...tenuously tethered...

There is both shame and serenity in realizing how insignificant you are.

Both exist, in equal measure.

Shame: of self, of purpose, of effort, of...hope founded in the unfulfilled need of the inner child.  Shame in the wounds both caused and suffered, and the map of scars left behind.

Serenity: of...permission to detach, of finding the bottom and finding yourself still standing, of...hope unfettered.  Serenity in the familiarity of the scars that knit you together.

The understanding of how very little you matter,

sometimes even to those who matter to you,

can blaze up suddenly...

and make cinders of all the formalities...the constructs...the obligations...

The understanding of how very little you matter can reveal itself in the smallest of moments...

an unmasked glimpse...

a careless turn of phrase...

a single photograph...

Like both a gut punch and a full breath...somehow, caught in the same moment.

Despair and deliverance.

Shame and serenity, in equal measure.

A 'putting in place'.

A relinquishment of responsibility to reparation or relationship.

That moment, suddenly there, where before there was angst and hesitation...

That moment...as though someone has unlocked the door on the gilded cage..

saying "you are free to go"

saying you are free of the cage

but

also

saying you aren't special enough to want to cage...to enclose...to keep...

saying...

you aren't important enough to take care of.

It is the very essence of bittersweet.

Realizing...

as you move through the shame and the serenity...

that you need no longer make yourself available...

that you can leave the door open, without also standing in it as guardian and greeter...

The understanding of how very little you matter,

sometimes even to those who matter to you,

is a lesson well learned but hard earned.

It's recognizing that 'the ties that bind' don't...

it's realizing that roots once severed grow divergent from one another...

it's resolving to be in the now...

It's moving through the shame and into what waits beyond it...

It's finding serenity in the present when we stop trying to fix the past...

It's cutting yourself loose and plotting the course without being swung by the weight of responsibility.

...slow down...

While my faith is of great importance to me, I have found in adulthood that a centering around the idea

~what's for me will not pass me~

has served to bring me more peace and hope then I find in my religious practice. 

(I grew up in an exceptionally conservative household in which God was, in many ways, weaponized against the very natural experiences, questions, and expressions of childhood and youth.

While I consciously, even now, reject that fire and brimstone, I find myself forever branded the disobedient and disappointing child of an angry Father. My relationship to my God and to my religion is one in which I struggle to find peace, acceptance and comfort.  Yet try I do...

But that is for another conversation.  One that I don't think I'll ever have in this space.)

Having gotten that 'out of the way'...

The point, I suppose, is that I put a significant amount of stock in the moment of clarity when something meaningful crosses my path.  I am a collector...a saver...a screenshot for remembrance sort. My gallery full of clippings to remind me.

Books to put on hold at the library.

Recipes to tailor.

Upcoming events and interesting locales.

Educational toys and household items I didn't know I was missing out on.

And words.

Words that zapped me like a bolt of lightning when my eyes lingered for a moment longer.

These words:

Slow Down.

In particular, a post that crossed my feed.  A total stranger.  Unknown, because I cropped the screenshot to just the words, before saving it.

"Let your child(ren) see you slow down."

Let your child(ren) see you rest when rest is needed...relax when overwhelmed...seek solitude and silence when the volume is too much. 

Let your child(ren) observe you care for yourself as well as you care for them.

Let your child(ren) learn self-care by demonstrating your own, and they will be better for it.

Let your child(ren) see you slow down whenever and wherever you need to, and they will learn to do the very same for themselves.

This, friends...

Is wild.

Is novel.

Is...dangerous?

Slow down?

But...all the things...all the balance...all the emergencies...

Slow down?

And, what?  Watch it all fall apart?

Or maybe...

Slow down, and gradually set it all somewhere safe to pick back up once you are fully rested...fully recovered...fully recharged.

Or...

Maybe...

Slow down

and

Set it all somewhere safe

and

Only pick up what you can handle...what you want to handle...what you choose to handle.

The rush isn't actually getting me anywhere faster.

The chaos isn't adding function.

But the quiet of a few minutes with coffee and a good book?

The pouring into self before draining into others?

The sleeping until exhaustion is appeased?

The corner seat with a blank screen to write it out?

Oh?!?

Yes.

Slowing down.

Teaching myself and my child(ren) of the value in slowing down and finding rest and recovery and reassurance in the silence of stillness.

This.
Was meant for me.

This.

Will not pass me by.

September is for Slowing Down...

and finding myself anew amidst the detritus that sloughs off when my constant motion comes to a stop.

 

...on giving in rather than giving up...

"Ugh...I give up!", said my eldest this afternoon, whilst trying unsuccessfully to wrangle his little brother into lunchtime submission.
"No, you don't!", said I in response...somewhat harshly, mostly garbled...mouthful of salad.

It was a matter of one bite.  One singular bite of leftover hamburger, positively drenched in ketchup.  One bite, and an overwhelmed three-year-old, and the forkful he found absolutely impossible...impassible...for his little mouth.

Because...you see...there was a drip...
A drip of ketchup hanging from the bottom of the fork.
And Henri?
Does NOT tolerate anything on the bottom-side of a fork.

This is part of the current regime.  The current monarchy of three-dom.

It's etched in stone (at least, for now...), right up there with no squeezy hugs unless he initiates, and no cherries in the fruit platters.

And, because I am taking the time to write about it here, it will become part of the story in years to come...The Who and The How of Henri...

But for today, stone-script aside, it's just another thing to add to the already lengthy list of Henri's foibles and one which, in the moment, feels like a bit of 'abuse of staff' to those of us who serve his every whim.

I motioned at the bottom of the fork, where the ketchup hung down.  Not quite a drip...certainly not a tear-drop shape of crimson...but just...an upside down bump.  I pantomimed scraping it off on the plate, and watched as he did so.

