...first bite...

 6.September.2023

Henri's 1st day of Pre-K (the homeschool edition)

"The beginning is the most important part of the work" -Plato

"Promise me you'll always remember: You're braver than you believe, stronger than you seem, and smarter than you think. " - A.A. Milne

~~~

Here's to setting your spark ✨ ablaze and finding your own lifelong love of learning, little one.

Here's to celebrating your unique interests, creativity, and approach.

Here's to developing your intellect alongside your independence.

And...most importantly...here's to you and all that you are becoming!

🍎

...1 (in days gone by)...

 Every once in a while, 'memories' pop up on one social media platform or another and I think to myself, I ought to copy that over to here.  I think it...and make a mental note...and then promptly forget again.

 Such was the case, once again, yesterday...when I first logged onto Facebook in the early hours and took a little detour from prep work , to traipse down memory lane.

So, this one's for me: a (hopefully fully manifested) series of 'past posts', come home to roost.

In Days Gone By:
18.June.2019

I slept through the alarm this morning.

Okay...not really.

More like...I dozed off after waking up just long enough to turn it off.

"Came to" some ten minutes later, with the heart-racing adrenaline rush when your brain knows you have s*** to do but your body is trying to pretend it's still nighttime.

The achy breaky stumble through morning routine commenced. Coffee? Check. Breakfast? Check. Clothes laid out? Check. Check. Check.

He hopped into the shower. I slumped over the kitchen table in between "2 minute warnings"...the coffee mug just out of reach.

Gurgle in the pipes as the shower stopped. Reminder to hurry again... Then...out...in a flurry of towel and drippy hair and shower thoughts about Transformers. (Of course!) He's off to get dressed. I'm off to make the beds-wash the breakfast dishes-download my workload-stumble over the cat once-twice-three times the charm!

It's Finals Week. Everything is off kilter.

No lunch prep needed. But snack and drink, and tea for the bus stop-wait. Check the bookbag. The rescue remedy refill reminder clearly didn't work-empty pill fob. Run through my checklist as I count out 9 pastilles-cram and twist to close. Chromebook? Check. Sharpened pencils? Check. With erasers? Err....crap...nope....where's the damn box? Check. Drawing pad? Check. Earbuds? Check. Glasses? Check. Check. Check.

Hazard a quick glance at the clock...woah, running late! My yell to "hurry up" answered by his "I can't" whimper as out he finally comes...shirt-tails flapping, hair still dripping.

"Mami? I wanted to wear this one, but..."

He's replaced the shirt I laid out with yet another blue and turquoise, plaid, short sleeve button-down. Yes...full title needed. Under no circumstances can we simply say shirt or blue shirt or even blue plaid shirt. Full. Title. Needed. "Precision of Language!"

So here he stands, in the middle of the kitchen, blue and turquoise, plaid, short sleeve button-down half on, offering up to me The Problem. "I wanted to wear this one, but look...." The buttonhole is torn. No doubt from his new(ish) stim of tugging on his hems...shirts, shorts, even socks...everything gets tugged.

"How about..." I start to say, but cut the half-formed thought off. Yeah, no. There's no how or why or rhyme or reason. It's Finals Week and everything needs to be just-so...calm, cool and collected, so that brain of his can churn away and spit back all the facts it's been crammed full of all year. There's no room for distraction or discomfort. No room for entertaining alternates. There is just this shirt-the first and only choice-and two minutes before our bus alarm goes off.

"Okay, I've got this" I say, as I wrestle him out of it...his arms, still damp, sticking to the sleeves. Off he goes to grab his robe...he does NOT do shirtless. Off I go to retrieve my sewing box. Precious time wasted as I try once-twice-seventeen million times, to thread the needle. Finally my brain processes the thread width vs. the needle eye size. New needle? Oh, yes, in the tin. The tin that WON'T OPEN! Argh! Yank, twist...sweating now. Glance at that clock again...Double Argh!

There goes the alarm.

POP! Well, the tin's open. And sewing needles are all over the sofa...and...

Yup. Ouch...that one's point down in my thigh. Waaaaah!

Let's fast forward...no real damage done.

New needle. All good. Thread zipping in and out. Tie it off. Snip!

Robe off. Shirt on. Good as new.

Grab the bag. Grab the tea. Grab the boy.

Off into the rain.

The rain?

The RAIN!

Welp! Back in, grab the umbrella.

Say cheese! Click...photo? Check.

Off into the downpour.

A noticeable groan from the boy who now, clutching his abdomen, says "I hate rain".

Yup. There's that. Weather-induced headaches and gastric issues.

It's Finals Week. And it's raining. And he's off his game.

Awesome. (Yeah, no.)

Down we trudge. Bus arrives. He winces, as ever, at the squeal of the brakes.

