figured out before it can even begin to exist. 

~~~~~~~~~~~~~~~~~~~~~~~

Growing up as an adoptee certainly impacted my sense of self and identity.  I did not have genetics at my disposal.  I couldn't look to my mother to see where my skin-colour came from...or find in my father my scrawny build.  Rather, I was afloat.  If someone picked on me for my large nose or pointed out my dusky complexion, I had no defense.  There wasn't a 'team' behind me of relatives with the same bony elbows or long toes.  This odd assortment of genetic particulars that made up a whole me was wholly unrelated to anyone around me. 

How I longed to be an average.  If I could but blend in... 

And I was curious.  Curious but unwilling to admit it.  Curious, but not wanting to ask...for fear of hurting the feelings of those who had raised me...for fear of seeming ungrateful... 

So I kept that curiosity silent.

The summer after my senior year I met my birth-mother.   I met half-siblings.  But that's another story.

This story is about what happened when the curious girl grew up.  Because this story is mine, not theirs. 

I married young...comparatively.  The majority of my friends from high-school and college are still unattached.  Single and childless.  I jokingly describe myself as being on an accelerated path...first to marry, first to parent, first to... 

Clearly if you've been reading along this blog of mine you know how that chapter ended.  The new chapter is Single Motherhood. I'm not sure if that's a chapter...or the whole book.  Perhaps what went before was simply the introduction.  At any rate, that's my moniker these days...Mrs. Single Mami.  And it fits.  As the parent of a special-needs child I've knowingly and willingly made the choice to delay my own life in favour of being hands-on.  Gone are the dinner dates and girls-night-outs.  For now the payoff is more than worth it.  My son's autism diagnosis has gone from the grim and gruesome "Severe"  to "High-Functioning" in recent years.  We've developed quite the team...the two of us against whatever comes our way.  "Go Team W.!"

But this life...all of its challenges and rewards...has come at a price.  The dreams I had as a young adult, a newlywed and a mother-to-be have hit the recycling bin in order to create this piecemeal existence.  There are little bits and pieces here and there that I can still almost identify.  But the daily grind has done its job admirably...polishing out the unnecessary and unattainable. 

Until, that is, someone or something comes along to remind me of an old dream. 

It seems this past year that the universe at large is conspiring against my created peace of mind.  Time and again I'm reminded of who I was and what I wanted when I got married.  That whole curiosity thing?  Rears it's ugly head again. 

Because you see, what I wanted desperately was family.  Lots of family.  A way of making up for growing up without.  I wanted more children.  Not just one.  Not just this solo solitary one.  I wanted a whole house-full of rambunctious little people with my dna stamped all over their faces.  I wanted to see what I was made up of imprinted in the little children I dreamt of.  I wanted a daughter...at least one...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm content...for the most part...with this one child.  He's just miraculous enough to fill my mind and push out all those other dream-children.  And the reality of him easily outweighs the fantasy of any others. 

I'm the first to declare that this may be the limit.  This good may be the best there is.  This may be the whole book. 

But time and again, someone will come along and suggest or hint or ask..."Don't you want more?"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Playing on a two-man team,

~Leanna

...tame or wild...

We received quite the outpouring of support last week via texts, calls, emails and comments in regards to this post about bullying.  I'm so very grateful to each and every one of your for your concern, love and suggestions.  I'm glad I didn't stop myself short of writing and submitting those words...they were genuine expressions of how I truly felt and continue to feel.  I'm sickened by the way some children behave...and by the seeming lack of concern or involvement their parents have over what I deem troubling warning signs.  To be forced into the position of having to teach my special-needs 8 year old child how to defend himself against physical attacks goes against everything I want him to believe in.  And to have his view of education colored so negatively by these attacks angers me more than I care to admit.  He is such a bright and curious child with such and aptitude and thirst for learning...I absolutely hate watching that wither away in the face of these bullying occurrences.

It's important to me though, that I follow up with all of you and let you know how things played out.  After my phone call to the school, they followed their established protocols and interviewed Mister Man in a roomful of adults.  After establishing his side, they then did the same with both the girl who had attacked him and a classmate of Mister Man's who witnessed the event.  Apparently the girl went the foreseeable route and lied about the whole thing.  But the classmate's version matched Mister Man's, and the principle and staff made it clear they believed him.  So the girl in question lost her recess privileges and had to write an apology note to Mister Man.  Additionally, Mister Man's seat was moved to the back of the bus where he is now surrounded by 5th grade buddies as an effort to protect him. 