The bite, proffered again...rejected again...this time with the hitching breath of imminent tears.

Several suggestions later (not a one of them a success), the remainder was finally eaten...by my eldest.

Because by then...by the long stretch of inaction and delayed action...the problem had swallowed the whole bite up.

And both my boys were now on strike.

"I give up."

"No."

~~~

How often we are tempted to Just Give Up.

To sink into that pit of hopeless failure and the inaction that follows.

To stop expending energy on a problem that seems unsolvable.

It gets you nowhere...giving up.

You just...stop...you stay...you settle...

And the problem?

It's still there.

And now you're part of it.

Giving in, though...that's something altogether different.

If giving up is putting the fork down and never again picking it up, then giving in is putting the fork down and getting a spoon...or chopsticks...or a cartoon-faced toothpick.

Giving in is recognizing that there's a problem...not with the person, but with the method.

Giving in is allowing for Henri's particular sensory needs to not only be recognized, but to be valued in terms of how we guide him toward success while respecting the boundaries his body and mind have set for the task.

Henri loves a good hamburger.  And by good...I mean a cheeseburger.

A cheeseburger with a perfect ratio of pickle to bite, and the just-right-amount of ketchup per morsel.

He wasn't upset because he didn't want the next bite.

He was upset because he did want it...desperately...but he couldn't eat it as it was...

He was upset because he needed his big brother to see the problem and fix the problem, before the problem swallowed the whole bite up.

~~~

There are things I see now, that my eldest has yet to notice.  Things that are familiar to me, because I've lived through some version of them before...with him...

Raising him...raising the autistic essence of him...was a long drawn-out lesson on giving in and never giving up.  Raising him was, and remains, the daily (moment by moment, rather) practice of giving in to his specific needs in order to guide him toward success.  It is the accepting of his parameters, and adjusting my lessons accordingly.

And so it is with Henri.

I give in, knowing his need for a clean fork-bottom...

I give in, and wait to relish the moments when he squeezes me round the neck...

I give in, and remove the cherries...

Giving in is the gift I give him...letting his needs and his preferences hold space...hold value.

Letting him hold space and value.

Letting him give in to eating the burger without giving up.

...reclamation declaration...

Well, here we are...at the actual eleventh hour...
Tomorrow is my birthday.
And today has been...challenging.

Birthdays as an adoptee are...weird.

No other word will do.

It's part "Hey, let's annually remind you of the day your very existence was someone else's biggest problem or dirty little secret."
With a sprinkling of "Happy reminder of how your own mother didn't want you."
Mixed with a rehashing of the very trauma of adoption and being reared by people who, in order to get the happy-ever-after,2.5 kids-and-a-white-picket-fence that they think they are owed by life, contractually purchased a human being and then proceeded to erase its very identity in order to imprint themselves onto as empty a vessel as possible.

Birthdays as an adoptee are weird.

They aren't the invocation of oft rekindled memory...of how a family grew...of miraculous first breath...first coo...first cry.
They aren't founded on a mutual memory at all.
They are...in fact...the anniversary of 'what came before'.
What came before the bond was forever broken.
What came before the spirit was forever wounded.
What came before the child was forever traumatized.

Birthdays...my birthdays...

They are the mocking calendar notation that reminds me of how inconvenient and undesirable I have always been.
They are the remembrance of abandonment and the ever-present fear of being rejected.

Birthdays wake up the voice I've always known...that lives down deep inside and never misses an opportunity to tell me I am nothing but someone else's discarded trash.

Birthdays are rife with expectations of others.

The expected cheer.

The reminiscing.

The ghastly simpering over the false narrative of an existence that was artificially constructed on the ashes of who one was at birth.

Birthdays are supposed to be...happy. 

But what of those of us for whom a birthday is triggering?

What of us?

What should be done about those of us who inwardly cringe at the greetings or gifts?

I know the answer.

I've lived it all these years.

We're to tamp it all down and plaster smiles on our faces for the comfort of others.

We're to ooh and ah appropriately.

We're to fill our empty shells with the personification of a rooted, whole, fully realized child-come-adult and pretend that the family stories are ours to claim.

I'm supposed to feign happiness.

Fake it till I make it.

I'm not supposed to think of her.

That...creature...

That...problem...

I'm not supposed to pull on the thread of my very being that leads back to my maker.

I'm not supposed to acknowledge that there was ever a 'before'.

I'm supposed to only begin when I became theirs.

But here's this date...on the calendar.

A date that came from 'before'.

A date that holds...depth...weight...a figurative black hole of substantial 'before'.

A date that holds my very dna...my very construct.

A date that belongs:

 to the person 'before'...not to me, but to her...and to it.

To it.

The shame of my existence.

The shame of my conception.

The shame of reality.

To it.

She who shall not be named.

She who the meeting of, nearly broke me.

She who the manipulation by, did break me.

To it.

The dumpster fire.

Birthdays as an adoptee are weird.

~~~

So I'm not having any more of them

~~~

Tomorrow, I'm turning one.  

Tomorrow, I'm celebrating my first birthday.

Because...

I created myself.

I gave life to who I am and to what I have built.

I'm turning one because this is my year to heal.

This is me healing.

Choosing to start from where I start.

Choosing to claim myself.

Choosing to celebrate the person I reared myself into becoming.

Choosing to reclaim this date.

Choosing to dig deep and plant my roots...the ones I had to slice deep in order to propagate.

Tomorrow, I'm celebrating...for the first time.

It's my first.

My first to wake with anticipation.

My first to genuinely delight in the notifications and messages and calls.

My first to make a real wish and believe it can come true as I blow out the candle.

It's my first.

And it's moments away...a tick tock of the clock as the midnight hour chimes...

My first birthday.

I'm happy.

...phone a friend...

 Clarity, these days, seems hard to come by.