I stand, waving my arms about like the 'Wacky Waving Inflatable Tube Guy' at the disappearing tail lights...

"I love you! Come home safe to me." Blow a kiss. My ritual.

Back up and in. Umbrella propped across the sofa to dry. (Small space living, m'i'right?) Tea kettle on. Laptop unplugged. Shoulder-mounted kitty.

Chime!

My phone screen lights up and I smile. Google Hangouts-from the bus.

"Thanks, Mami. Ps-why is everyone on the bus SO LOUD?!?!

Ps again-you look tired."

"Earbuds are in the left front pocket, kiddo. Put them in! I'm suuuuuuper tired...and old, and fading...but thanks for the reminder to shellac my face!

Good luck today...and DON'T TUG ON YOUR SHIRT, please?!?"

Chime!

"Okay. Ps-the button on my shorts is loose now, too."

...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.

...but the first of many...

 A spark:
...of something new
...of fiery determination
...of limitless curiousity
...of exponential growth
...of change

Closing the very first chapter in the book of you, as you graduate from Early Intervention.

Just shy of 3, and already laying the foundation for a beautiful life of learning and growing. I'm so proud of all your hard work and your resilience.

You, little Henri, are a trailblazer...and I can't wait to see all the new vistas we'll explore together.

Happy Graduation!

 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."

...no safe space...

 "Are you ok?" (12:31 pm)

"Please answer me." (12:33 pm)

"I love you." (12:34 pm)

"You are my whole heart." (12:37 pm)

"I love you. I am so proud of you." (12:41 pm)

"Follow the directions of teachers and police. Stay with your classmates." (12:45 pm)

"Please stay safe." (12:46 pm)

"Come home to me." (12:49 pm)

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

He called at 2:27 from the bus to let me know he was on his way home.

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

With the slaughter of elementary schoolchildren and their teachers in a Texas elementary school weighing heavy on my heart, I sent my senior to school this Wednesday morning and prayed (as ever) for a safe day. Safe. Not from the bullying that he's endured daily. Safe. Not from the shame of being ostracized. Safe. Not from the self-destruction of anxiety and depression.

Safe.

Alive...whole...intact...safe.

From bullets.

I prayed as I snapped his photo. I prayed as I kissed him goodbye. I prayed as I closed the door and turned to my youngest's concerns. I prayed, the silent all-encompassing internal whisper of prayer of every mother of school-aged children on Wednesday.

Be safe. Stay safe.

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

At 12:29, as I nursed my youngest down for a nap, both mind and body exhausted from a morning spent entertaining his every toddler whim and whimsy, my phone wishfully on silent-mode, I received a simultaneous robo-call and email:

 "WHRHS is currently in a lockdown due to investigation of a threat received over the phone. We do not believe the threat is credible. Out of an abundance of caution, police are on sight investigating the threat. An update will be sent at the conclusion of the lockdown."

I have never been more scared.

That call.

That email.

There is a sudden blackness that rushes through. A hollowing. The prayer goes silent.

And from the depths, a clawing urgency...instinct firing and burning off reasoning and logic.

I held one son as he dozed, in terror for the other.

Immediately I sent my eldest a text. And another. And another.

Desperate silence.

I have never been more scared.

Social media forums burst into life as other parents panicked and queried.

Another message was shared by the police department:

"The police department is currently conducting an investigation into a reported threat at WHRHS. The school is in lockdown and there is adequate police personnel on the scene. We ask that parents DO NOT respond to the high school at this time. More information will follow."

I left my youngest asleep and pulled out every piece of tech, tuning in to every source and forum I could pull up. And finally...a breath...as we saw a few students and staff begin to comment in the threads to reassure us that they were safe.  

"I am in school now. Kids are taking this seriously and we know what to do. We are still in classrooms."

"Officers with rifles are coming in room by room."

"Our classroom checked twice by 5-6 armed officers."

"Down on the floor in the dark."

And a swirling cesspool of fresh terror as parents shared text replies from their children:

"Gun in the bathroom."

"School was breached."

"Might be a bomb threat."

"I hear walkie-talkies...there's a shooter on the football field?"

I have never been more scared.

Volume up. Notifications on. Ringer at max.

My phone still silent.

Staring at those words on one screen and then another.

It is May 2022. And we, we parents, we know in a way that we didn't before, that there is no transparency offered by school or police. We know that what we are reading, others have read. We know that parents on Tuesday read similar words even as their children lay injured and dying and dead.

We know.

The comments flew by. Questions. Answers. Reassurances. Rumors.

And we waited.

I waited.

Safe. Please. Safe. Please. Safe. Please.

The endless refrain whispered as my mind went to dark places and prepared for the worst. As the facts and figures of school shootings I'd read about re-matriculated as data points to sort through and make sense of.

