...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.

 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."

...MAY it not stop here...

From our Team:

 Oh hey ~ it's May.

Dim the light...close the curtain...pack up the props and the posterboard and the donation jars.

April is over.  Autism is over. 

???

I know...I know...you're thinking "Wait, weren't they just complaining about April and all the emphasis on autism all month long?  Shouldn't they be glad it's over?".  So much YES and so much NO, all wrapped up in the ongoing and exhausting life-work of true advocacy. 

April is a harsh spotlight on all the things that don't work the way they are intended.  It uncovers the dirt and grime of for-profit agencies, the victim/saint/saviour narrative of the "warrior mom/dad", and the drowning out of actually-autistic voices. It serves as the shady producer that allows all the actors in our lives to ask intrusive questions and make inappropriate (and usually false) generalizations about autistics, and pay lip service to our asks and truths.  It is the equivalent of putting a Band-Aid on, without first cleansing the wound and applying an antibiotic to kill the infection.

April is hard.

We tire of the same old rigamarole: the money grab, the empty promises, the good intentions, and the dismissal.  We tire of the obligations to teach: both the obligatory, implied social one, and the self-inflicted one that we steel ourselves for, brushing aside our discomfort and disgust.

April is hard.

Our very existence is turned into a month-long meme.  A series of feel-good stories to force-feed guilt and open wallets.  Our diagnosis is weaponized, in the hands of the public, and our words turned against us as "proof" of our difference...our deficiency.  Organizations spend huge budget dollars making our personal struggles into fodder for the public, using our very private challenges to increase their bankroll.  We're put on display at "autism-friendly events" where volunteer hours coincide with photo "opportunities" where our unique communication is assumed as permission. 

April is hard.

When we are lumped into a caricature...

When we are reduced to a stereotype...

When we are feared or pitied as an epidemic...

April is hard.

But so is May...and the months that follow, until April looms on the horizon once more.

Because May 1st - the day after April - the day after Autism Awareness Month- is when the real work begins. May 1st is when, if we're lucky, our message gets through the static that April created.  May 1st is when the bright, shiny distractions of awareness are boxed up and our words and art and expression have the tiniest chance of finding space on the playing field.

It's May, and autism is still here.

It's May, and autistics are still here.

It's May, and we're asking the same questions.

Do you hear us?

Do you see us?

Will you be our allies?

Will you help us work toward an April 2023 that doesn't damage our community?

Will you help us spread our expert knowledge/experience/advice so that the autistics that come after us will be better equipped?

It's May.  We're waiting and watching and listening.  We're hoping you learned something.

...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!

...dollars vs. disappoinment...

 

One of the topics we’d planned on bringing up seems all the more relevant in this very moment, as a previous social media post touched on both the disappointment in not being able to attend a specific event, and the financial burden that attending would have been…all wrapped up within the context of disability and the budget line items that never get mentioned…or maybe, just aren’t realized by those “on the outside”.  

Beyond the very real non-negotiables that even the general public is usually aware of, if only on an ephemeral level: medication, therapy, treatment plans, consultation fees, special diets, technology, assistive devices, school fees, care-giver fees, specialized housing, adult services, etc… there’s the hidden costs to families of disabled children and/or young adults for participation (read also: the halfway realized attempts to satisfy inclusion practices).

Let’s take a little trip back in time, shall we? ↠↠↠

Rewind to Kindergarten…and all the classroom celebrations, chock full of party games, music, food and parental involvement (or, more realistically, parental observation). 

• That special diet? While everyone else is enjoying the “free food” supplied by class moms

 for the celebration, your parent has short notice to source and purchase similar items to send in

for you (most often, at minimum, twice as expensive as the brand-name commestibles

filling classmates’ plates) to ensure that you are safe from both allergens/trigger chemicals

and from classmates' observation that once again, your “difference” is being made an issue of.