Whether it's the sleep deprivation or the 'crisis management mode'...or just the gears rusting in this brain of mine...the ability to step back and observe the whole has been lacking lately.
Tracking the unpredictable but perpetual motion of too many balls in the air has caused me to get stuck in laser-focus mode, and I've found myself floundering when it comes to big-picture planning.
Despite lists and calendars and planners and organization...I've been (poorly) jumping from one action task to another, with no attention for the outcome.  It's plugging one hole in a sieve, while the rest pour out unstopped.

Until right now. This very moment.

(Okay, truthfully, not THIS very moment...but a few moments ago, before I thought to write it out here.)

There's an annual phone call I make, to an old...friend.  Weird, that. Not sure what the label is.  Former boyfriend.  Of eons ago.  Long-distance by phone alone...but somehow, connection...to a previous iteration of me, to a shared past, to parts of my experience that only he could understand.  
Ugh...I digress...

(As I do...)

Every year, the birthday calls.  Mine, outgoing, at the end of May. Returned a week or so later when it's my turn to celebrate.  Always a moment of startle in my mind when he picks up and the voice is both familiar and stranger.
Every year a rushed recap...a few laughs...perhaps some insight shared in one direction or the other.
A feeling of normalcy, because so much of what formed me...he was present for.

~~~

The call was a few days late this year.  Belated...my doing.  The birthday fell on a Saturday. I didn't want to interrupt.  And then it was a holiday weekend, and...  So I called today.  And had that moment of familiar but strange all over again.  Always marveling at who we carry along with us.  Forever navigating the momentary discomfiture of...is it muscle memory...or auditory memory that stirs up emotion long passed...

Our conversation the standard sort of catch-up.  His successes and health.  My children.

And in the middle of all that back and forth, there it was:

A reminder of what I already know...but daily forget.

An outside voice...outside perspective...

An acknowledgement by someone so very far out of my focus...that my feelings of alone...solitary...at a loss...are, in their own way, both valid and not.  An understanding of the different path....different timeline...my eldest is on.  And the gift of encouragement by way of his experiential knowledge and singular path to success.  

I'm over here marveling at the 'weirdness' of that.  Once upon a time, I was in love.  Once upon a time, I was deeply hurt.  And here, in the present, we're...friends...of the genuine sort...  And of all the people who could have set me back on my feet in 'this moment in time'...

Weird.  Just...weird.

Thank goodness for the weirdness.

I'd almost called him, months ago, when life took an unexpected turn and the past 'knocked on the door'.  I almost picked up the phone then.  Because he alone knew the players of this particular game...he alone knew how I'd been changed in meeting them.  

But I didn't.

It felt...unfair to unload that particular emotional baggage on a once-a-year phone-a-friend.

I wanted insight...or, guidance...a pointed 'yes...throw in' or 'no, back away slowly'.

What I wanted in those early moments was to pull from the past and have a friend beside me who knew how emotionally attached I was to the idea of birth family...to feeling a part of something... and who knew equally how it nearly broke me. 

There she is...the me of that part of the timeline.  Gosh, she was young and naive.

But that isn't fair, is it?

To dredge up the old.

To call on a shared moment in the past as reason for interrupting the present.

So, I didn't call.

But it came up today.  Unfiltered.  Stream of consciousness...much like I write here.

And in me...a perceptible shift...a sigh of relief to hear a familiar-to-the-original-experience voice remark on the present.  A flickering of 'not alone' in this, too.

~~~

I isolate.

Not news...certainly not new news.

I batten the hatches and shore up the barriers.

I lockdown and work at the problems in solitary confinement...coming up to breathe only once I've found resolution or solution.

No one would accuse me of having healthy coping mechanisms.

I've always had this sense of needing to handle things on my own.

Not be a burden.

A disruption.

An interruption.