Safe. Obey. Please. Obey. Safe.

Splitting in two as one part handled every-parent fear, and the other took over the fear of parents of autistic children, who know full well that the statistics are not in our favor...our children injured...killed...by law enforcement because of their "unnatural" responses to unfamiliar faces and directions. Our children restrained, tasered, asphyxiated, shot. Our children killed by those sent to protect them.

Obey. Please. Safe. Please.

I have never been more scared.

My mind flickered through all the training I've done with him:

Stay calm

Answer direct questions.

State your name and diagnosis.

Ask for assistance.

My memory, though, flickered through every time he's frozen in place or gone non-verbal or flailed, aggressively, sensory-seeking and desperate to find an anchor.

I have never been more scared.

Two hours, roughly. From the time my phone vibrated to the time he called. Two hours in which my world stopped...froze...waited in emptiness...in hollowness. Two hours of desperate scrolling and texting and waiting and waiting and waiting...to breathe.

It is May 2022.  And we, we parents, we know our children are never safe.  Not in their classrooms.  Not in their locker rooms. Not in their cafeterias...hallways...bathrooms.

Not in this country. No, not here. 

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

"We cannot become numb to the tragedies we witness daily. We don't have to live like this—and we don't have to die like this. It's time to hold our elected officials accountable for their inaction.": Urge Your Senators to Pass Gun Safety Legislation Now

...time's up...

Imagine how desperate it feels to be waiting for change.

Imagine how degrading it feels to be reduced to a stereotype.

Imagine how dismissive it feels to be told that you know less about your own disorder, how it affects you, and what supports you need, than a first-year psych student.

Imagine how it feels to be told that someone else's experience of you is more important than your experience as you.

Imagine asking for help and being told you can only pick and choose from services that will cause you further distress, further dysfunction and potentially, long-term trauma.

Imagine how desperate it feels to be waiting for change.

Imagine:

~your diagnosis and very way of being, used as the punchline to a joke all around you

~being told to let others do the speaking for you

~having your expert perspective completely ignored

~being told you won't amount to anything

~being accused of having no emotions and no connections

~being feared because your diagnosis is falsely linked to the potential for violence

~being ostracized from your peers for fear of social contagion

~ having limited learning opportunities in self-contained classrooms because bureaucracy only funds to the general population, not specific need

~learning and working and living with people who assume incompetence

~spending every day exhaustively in mimicry of other peoples' actions/behaviours/expressions/vocal patterns/etc... for their comfort, at the cost of your own mental and emotional health

~being punished or penalized every time you try to self-regulate

Imagine how desperate it feels to be waiting for change.

Imagine being autistic.

The waiting needs to be over.  The time for change is now.

We are here.  We are intelligent.  We are reasonable.  We are impassioned. We are emotional. We are empathetic problem-solvers. We are creative non-linear thinkers.  We are communicative.  We are social.  We are familial.  We are familiar.  We are HUMAN.

See us.  Hear us.  Amplify our voices.  And stand behind us in allyship as we change this world for the better by demanding acceptance, inclusion and the respect so long denied us.

Time's up!

...unacceptable...

 From our Team:

The Oxford Dictionary defines acceptance as:

1. the act of accepting a gift, an invitation, an offer, etc…

2.  the act of agreeing with something and approving of it

3. the process of allowing someone to join something or be a member of a group

4. willingness to accept an unpleasant or difficult situation

(accept is defined as: to take willingly something that is offered; to say ‘yes’ to an offer, invitation, etc -  to agree to or approve of something - to take payment in a particular form - to admit that you are responsible or to blame for something - to continue in a difficult situation without complaining, because you realize that you cannot change it - to make somebody feel welcome and part of a group - to believe that something is true -  to allow somebody to join an organization, attend an institution, use a service, etc.)