• Loud music in the classroom causing sensory overwhelm?  Worry not…your parent

has already supplied the school with duplicates/triplicates of the pricey but effective

noise-dampening ear buds and sent in a second proprioceptive-input vest, while the

case-manager procrastinates, as only she can, on pushing through the paperwork that

would allow the school to use funding for classified students to purchase the appropriate

accommodating technologies and devices like these that you’ll need for school.

• The upset to your well-balanced system of routine and expectation as the rules go out the window

and the class ramps into overdrive for games and crafts instead of vocabulary drills?  No worries.

Mom took off from work (and took the pay cut) to be by your side and guide your little self through a

series of calming, restabilizing activities over in the corner where you both hope no one will notice

your uncontrollable reactions, while your classmates play holiday themed jumping games.

Whew…kindergarten was a rude awakening, wasn’t it?

Let’s skip ahead. Elementary school and the mainstream classroom.↠↠↠

• Teachers and aides “strongly recommend” that parents purchase similar items to what their child is using in class, for use at home during homework.  There goes that bank balance again, as the hand weights or adaptive writing tools or slanted workspaces or…or…or…are sourced at non-educator prices and your mother wonders what certification she’d need to use the educator discount…and whether she could work those classes into the budget. 

• Grade level parties?  Just take what you spent to make in-class parties tolerable and triple it.  Because whatever you send in, whether it be food or assistive tech, will be “borrowed” by other students and most-likely trashed…either literally dumped in the trash, or broken beyond repair.  And the treats you send in for Trunk-or-Treat or performance refreshments?  Guaranteed to mysteriously disappear despite all the bold sharpie labeling. So do remember to grab that second bag you packed up on your way out the door.

• You take meds?  During the school-day?  Cool, cool.  Have fun explaining to your insurance provider that once again, the school nurse has called home requesting additional refills.  Hmmm…oddly not covered.  Maybe a parent can take on a side job to pay out of pocket for those.  Oh, and while they are at it, make sure they can cover the cost of all those copays that stack up every single time your class has a fieldtrip and your medical paperwork suddenly requires a fresh signature from the doctor. 

Move-up ceremony commences. You’ve made it to middle school!↠↠↠ 

• Thinking of participating in sports like the rest of your classmates are doing?  No problem…the after-school program is totally ready to include and accommodate you…so long as your parents

are prepared to buy multiple pairs of the custom orthotics you need because for you, autism and stable stance are not friends.  Don’t worry if they feel a little uncomfortable.  The first pair will get ruined when you play on a wet field.  The second pair will get tossed by a coach who thought

they were garbage.  But you’ll get it figured out, with a flurry of phone calls, emails, and superglue. 

• Team doing well?  Hitting the road for the playoffs?  Good thing Mom works from home these days and can put off her work until 10pm when you both finally get back from an absolutely overwhelming bus ride home. It's fine...her blood is mostly caffeine these days. (Is coffee in excess a line item?)

• Oh, hey, now that you’re a 6th grader…let me introduce you to Spirit Days and Pep Rallies.  Super fun, for the neurotypical I’m told.  For you?  T.J.Maxx clearance racks have you covered, as you and your parent delight in a last-minute shopping spree to find something…anything…with the school colors and whatever cheesy theme some PTO mom came up with this year, that will fit comfortably over that proprioceptive input vest you usually hide under your extensive collection of hoodies. While the majority of your school files into the auditorium to scream and shout, enjoy the busy-work worksheets some administrator dredged up from the back of a file cabinet for you to fill out in the library and the company of one bored-bitter-Betty, her social media scrolling, and the sweet sounds of her sighs of boredom. 

• After-school events starting to trickle into the inbox?  In a “it’s an honor to be nominated” way, your family plays the “should we or shouldn’t we” game, trying to milk the budget to determine who should take off from work/what personal aide to hire/if 5 minutes of participation is worth the cost of yet another pair of earbuds and a whole package of treats. Meanwhile, the well-meaning PTO moms are reassuring your folks with empty promises of peer buddies and team-building.

• Middle school apparently comes with an all-inclusive package: say hi to your loaner Chromebook.  Time to hit the online shops and find a tilt platform so you can use it at home. Oh, you’ll probably need a secondary keyboard, custom fitted of course, as you struggle with those typing skills.  May as well go ahead and throw in a supplemental numeric keyboard because your visual-processing hits the brakes when you start searching for numbers mixed in with all those letters.