Not to cause worry to anyone else over what I might be struggling with.

~~~

But...

This year...

I'm working on healing...

And today, that meant a phone call to an old friend...and opening up...at a comfortable distance of both miles and years...just enough to receive a sprinkling of clarity atop a tangled mess of crises.

...copy/paste and expand...

What follows, in bold, are the words from a recent series of my personal Instagram stories.  Having shared them in that format on a vulnerable whim, I've copied them to here as a 'stepping off point' for further conversation around our family's current situation: navigating young adulthood and social-constructs around success and productivity, disability, support needs and resources....and the ever-unfolding dynamic (complete with seismic shifts) of hope, expectation, and delay.

Just taking a moment to sit with these thoughts while Henri nurses.
That previous slide barely scratches the surface.  Johannes is brilliant...brilliant in ways most of us can't even comprehend or measure.  That's not bragging. It's actually the complete opposite.  It's complaining.
Because high intellect is met, in society, with great expectation.
And in the case of high IQ autistics, that expectation can be devastating.  Because it too often assumes that the individual can 'push past' or 'break through' the very real limitations of his disability and somehow, miraculously, 'behave' as a neurotypical.  It casts them in the light of failure if they aren't 'making the most' of their intellectual gifts and potential within neurotypically-designed/understood parameters.

Since the very earliest days of Johannes' public-school education, it was recognized that he was 'gifted'.  His mind is a wonder to behold. Conversations with him on most any subject take to staggering heights and glorious descents.  His capacity for data...for knowledge, is...beyond.  And his ability to reason and extrapolate and expand upon that data is limitless.  I often think of him as the ultimate problem-solver.  His mind takes a problem down to all of its basic elements and then forms a string of sequential 'fixes'...all innovative, all reasonable but not necessarily probable...  He's able, at a moment's notice, to draw from anything he's taken in (read, heard, seen, experienced, etc...) in order to extend the dialogue into unexpected areas.  

He is, as I have often said, the most interesting person I know.

He is 'gifted'.

He is also disabled.

(As my personal "editor in chief", he has approved the above use of terminology.  But...and this is big...we don't tend to use that phrase in that manner, because language is nuanced and language around diagnosis and disability has been so misused in society.)

Neither cancels out the other.

Disability, or, rather, the specific support needs he has, are wholly separate from self-or-intellectual manifestation.  They are not 'over-ride-able' or 'dismissable' or even 'set-aside-able'.  They are part of his core-processing system.  

To imagine that logic and reasoning can somehow overturn the basic coding of neurodivergence is...laughable.  And yet, that very notion has been a constant.

Because, you see...

...he's 'gifted'.

Gifted: given something 'extra', exceptional

And...

Exceptional means...

...the rules don't apply.

???

Wait, what?

So heading back to the above....from the beginning, he was singled out as 'gifted', as exceptional...and therefore as someone to whom the rules wouldn't be applied.  The fight for services and supports was bitter and bloody...an ongoing battle whose #1 casualty was always, always his self-perception...his confidence.  Both sides manipulating language and diagnostic terminology to suit their end goals.  Far too often, the 'path to IEP' was littered with shame.  The 'team meetings' we had here at home, strategizing how to utilize specific anecdotal evidence of support needs while utterly ignoring his many, varied strengths and skills...  The conversations, ongoing even now, in which I repeatedly told him that he would have to listen as 'so called experts' defined him by terms that never, never applied to him...broke him down to a series of deficits and problems to solve and useless, rote 'skills' to drill. 

He was gifted.  He was exceptional.  He was...an exception to the expectations.

He was...in fact, expected to intellectualize his way into neurotypicality, one AP class at a time. 

And here we are...some 10 months after graduation...

And he remains gifted.

He remains exceptional.

He has, in 10 months' time, been living an exception from the expected.

Because he didn't matriculate at the Ivy Leagues as expected.

He didn't fast-track his way through freshman year to an internship.

He didn't submit his first prosthetic design for consideration.

He hasn't yet recovered from the battle.

And he hasn't miraculously intellectualized his way into the neurotypical life with all its functioning requirements and demands. 

Creating an environment in which Johannes can continue to learn and grow...using both his talents and his passion...to build his own best life, is an ongoing challenge.

There is no structure in place, now that he's graduated.  There's no daily responsibility to show up for...no grading system in place to carve out the failures and successes.  There's no desk at which he sits and performs the exercises of ongoing education, because the areas on which he's working...studying....applying...aren't found in textbooks.

He's learning how to be exceptional in a world that's built for the unexceptional.
And he's breaking himself into pieces, trying to mimic the habits and skills and routines of neurotypicals. 

And, frankly, so am I.  Because the support system...is me.  The support person...is me.  The daily living skill driller...the calendar...the timer...the reminder...is me.  The office manager and social media director for his business...is me.  I handle the books and the schedule and the stopwatch on every project, every proposal, every venture.  I am the clock. I am the (sometimes, hopefully) stable ground.

It is a full-time job.  The "managing" of this talent.

A full-time job squeezed into limited seconds...minutes...never hours... 

Because I have other children...other responsibilities...other jobs....all of equal importance.

And, in what's perhaps the most important piece, it's completely unpredictable. There's no guide.  No applicable rules or schedule or system.

There is just whatever each day brings.... incalculable stimuli and overwhelm...and the ongoing need for ever-reversing, ever-evolving response. 

~~~

Watching his former peers 'moving on' in their freshman years is a heartbreaking lesson in this parenthood...of managing my own expectations and wishes, of reordering my life around his very real and present ongoing support needs, and of not experiencing what is the norm for so many others.

It feels like an end.  A death of a dream. 
Even though it's not. 
It feels like everything we both worked toward was just suddenly ripped out of existence.

It does not feel like a postponement.  A 'gap'.

This gap year feels like failure.

Because it's not, likely, just this one year.

The assessments I have to do as his parent and his support person have made it very clear that he is Not Yet Ready...and that feels like a crushing blow.

It feels like the road to a bright and beautiful future just hit a dead-end.

Feels.

Feelings overrunning fact.

Feelings, with roots in the fear center of motherhood, that have been allowed to fester and run wild. Feelings that find red flags and justifications in the minutiae of daily life. 
Feelings that drown out hope.
Feelings that cloud my judgement.

It feels like an end, and it is.

An end to this particular chapter.

This first-10-months-after-graduation chapter.

The next page is...blank...

And that is just as terrifying.

The lack of characters and lines conjuring up insecurity and doubt.

Johannes and I are in a very different season right now.
It's been challenging.
It's been devastating.
It's been beautiful.

We move in colliding circles around each other daily...never too far from the other.  The points of intersection wearing away like friction burns as we both try to scratch out patches of independence.  He, chomping at the bit...wanting to assert his young adulthood and sit as an equal at the table.

Me, desperately trying to shake off my ever-present-shadow and have a single conversation that he doesn't push his way into.

Both of us, at the end of each day, finding comfort in our routines and our silent companionship.

We're learning to find grace in the uncomfortable.

We're learning how to acknowledge disappointment while managing to not emotionally invest in it.

We're learning how to grow a whole new partnership.

Years ago, I wrote of his growing up and growing out in terms of a relay race.  I wrote of how we'd come to the part where the baton is passed, from me to him.

What I didn't realize was that there's a time...extended in our case...where the baton is held by both.

A time where both runners...the one exhausted of effort and the other, just now catching up and hoping to overtake...are equal stake-holders...err...baton-holders.

The partnership...the teamwork...is both a mutual effort at keeping that baton aloft, and a tug-of-war between two runners, both intent on crossing that finish line.  

And most of the time, we're both failing to keep it together.

That friction of intersection?

That tug-of-war?

Daily.

My suggestions and supports so often in conflict with what he wants to be able to do 'by himself'.

