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.
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