Ok, fairly cut and dry.

A few problems though.

1)  The apology note?  I'm not sure if it was scripted or prompted or actually written out by the girl herself, but good gosh the wording was kind of scary.  One line in particular threw me off... "It's just sometimes I lose control of myself. I get mean.   I don't know why." 

 Ummm...really?  Did any of the school staff read that???  Considering last year's temporary expulsion nonsense that we went through, I'm suprised those words made it to our home.  I don't think I'm over-reacting in my response...that statement give cause for question.  I'd take a long hard look at that child and send her off to the guidance office for starters.

Losing Control?  Getting Mean?  Not Knowing Why? 

Keep her away from my son.

2) Forcing a bunch of 5th graders to essentially babysit my child on the bus?  Yeah, that's gonna go over superbly.  Let's face it people, 5th graders consider that bus ride social hour.  You've just succeeded in making my son an inconvenience to them.  Oh, and considering his autism and the massive social/communication issues he has...way to go, you've just thrown him into a virtual lion's den of communication.   He has nothing to offer in 5th grade experience, and he feels the difference. 

Brilliant plan there.

3)  Really?  She loses recess for a few days?  For striking another person repeatedly with a metal object?  Last I checked that does actually sound like physical attack with a weapon.  Metal hurts people.  It leaves cuts and bruises.  And it's scary...being attacked unprovoked.  So losing recess?  Yeah, not exactly a punishment to fit the crime.

Now listen, I realize that in reading this some of you may be shaking your heads wondering why I sound so extreme.  But here's the deal.  Mister Man has been the victim of bullying multiple times over in this school.  I'm thrilled to know that come the end of the school year I am getting him the heck out of there...but in the meantime, he's scared to be on the bus, scared to be on the playground, scared to wait on lines.  And aside from literally standing next to him all day long at school, there's little I can effectively do to make him feel at ease.  That's the school's responsibility, and in my opinion, they aren't even coming close to fulfilling it. 

The day that I had to take my son in hand and physically teach him how to fight back for when flight is not an option, is the day his school failed him.

...if it's not one thing...

TGI-Weekend!!!

This week has been killer...if it's not one thing, then surely it's another.  Mister Man had off from school on Monday for the holiday which already meant I had to rearrange my usual work-week schedule.  Tuesday morning at the crack of dawn my phone rang to inform us that it would be a snow day.  Mister man?  Delighted!  Mami?  Stressed out!  By Wednesday afternoon I was falling victim to the bug Mister Man had last week.  And Friday's snow day repeat only added to the mess.

Waaaaaah! 

So here I am...beyond belated in posting, well, anything.  My head is all poundy and dizzy, my nose is all stuffy, and I swear if I look at anything for to long it starts swimming across my vision. Ugh!

The good news?  I wrote down my daily TTP posts in my carry-along journal.  So if and when I catch a real break this weekend, I can get around to posting them. 

In the meantime I encourage you to check out some of the fabulousity over on my blogroll.  Yep...go ahead...go read somewhere else...cause we both know there's nothing of interest to read here right now!



...compromise is a dirty word... (back dated post)

No. Really. It is.

The very act of compromising is based on giving in, giving up, or letting go.

Yeah, yeah, I know...it's all for the greater good and all that. Compromise is touted as the great mediator, the final resolution to end all disputes. People seek it out when conflict is getting the better of them. Corporations pay big money to hire fancy lawyers to make it happen at any cost. Even friends and families find themselves living in a flux state of day to day compromise.

Face it: In this 'modern age' of ours, we're handing in our wishes and dreams for a daily dose of compromise and not even counting the losses.

(Let me be clear. I'm not completely knocking it. There's plenty of dirty words out there that can be quite useful, possibly necessary and maybe even a little fun!)

Anyhow, getting back to the point...