His lack of independence or, rather, his ongoing support needs in conflict with my need for him to grab that baton and let me take a slower lap.

More pointedly, his still-constant need of me...a drain on my energy and resources and an interference in attention owed to my other children and my other responsibilities and my own self.

This is NOT what I envisioned.

It's not what I thought we were working toward.

It's not what all those therapies and IEPs and support plans were for.

It's not what those straights As and test scores led me to believe.

This 'gap'...this, between...and after...and before???...and undefined passage of time?

This wasn't expected.

It's become a lesson in pivoting.  In...taking our team out of the race even through it looked like we were in the lead...  In slowing and even stopping our forward movement, in order to assess damages...treat injuries...and readdress the cost/benefit analysis of continuing in the next heat.

It's something else entirely.

And you know what?

It's really, really hard to come to terms with where we're at and what's in the immediate future.  Because I was never planning for him not to overcome.

That's my own crutch.  My own 'reckoning come due'.

It's my 'toxic trait'...meeting each challenge overcome with one bigger and bolder...and in some cases, completely unreachable.

It's NOT ON HIM.

It's 100% my own failure to realize that Effort In does not guarantee Output.

It's my failure to wholly accept that his support needs are the core-processing system...non-negotiables.

It's my own completely inappropriate Great Expectation.

And it's been with me since the beginning...since the first diagnostic test.  It's been the rod in my spine that kept me standing when the rest of me fell to pieces in early days of diagnosis and behavior. It's been the light at the end of the tunnel when my own overwhelm has swallowed me up.

It's been a Friend.

A Saviour.

A Hope.

It's been a lie.

Because there was, in fact, never an Overcoming to be had.

Nor needed.

I never accepted that there might not be a 'breakthrough' and full, functional independence.

I had pictures in my mind...possibilities of 'life after' highschool/college/career.  An off-campus residence for daily support.  A two-family home with regular reminders and assists.  A car service account...a grocery shopper...an automated evening shutoff.

Independence, by way of met support needs.

Hands off...while hands on.

That's Not where we're at.

I never paused in my efforts to acknowledge the very real possibilities of what mothering an adult autistic person might look and feel like.

And neither did he.

We're both taking tentative 'first steps'...wobbling and grasping for support, as we try to plot out not only where we actually are right now...but also, what might come next.

So here we are...scouting out this new territory and trying on hats for size, as we rewrite our team's playbook.

I'm finding myself chafing at the feel of those hats...those responsibilities that I thought I'd have been able to pass off to him 'by now'.  They're old, familiar companions...sure.  They're rote and routine and almost mechanical.  But I am tired of them.  They require energy that I feel drained of right now.  They require me to split myself in two...one side always observing/analyzing/reacting in advance to perceived areas of support...the other just trying to be all the things to all the other people.

I wish everyone else would just stop expecting my neurodivergent son to follow a neurotypical path.

"Silence!", I want to shout.  "Silence. Your unsolicited opinion has no place here."

Silence, please?

Stop forcing your way in. Stop adding the weight of your 'disappointed expectations' to my already overloaded travel-pack.

Yes, he's gifted.

Yes, he's exceptional.

He is all three...gifted, exceptional, autistic...and so very, very much more.

The standard path...the expected, is Not For Him.

And likewise, it is Not For Me.

I wish we could just breathe easy and know that it's all coming together exactly as intended, and neither he nor I need to hit benchmarks of 'normal' progression.

I wish we could.

I think we should.

Let's just do that.

...spring cleaning...

Much as I would like to think that some echo of my former self still lingers, the truth is that this chapter of motherhood has effectively killed her off...and with her, all sense of scheduling, organizing, and planning.

That's not to say I don't still try.  The planner sits atop the kitchen table, full of hastily scribbled "reminders to self" and checklists and calendar notations.  But at the end of every day, the page tells the true story...a few lines of text checked and crossed off in the early hours of caffeination...and then, abandonment.  Each day rolling over into the next, with a growing list of to-dos and want-tos...and, worse yet, should-have-alreadys...

'Twixt toddler-hood and the (now) 20 year old, my days are a precarious balancing act of tasks/goals and chaos control...and that's before adding in the "crisis management" that has been the operating system of recent months. 

Come night...or, rather, midnight and her shadowy sisters, I pause long enough to copy the lines of one day over into the next and shake loose the disappointment-irritation-shame of having failed to accomplish once again.

So here I sit, with planner beside me, full of 'best laid plans' and the traffic snarl of 'good intentions'.

Here I sit, in contemplative silence (of inner self, not surroundings...ha!) marking the passage of days and idly scrolling through my handwritten notes.

Wondering, as always if I'll ever get back on track.

Wondering just where and when and how I got off track to begin with.

And then I hear the hushed murmurs of my two boys, from but a few feet away, where they play.

Two boys.

One young adult.

One newly minted three year old.

Playing with all the wild abandonment of boyhood at trucks and dinos and transformers.

Ah.  Yes.  There it is.  The off-ramp.

Of motherhood.

Motherhood of this variety.

The "drop everything to be in the moment" motherhood.

The "tend to the curiousities" and let the rest fall away motherhood.

The "wear all the hats" motherhood.

The "embrace both skills and deficits of disability" motherhood.

The...

Stop

Drop

and Roll With It

motherhood.

The...pause now to pick up the pieces and wonder if I'll ever even get back to finishing this post motherhood.

6:37 a.m.

...tidying up...

It's a gorgeous day, outside, today.

Crisp and clear...sunny and bright.

The pull of fresh air has my fingers itching at window sashes and doors...the impulse to fling them all open and welcome in the *idea* of spring almost too strong to resist.

It's gorgeous, outside.