Congratulations, graduate! Here comes high school.↠↠↠

• Your family is invited to the freshman parents’ night.  A family friend stays home with you, while Mom plasters on a neutral expression and heads out for a fun night in the auditorium, internal calculator blowing a fuse as she tacks on expenses for every activity the administration assures her will be part of your exciting next four years.  

• Successful scholar?  Careful there…do too well and your IEP is at risk, and with it, say goodbye to school-provided provisions and accommodations. Who needs three meals a day?  Not Mom.  Her food allowance can totally go to all the extras you need to get through a school day. Now that your aide has been stripped, it’s time to start losing things as your executive functioning allowance only covers the middle 6 minutes of the class period. On the plus side, someone’s enjoying their new freebie…since, curiously, your items never make it to the lost-and-found. 

• With college on the horizon, maybe you decided to add some co-curriculars…say, the robotics team.  Oh, wait, are you me?  Ha! 

• The meal train set up by parents to feed the team during build season?

Mom’s not doing that…no, seriously, she’s not.  Why would she take

money from the family budget to feed everyone else, when no one ever looks

over that allergen form you all had to fill out at the start of the season and

supplies food that you can actually eat?

• Headed out to compete in-person?  First off, congrats!  Must feel amazing after two years of “virtual everything-pandemic style”. Now, I know it’s been a while since you had to worry about what to bring with you, so let’s make a quick checklist.

ㅁNoise dampening ear buds

ㅁNoise canceling headphone

ㅁSensory fidgets

ㅁ“OTC” meds and homeopathic remedies for the host of symptoms your body *will* respond to all that stimuli with

ㅁFood that fits your medically necessary diet

ㅁYet another permission slip signature copay from your doctor

***Do yourself a favor and stow it all in your team bag the night before and do try to remember to put everything “back where you got it from” while you are on-site, or risk the loss when once again, your overwhelm becomes a full on panic-attack.

• Victory sure does feel good, doesn’t it?  Your team has built one tough bot!  Going all the way to the World Championships!!!  The team, that is…not you.  You’ll be the one staying home, because it’s a multi-night overnight trip across the country…and that budget your family has been squeezing for extra coins all these years, doesn’t have  twice what your teammates have to pay.  Twice?  What? Why?  Oh, right.  You’re disabled.  And your disability makes a support-person a necessity for travel. Yup…airfare for two. Hotel accommodations for two.  And the team food plan?  Not applicable thanks to the special diet that keeps you healthy and level.  (You’re me?  Oh…make that 3 times it all then…since Mom is still nursing baby bro, he’s gotta make the trip as well.)  Sorry, buddy, you’ll be staying home to watch as the rest of your team ‘takes Houston’ and makes those connections that can last a lifetime.  Too bad your school doesn’t really understand what true inclusion involves.  Too bad real accommodations weren’t discussed/offered.  Too bad for you…alone…because they’re headed off to what’s going to be an amazing trip.

• Lest you get too entrenched in this particular disappointment, let me remind you that you’ll also be missing out on Prom, because there is No Way your mom can influence or berate the administration into making a sensory-safe environment there for you. 