Compromise is definitely another tool in our arsenal of social interactions. It's in there with all the other communicative devices: tone and eye contact and proximity. It's a way of making someone else feel heard, and understood and validated. Unfortunately, unlike some of the other tools like laughter and smiles...the implications are not so obvious. Honestly, the darn thing should just come with a warning label. It's got some major consequences after all. Something along the lines of:
"will directly cause some degree of disappointment"
or
"grand potential can become diminished by frequent use"
could be helpful. If people only knew that compromise is just a fancy way of saying 'trade in your high hopes for mediocre ones' I seriously doubt they'd be so eager to reach it.

The reality though is that we are raised to be compromisers...not fighters. We chasten the bickering toddlers and tell them to share the coveted object. We harp on the teenager to at least complete half of the assigned task. We cajole our employees or employers into giving in to constraints or expectations. We even strive for the 50/50 in our relationships.

When did it become ok to stop scrapping for what we really want out of life?

And when did it become ok to trade in hard work-planning-saving-education (or whatever the groundwork may have been) for only half of the dream?

Go ahead: 'google' it...I'm not the only one who thinks so...

...the shape of things to come...

This week one of my facebook posts asked the question: "Which came first, the autistic 7 yr. old or the insomniac mom". I was referencing our current homefront struggle with sleep issues that has spun a bit out of control this week.

(A little backstory: Mister Man has, throughout his life, gone through periods of time where he won't sleep for days on end. Usually these time periods are also fraught with hyperactivity and hypo sensitivity. It happens sporadically, maybe every three or four months. And I've never yet been able to predict it or tie it down to any one cause.)

At any rate, we're in of those periods now. And let me tell you, having a very active boy still needing your attention and assistance at 4am after an already long day can be a bit hard to take.

I've had to modify my old approach from when we lived alone in Ohio, to suit where we're currently at...but feel free to picture us camped out on a stack of fluffy blankets, sipping 'Sleepytime' tea and watching 'quiet' movies into the wee hours. For added accuracy colour in the ever increasing purple-black circles under my eyes when I drag myself off the blanket-bed in the morning and grouse my way to a cup of coffee!

I've noticed this week that my former bounce-back-edness is fading. Used to be, I sort of just rolled with the punches. Sure, three days of wakefulness and trying to sleep on the floor wasn't fun by any means, but I could do it and still function.

This time 'round though...ain't a-happenin'! My whole body is feeling the lack of sleep and cushioning! Muscles ache and burn, my head is dull and roary, I'm clumsy and forgetful. Ugh!

Meanwhile, Mister Man is a veritable ball of energy and life running circles around his speed-aging Mami. :(

-----

Cutting to the chase here and actually breathing life into this blog post's title...this week's sleeptime shenanigans have me wondering about this whole parenting thing. Who's doing the shaping and molding here? Is it the parent who consciously chooses to direct and guide her child....or is it the child's very existence that alters a life from one course to another?

Certainly I can look at my own experience and find examples to support both hypotheses here...but my question goes deeper than what I am able to offer up. Who is being germinated here...the baby/child/young man/adult that I am raising, or the mother/employee/friend/woman that I was/am/will be.

(See? Confusion! Hence the need for backslashes!)

Used to be that the subtitles under my name were defined by what I had been working towards. Singer. Dancer. Actress. My young years and even my young adulthood were spent in a whirlwind of activity...every moment working towards what I wanted to become.

Little did I imagine at the time that something as simple as meeting my now ex-husband could knock me so far off course as to change my final destination completely.

Fast forward through all the grim and gruesome (and sometimes glorious) to the present and you'll find me a woman whose main focus involves her identity as a parent to a special needs child. Certainly I owe a great deal of credit (for my self-perceived success in my current role!) to those skills I cultivated as a young person. My creative side is the sole basis for how I approach challenges. And my love of the arts helps bring joy to the direst of circumstances. But all that acknowledged, I can say without a doubt that this is not the life I envisioned when I was young.

Motherhood has changed me. Therefore my mothering has changed. The parent I might have been is not. And it's not a static existence in this mothering aspect. It's as though the parameters are malleable...outside influences wend their way in, causing minor changes here and there, and further down the line I am something else.

Just as important...motherhood has changed me...in all areas of my life. I am a different friend/employee/person than I was.

My real curiosity is this...having noted the changes that have already occurred in these 7 years, who am I becoming? What other changes loom on the horizon?

And...how much of it can I hope to control? Do I have some hand in my own future self? Can I take in the reigns of destiny and declare who and how I want to be?

(Note: I believe I can. Let's see what happens.)