But here within these walls, as I pause in the middle of a frantic morning clean up, the bright sunlight highlights all the flaws.  The hairline cracks and chipped paint.  The mismatched touch-ups and faded spots.  The cat hairs and stains.  The fingerprints and finger-paint-prints and nose-prints.

The light streams in from the picture window and draws out dust-bunnies from their dark warrens. It forces its ways in, casting the front rooms into stark relief...multiplying contrast and saturation...drawing the eye to the shabby of our chic.

I've walked away, for a moment.  Taken a time out to stop the rising tide of anxiety.

We've *company* coming today, to celebrate the boys' birthdays.  Company, with a capital C.

C:
for criticizing
for condescending
for comparing
for correcting

And I've taken to the page to exorcise (or, perhaps, exercise) my self-loathing spiral...to step away from the hustle-and-bustle and tousle of rearranging and relocating that 'needs must' when welcoming anyone into our small space.  I've felt the anticipatory panic bubbling up and given myself an 'out' of blank white space and silence for a moment or two...or ten.

Around me, the chaos builds.  A battle of dueling vacuums in the living room.  Drip-drying dishes on the counter. Bin on the floor, overflowing with "clutter": those bits and pieces of daily life that would be scrutinized and sneered at.

Beside me, here at the table, a hastily scrawled 'to-do' list that seems to double in size each time we each set off to complete a task.

So much effort...
So much work...
Just to avert...
No!
Just to minimize the damage of the pointed barbs that will be delivered with such deliberate intent.

So here I sit, breathing in and out...slow and steady...and getting rather heady from the lack of oxygen.  Forcing myself to write it out rather than act it out in slamming drawers and hard-flung doors. Deliberately taking time out to get out...of my own head, of my own way.

It's a gorgeous day, outside.

There's nothing to be done, inside.  Nothing but a quick tidy and rinse. Nothing but a cake to bake (please, oven, don't mess with me today) and decorate. Nothing but a table to set.

Nothing to be done, inside.

Except...that's not true...because Company is coming and no matter what I do, they'll find fault.

 

...headed for a breakdown...

It's been...a minute...since my fingers hit the keyboard in *this space* and I'm not all that sure, as my fingers fly, of where the words will go or what they will decide to say.

I started this year with fresh perspective and lessons learned.

I started it with an end goal, and the strategies to get there.

I started it with a word.

And here I am, start of March, covered in scabs from freshly-picked wounds.

Mother-wounds
Inner-child wounds
Trauma-wounds

February was a whole thing.  A month. 
A slow-motion crash? A journey? A karmic joke?

 February was a bubbling up of things I meant to address...someday, somehow...not now... 

Ha!  'Cause that usually works out so well for me!

February was the stretching of scar tissue and tearing of stitches and the knowledge that my journey to healing was going to involve reliving the past and getting wounded all over again.

February was a month of connection and division.
 Of frantically trying to snuff out both little sparks and raging wildfires.
Of trying to clear all the refuse and somehow compartmentalize each action item despite the impossible tangle of intersections.

February saw my intention to heal and said, "Great idea...so, hey let's go ahead and break you all the way down to your original parts first with a series of completely overwhelming experiences."
And I had no choice but to turn myself over to the process.
This time...opening myself up to the realness of it all...feeling the feelings and poking at the damaged parts...allowing that pain to wash over me afresh...

Because...
Healing means:
   breaking bad habits
breaking down unstable barriers
breaking toxic patterns

Healing means Addressing It All ~ Analyzing It All ~ Accepting It All...