• And the after-graduation all night Project Graduation party that the PTO is throwing?  I mean, maybe you’ll see pics on social media?  Same problem.  No solution.  Unless your family wins the lottery and can sponsor a sensory-friendly room at the adventure center.  

~~~~~~~~~

So here we are:

Is participation worth it?

Is the current inclusion model actually inclusive?

What’s the real cost to families of disable children/young adults

trying to level the playing field so that their child(ren) can attend?

How, if at all, do we go about encouraging change?

Just a thought here…a “see what sticks” moment.     

• Imagine, if you will, that the advisors for your Robotics team, already aware of your IEP and your diagnosis, sat down to discuss what would be needed to include you as a valued member.
• Imagine that, together with team sponsors, they approached your family with a plan to ensure that you would have a support-person for travel, safe options for food, and safe places to decompress if the sensory stimuli became too overwhelming.
• Imagine if the playing field were actually level.
• Imagine if your diagnosis was acknowledged, accepted, and actually accommodated.
• Imagine if your participation was actually of equal importance to your neuro-typical peers.

I’m sorry.

It’s disappointing. 

It’s reality, and it’s disappointing…again.

I'm sorry I haven't figured it out yet.

I'm sorry I haven't created the solution yet.

I'm sorry it hasn't been fixed yet.

I'm sorry your needs go unmet, unseen, unrecognized, unrealized...

I'm sorry your value to your team is minimized by your disability.

I'm sorry your id number in your class and grade is so easily deleted when your accommodations might require extra time or funding.

I'm sorry that only those closest to you know how much you would have wanted to be there, and how easy it would have been for administration to make actual accommodations, create an actually inclusive program, and level the damn field.

...it's not about the shoes...

Tonight, Mister Man is attending his first prom.

14 years old and the dapper darling of his mother's eye, he'll be tuxedoed and tucked and tied and looking every part the young man about town...until your eyes drift down to the rough and tumble sneakers below those bottom hems.

 Earlier this week we had to squeeze in a desperate rush to Macy's for tuxedo pants as someone had once again grown out of the previous pair after only one wearing. (Yikes! My wallet can't keep up!) At any rate, we finally found a pair of unhemmed slacks that were just long enough, then added on a particularly well chosen shirt and tie.

I've sat in the dim light of an evening lamp, stitching the hem while he drifted off to sleep. I've ironed that shirt, and steamed that tie. And polished the shoes. The shoes that will go back in the closet now, unworn. And I have scrubbed, to my best ability, his "tossers"...those old sneakers that still fit but are too shabby for anything but tossing on for chores or walks.

He'll have to "just do" with them. They're the only shoes that will accommodate the bulky brace currently encasing his ankle.

(As recently as December, he finished a run of Physical Therapy, months in the longevity, for the long-lasting and somewhat crippling effects of a previous injury on this same ankle. He'd hurt it in gym class, several years ago now, when another student mistook his ankle for the ball and let fly... He'd ignored the pain and played on, masking it as best he could in his people-pleasing way. When the limping grew noticeable, days later, he finally drew my attention to it. Pediatrician, here we come! Brace in place, swelling went down and soon enough he claimed the pain was gone. But, what came in it's place? Out-toeing of the damaged foot. Out-toeing that had developed as he adjusted his gait around the pain. Out-toeing that interfered with walking in straight lines, and made running both comical and concerning. X-rays were ordered when Mami persisted in her protests, and PT begun. After months of exhausting, uncomfortable sessions he was declared Graduated from the program and sent off with home-based exercises. )

Phew, got through all that.

So here we are, graduated PT and back in a brace. Something's wrong here. Let's start at the beginning.

Wednesday's facebook post:

So...first the preface: A few weeks back now, Mister Man invited me to the fabulousness that is Google Hangouts.  Awesomeness! I got an email alert on my phone while he was at school. First thought? Ruh Roh! What the heck is this? I clicked through and was delighted to see that he had messaged me. Just a sweet check in of "Hi Mami! Hope your day is good.", to which I responded with maybe a few too many emojis. 

Ok, back on track. We are able to exchange messages while he's at school so as to keep updated and/or on track with assignments, scheduling, last minute plans, etc...  And I am loving it! Let's be real: I miss him during the schoolday. 