The current majority of society defines autism acceptance as:

1. contrived, of-the-moment, sympathetic acknowledgement of its causing great discomfort and hopelessness to families of autistic children

2. for-profit sales incentives, themed-product offerings, and donation-gathering for non-autistic serving/non-autistic led organizations

3. inspiration-porn: “a term coined by the late disability activist, Stella Young, refers to the objectification of people with disabilities in media, which serves the purpose of making the consumers, people without disabilities, feel good.” (credit:Inspiration Porn - AbleSC (able-sc.org)) and the pigeon-holing of autistic persons as being inhuman to the point of only existing as series of challenges to be overcome

4. educational and social programming full of empty words, promising a further understanding of or support of autistic children, families of autistic children, and educators of autistic children…while ignoring the very existence of autistic adults and drowning out the voice of the actually-autistic community by speaking over them or protesting that their manner of communication is too aggressive or stilted 

5. *bonus round* - one day in April ~ the month of April ~ a guilt-trip from the dead-eyed teenager scanning your discounts at the checkout register

Actual-Autistics (many, not all...yes, there is divergence in this community just as with any other) define acceptance as:

1. welcoming, seeking out and amplifying the voices and experiences of autistic people, particularly in identifying the actual support needs of the community
2. an end to the common-use infantilization of autistics
3. the death~cremation~and burial of ableism, once and for all
4. a hard stop on the action-based assumption that autistics have any desire to "pass" as typical and, relatedly, for the world over to become a safe-space in which we can unmask
5. the fearmongering (aimed at parents of autistic children with the goal of increased financial output into quack therapies: often dangerous, sometimes life-threatening, and most often traumatic) to be deemed criminal and those who practice it appropriately penalized
6. release from the standards of typical societal expectation and acknowledgment as being of equal value no matter our form of communication or our coping strategies
7. societal, if not celebration then at the very least reaction-less observation of stimming and encouragement to continue what works for each individual (so long as it is lawful) and provision of physically-safe stimming substitutes for those of us who self-harm without meaning to
8. acknowledgment of autistic burn-out and alternative work environments and schedules, both as applied to the job-force and to education

...need we go on???

Perhaps this list is dauntingly impossible...impassible...enough.

After all, if we're still asking for it in 2022?

...here for the highs and the lows and the highschool...

We waited for the bus to arrive this morning, on this first day of a new school year.

We waited, and walked, and talked.

I'd forgotten our tradition, you see. The one where I read to him from "The Hardy Boys".  We've been inching our way through the series since kindergarten, a chapter or so per day as we pace back and forth in the heat of early fall ~ the crisp cool of autumn ~ the thin, breath-stealing chill of winter ~ and so on.  Some days we're running late and I barely get in a sentence before the bus squeals to a stop.  Others it's a chapter and then some, words rushing by as my watch ticks off the minutes and we wonder if the driver forgot us.

I'll remember tomorrow, no doubt. I've already laid a fresh new book out next to the door, so I can't miss it.  Now I just have to figure out where I "cleaned up and organized" away our bookmarks to, and I'll be good to go!

At any rate, this morning I forgot.  So instead of reading and listening, we walked in an ever-widening circle, talking our way through his first-day jitters and all the empty platitudes of encouragement that I could only hope he wouldn't actually need to rely on but put breath and sound to anyway.  He let me ramble on about all the new coming his way today, interrupting to redirect the conversation to his latest design ideas.   I interrupted right back, steering us into the "call me...email me...google hangout me" if anything goes wrong.   

I looked up at him in the middle of our conversation. Looked all the way up...all 6'4" from my 5'8" vantage and thought to myself "what a marvel it is to have raised up this young man who I look up to!" and I must have smiled at the thought because he asked me why I was smiling. 

I said this:

"Because I have been the lucky one."

I.  Have been.  The lucky one.

I, alone...have been the wingwoman ~ the ride along ~ the plus one ~ the teammate ~ the encourager ~ the consoler ~ the counsel giver ~ the rage receiver ~ the advocate ~ the single solitary only parent.  

The mother.

The lucky one.

Here through the lows, and here for the highs.  Here for the jeers and tears and hugs.  Here for the meltdowns that left scars on my shins.  Here for the 3am sleepwalking and the night terrors that fed my insomnia.  Here for the homework headaches and the teacher tribulations.   The sensory calamities, the volume catastrophes and the sleepless nights.  Here for every single hug and every single smile and every single laugh...every honest, gut-jiggling, jaw-cracking laugh.  Here for the parenting.  Here for the motherhood.  The one lucky enough to be here.

I've been here all along.

I haven't missed a thing.

He starts high school today. 

And I am overjoyed and heartbroken, in awe and nerve-wracked....I am all those things that all we mothers are on the first days of every new chapter.  I am full of memory, of everything that's come before.

I will spend my day missing him, trying to distract myself with work. I will wonder if he's found a familiar face or a quiet space.  I'll be preoccupied by concerns and worries and nerves.  I'll miss him.

And he?

He will be himself. Wholly himself, just as he always is.  As his autism frees him up to be.  Brave and bold.  Secure in his sense of self.  Determined to use all the strategies he's learned to cope with the noise and the crowd and the pace and the newness of it all.

He will be overwhelmed, but he won't let it show.  He will be curious, but keep his questions silent.  He will squeeze himself down into a small version of himself and try to blend in, unseen and unnoticed.  He will shut down and shut out and shut off.  He will cope, to the best of his ability. 

And when he comes home, I will be here, as I always am...smile on face, arms wide open...

And he will wait until the bus pulls round the corner and we are far beyond the sightline of the other kids  to rush into those arms and tell me, as he has every day of every year..."I missed you."

~Leanna