...and only then, Releasing It All and moving forward in wholeness.

~~~

So here is March, and I'm slightly woozy from the wounding and rebandaging.

But I'm on my way.
Little pieces I'd left in shambles are...reconstituting...resurfacing...reanimating.
Little bits of me I'd buried are coming back to the surface, and I'm learning...daily...how to share the beauty of them with my family and with myself.

I'm healing those wounds and those patterns and those foundations.

It's slow...and altogether unsteady...with sudden gaping drop-aways...but it's happening...

Healing.

...tied up in knots...

Healing.

My word of the year for 2023.

Healing.

The literal and the figurative.

The physical and the abstract.

The body and the mind...or the heart...or the soul...or the lost, lonely inner-child still looking for a soft place to land...

It's more than a word, as I'm coming to realize.  More, even, than a change of lifestyle.

It is painstakingly untangling all the mess of all the intersecting traumas, and the barricades and avoidant/reactive responses that I once thought of as a safety net.

Healing is finding that every time I cautiously pull one on small thread to see if I can loosen it and pull myself free, it snags on something else.

Damage spreads, like a hairline fracture that gradually becomes deeper and longer.   The hits leave behind bruises...flesh and spirit becoming weaker and more sensitive.

And housed within one body...one mind...trauma and pain grow in overlapping layers, each spreading out and attaching to others.

The breaking of you becomes the making of you.

Which means, I'm only just now reconciling...

The making of me, will likely require the breaking of me.

Because some of those knots can't be untangled.  Some of them weren't made by me.

Those knots?

I have to just cut.

Cut, and hope that the whole tangled mess doesn't collapse in on itself.

Those knots are at the center.

~the unwanted child~

~the shattered victim~

The hard part of healing is that it isn't just one thing...one piece...one string at a time.  They all pull on each other and fight for dominance.  And the harder you pull on just the one thing that you think you can tackle today, the more you risk snapping that string and breaking the fragile web of safety knots with which, you've surrounded yourself.

So healing isn't easy.

Okay.

I guess.

I mean, if it was, wouldn't I have already done it?

Healing isn't easy.

Or linear.

You can't cram it into the calendar...one date at a time.

Because every step forward is impeded by a pull-back in some other area you weren't ready to acknowledge yet.

Healing is exhausting.

It's insomnia and panic-attacks.

It's adrenaline-surges and trembling hands.

It's forgetting how to form words and feeling your feet step backwards even as you are willing them to cross the threshold.

It's journaling...daily...taking note of every sensory reaction...the length...the aftershocks...and the recovery time.

It's tripping over strings you might have untangled but haven't yet discarded.

It's celebrating one success, but not being able to move toward the next.

Healing is hurting.

Healing is breaking down.

Healing is trying to break things down into smaller pieces, only to have them multiply and solidify and burrow down even deeper.

My healing, right now, is a repeated circuit of picking at one tangle at a time, to see if there are any loose threads I can pull out.

My healing is an exercise in exorcism...as old, unhealed wounds rise to the surface once again.

I'm tired.

I feel defeated.

I want to give up or give in or just settle, again.

Which is why these words are on this page, today.

To hold me accountable.

To dare me to try again tomorrow.

And hopefully...

to remind me, someday, of how far I've come.

...cauterizing the wound...

 The irony is not lost on me that I went into January with a focus on healing...as first my youngest~then my eldest~and now myself (and my partner) all succumbed to the viral Winter '23 virus surge.  Presently, I'm curled up in the recliner, blankets wound about me in perplexing tangles, with a veritable pharmacy on hand beside me.  I'm medicated, and then some, and slightly hazy around the edges.

Yesterday was, among other things, the perfect counterpoint to my word for the year.  It was a bitter reminder of how far I'd allowed myself to fall.  And a lesson, by deed/not word, of what not to do, for my children.  In fact, later in the evening I very intentionally said to my eldest " Don't EVER let one bad thing that happens to you jostle you so off-course that you wind up here." 

Talk about shame...and self-loathing...and...
...terror.

And the self-feeding cycle of all those emotions as I struggled to come to terms with what I already knew...

My focus this year was going to be on healing.

On my terms.

At my pace

In safe, gentle ways.

Was.

But here and now...my hand was being forced without time to process.  I was...sick.

My youngest came down with cold symptoms and eye-discharge first.  Then my eldest spiked a fever, chills, congestion...and pinkeye.  A week later, I woke up with a burning throat and a steadily rising temperature.  Excruciating throat pain with every breath...post-nasal drip...pressure in the sinuses...etc..
But I "soldiered" on...tending to my children and my partner, easing their discomfort, convinced I could power through mine. 

Just pop the Aleve and keep the citrus coming.  I can fight this off myself.

Mind you...we all just got over RSV which paid a visit in November and over-stayed its welcome.  I'm nursing, still, and I'm quite convinced that my body is putting more effort into making milk then it is into healing itself. 

But I digress...

I was sick.  I needed real medicine...not just fever-reducers and clear liquids.

But the very idea of stepping through the doors of a medical office made me want to cry.

I'm not a crier.  I'm a blink it back...swallow it...never let them see you hurt...

Perhaps learning how to cry is part of healing?

So, something happened.  Once. One bad thing.  Horrific, really. 

You don't need to know, and I don't need to write it out.  Not here. Not now.

It was a bad thing.

One bad thing that I have, in my post-traumatic avoidance, allowed to fester and grow into an all-encompassing terror that stops me in my tracks.  It defies reason and logic, and the pursuit of health. 

One bad thing happened.  To me.

And I have spent all these years, trying to protect myself the only way I knew how...but in reality, just continuing to be a victim.

Because I just stopped.

I have tried.  Please know that.  I have made the appointments, and from time to time, I have managed to force myself to go.  But eventually the fear overrides my earnest attempts, and the years go by.

This is trauma. And it has always been stronger than my will.

So I have gone years without a check-up...without dental interventions...without primary and continuing care.  Because I am weaker than my fears.

Yesterday, I was so sick...so weak...that my fear-response weakened, too.

I made it in the door.  I made it to the counter.  I asked if there was someone on-call for sick visits.

And I was turned away.

Because, you see, my fear...my fear had kept me out of that office for more than three years...the outside window of time that my practitioner has for considering someone an established patient.

There I was.  Inner monologue firing off warning bells as I held myself rigid so as not shake.  Having fought a battle just to cross that doorstep.  And...no...   No, I couldn't be seen.  No, I couldn't get help.  No.

I said "thank you" and walked out.  I got to the car and collapsed inside and broke into a million little pieces of self-loathing and shame.  This.  This was what I had done to myself.  Here and now, unable to get the medical help I needed because I hadn't been braver...sooner.  Why was I so weak...so pitiful?  Oh, how I hated myself then.

(In hindsight, with a cocktail of pharmaceuticals in me as I type this...it's the man that I hate...the one who did the thing...the one who made a victim of me.  But yesterday, I could only see my own shame.)

Home again.  In defeat. In shame.  Sick.  Exhausted from illness and from the fight to get past the fear.  Feverish and dizzy and weak after weeks of caring for everyone else while ignoring myself.

Aiming for stoic on the outside, but hysterical beyond the point of return on the inside.

Thankfully, my youngest was still napping.  My eldest helped me into the house...settling me down and wrapping me up like a burrito...tending to me as I've tended to him.  I hid my face as I cautioned him to not let fear ever disrupt him.  I hid as hot tears spilled out of my burning eyes.

I hid my shame. My fear.  My weakness.

I was an embarrassment.  A broken, useless thing not fit to be his parent.

And he tended to me.  Cool water and warm blankets and soft hands on my forehead.  Lights out and silence and whispered reassurances.

(He's a miracle, this one.)

Some time later, my partner returned, having found an urgent care that would accept my insurance. (Most don't, and we don't have the financial security blanket to cover medical emergencies.)

Back into the car...inner dialogue of tough-love resumed...and off we went.

I made it in the door...over that threshold.  I filled out the tablet-intake screen.

Followed the texted prompts and typed in the necessary fields.

Sat in the chair, waiting, repeating over and over...stand up, walk in, don't cry.

Finally, my name was called.

I stood up.

Walked in.

Gasped in a breath of face mask and cold, sterile hallway as my temperature was taken, and found myself in triage...counting the black dots on the wall in front of me as some part of my brain answered the assistant's questions.

Temperature, again.

Step on the scale. Ouch...my brain registering a number higher than I used to be.

Sitting down...blood pressure cuff.  I froze in panic as it tightened...feeling invisible fingers clenching my arm.  Black dots. One...two...twenty-seven...  Done.

"Follow me."

Back in the hallways with bright lights buzzing and astringent smell.

Then the gaping silence of a small room.  My adrenaline firing at every crinkle of the paper beneath me.  My breathing suddenly so loud that I didn't hear the footsteps or knock or door opening.

"I'm Doctor ____.  What brings you in here today?"

Rote answers.  Rehearsed in my head in advance.  Hands clenched around each other to no one could see the claw marks my fingers were leaving.  Pain to override freezing panic.

Checking me over.  Checking my chart.

Lights.  Swabs.

Gagging and tearing up.

Apologizing, over and over, and asking for a moment.

The doctor...older...stepping back, confused but waiting for me to gather hold of myself.

A second try at swabbing my throat.  I stayed rigid this time and didn't break.

He said "good job" and I felt a flush of...embarrassment...pride...something...

The assistant vanished to run tests while the doctor checked my ears and nose and throat again...palpating glands sore to the touch.  Asking again about my children and their symptoms.

He stepped out and I yanked my mask down, gasping for unhindered air.

Then chastised myself for that weakness and hoisted it back up.

The door opened again.  Rapid results all negative.

Caution to quarantine until the next set.

Diagnoses as he checked my sinuses again.  Directions.  Pressing in on those swollen glands and cautioning me to take everything as directed.  A moment's pause as he stopped to look me directly in the eye.  Then a hand-pat of reassurance..."It's all in my notes.  You don't have to remember it all."

Still nursing, so only one kind of antibiotic allowed and only at a lower dose...so...

Antibiotics.  Eye drops. Rinses.  Fever reducers.  OTCs for the post-nasal drip and cough and sore throat.  Homeopathy for increased comfort and symptom reduction.

"I'll put it all in my notes."

Referrals to specialists in case I need them.

Another hand pat.  "I don't expect you to need them."

Then out the door to discharge.

Features arranged and held on pause....blank...waiting for paperwork.

Back to the car.

Safe.

Collapse.

I did it.

I did that.

I made it through.

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

I'm sick.  Medicated.  Fuzzy and feverish.

I liken it...yesterday...to cauterizing the wound.  A painful, but necessary sealing.  Burning to stop the ongoing bleeding...just long enough to store up energy for the next step.

(In my limited, layman's understanding of that process.)

A beginning to healing.

There will be more.

They may hurt more...or less.

But now I know what it feels like.

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

This year I chose heal as my word.

Apparently, it chose me back...and upped the stakes...forcing my hand, maybe before I thought I was ready...but in its own perfect time.

Yesterday I was full of shame.  Full of self-loathing.

Today, I'm full of meds and a little bit of pride.

Just enough of each to write it out of me.

Just enough to take note of the triumph.

 Progress.

There's a loaded word.

There's progress in achievement, right?  Where every step forward is counted as forward motion.

There's progress in action.  Literally one step (or movement) toward the conclusion.

There's progress along paths and journeys and travels and trajectories.

There's progress in pregnancies, and education, and careers.

And then there's progress...the loaded version...the word used when achievement is not in reach...when the development is stalled or so slow it might as well be frozen. 

That progress is the word that makes the reading of its reports an exercise in grief:
Progress Reports.
Namely, those associated with special education.
Reports where progress is noted and tallied and far too often...halted.

Where that bold black "P" just stares up defiantly from the page...day to day...month to month...sometimes year to year...never, ever turning into an "A" for achieved.

That progress is like a spill of black ink...gradually staining the page till everything is soaked in the lack of movement...the lack of development...the lack of achievement.

Sometimes that "P" is a lie.  A statement of progress that was happening at one point and has stopped since.

Sometimes it's a white lie...true in its basic definition but not accounting for the understood nuance of progress as defined by change.  Incapable of accounting for, or of, change that is so minimal...so gradual...as to be indistinguishable in the days or weeks or months or years.

"How's he progressing with that?", is a question that's been posed to me far too many times of late.  A well-intentioned expression of interest and care...I know...but one that's a literal pain in the neck.

(I carry my stress in my neck and shoulders)

"Any progress yet?", is another.

Both make my eye tic a bit, as I struggle to find the perfect, neutral expression with which to respond "No change" without those words imparting something negative to the solicitor or stirring up some feeling of defeat in me. 

The checkbox next to the goal reads "P", as it has for months now.

I expect it still will, months from now.

Perhaps that "P" isn't meant for me.  Perhaps it only exists as a clinical observation...a way to box into the structure of typical development a boy...this boy: brilliant and neurodivergent and expanding exponentially in ways that don't tick boxes or fulfill milestone expectations. 

Perhaps the progress report is just a piece of paper with ink on it.  Not a complete picture...not an accurate reflection...not even a realistic observation.  One hour a week...a clinical hour at that of 45 functional minutes or so...hardly equates to a full understanding of a child's skills~behaviours~intellect...of a child's progress. A snapshot that's been altered for size and contrast and saturation...but comes up pale and blurry against the real thing.

Perhaps progress is a misnomer, after all.  A word used in place of ones with more negative connotations...such as average or basic or ordinary as applied to development.  Perhaps progress is simply what's expected, and when it comes up against something different, it stops...like a computer program when it encounters functions beyond its coded parameters.

Perhaps the best answer is the easiest:

"At his own pace."