So now it's a daily routine. He shoots me a message during his downtime. I reply during mine. He's sent me jokes, asked about after school plans, vented his frustration after a particularly grueling algebra test, etc...

Then, Wednesday:

2pm(ish) :

J-"...also, I sprained my ankle in gym."

L-"What?  Oh no!  Did you go to the nurse?  Are you ok?"

J-"Yeah, it hurts a lot now but only started hurting noticeably during 3rd period. I didn't go to the nurse though."

L-"Go to the nurse!  You need to ice it, now!"

J-"I do?"

L-"Yes. Go.  Don't make me call the school!"

J-"But..."

L-"Go.  Right away, please.  You can't afford to damage that ankle any more. Write me back once you've gone, please."

Phone rings.  Nurse: Blah blah blah, he's definitely got a bad sprain, he claims it's not so bad...wants to go to after school club-needs permission..., wrapped, iced, pretty swollen, can I give him advil?"

A few minutes later...

J-"Done"

L-"Good.  Keep it elevated."

J-"I tend to work through my injuries way too much."

L-"DNA babe, you got it from your mama...that, or my bad example.  Pick one!"

J-"I could have an arm completely severed off, and I'd still be trying to play volleyball. #onehandedtyping "

***Mami imagines that and gulps

L-"Smart but stupid"

#thisismylife #autismmama #sensoryprocessingdysfunction #butidontwannagobacktopt

I shared the above as my status update, and watched as the notifications popped up...all the amused emojis from family and friends who found our snarky exchange laughable.

Meanwhile, I prepped for his return. Bus dropoff at the end of our long, steep gravel driveway wouldn't do...he'd have to make the exit with assistance from bus to car to home. Epsom salts purchased, basin (Alternatively known as slow-cooker insert!) at the ready for one size 12 foot to soak.

He arrived. We got him bundled up and in, and then assessed the damage. Swollen, and red and hot to the touch...that poor ankle was not having it. Into the bath it went. Into his paws a mug of cocoa. Plated up all the treats I could lay my hands on and served with sympathy. And then, despite the wee little voice in my head, went looking through his notebook for the daily log from his para-professional aide...and didn't find one. Ding! Lightbulb! No log, no aide...one unreported, unattended injury. And a full vial of what should have been self-administered throughout the day, to boot.

So here's Thursday's facebook post:

Let's take a moment and think about the special-education piece, in light of J's recent injury.

(Quick recap: J sprained his already injured ankle yesterday during his gym class.  Thanks to the wonder that is google hangouts, he alerted me to this at the start of his last class of the day, having spent the whole day in fairly significant discomfort but without the necessary tools to access assistance, as his para-professional aide was absent and no sub had been provided.)

Yes, it's humorous (not the humurus!) that our google hangouts chat was rife with snark and sarcasm.

But you know what's not funny?

1) That his para was absent yesterday and there was no substitute to take her place.

2) That he was injured at the start of 2nd period, but didn't get help until the start of 8th period.

3) That he didn't take any of his 'self-administered' medication all day yesterday.

4) That he likely further damaged an already weak ankle for which he had just finished PT, because he continued to play and then walk on it all day.

Look at #1 again...

1) That his para was absent yesterday. and there was no substitute to take her place.

A special-education student who relies on the aid of his IEP mandated aide went without all day yesterday and neither availed himself of medical attention, nor miraculously found a way to tend to his own medical needs.  A special-education student who relies on his aide's constant reminders, refocusing and intercessions went about unmedicated all day, and can't recall a single lesson from the schoolday. 

Yes, J is brilliant.  (No, I'm not Mami-bragging.  He's truly, statistically, tested brilliant)  He's also autistic.  The two don't/won't/can't cancel one another out.  He's brilliant, and he requires an aide. 

And when one is not provided....

Well...

So here we are again. Ice packs and Advil and Walgreens where we bought three different kinds of braces: 1 for school with cushioned stirrups to lock his ankle in place all day, 1 for after school so he can be relieved of the stiff panels, and 1 elastic piece for sleeping in. Of course finding them all in sizes large enough to accommodate those massive feet of his??? Ach! 

And then the kicker. The only shoes that comfortably fit both foot and brace? The "tossers". Those old, worn out, stretched to their max cruddy, scuzzy sneakers.

Tonight he'll go to his first prom. A special guest of the "Night to Shine" event, sponsored by Tim Tebow. He's been looking forward to it, in his own way. He chose the shirt and tie. He tried on countless pairs of pants. He's made sure his tuxedo jacket still fits. I've been looking forward to it as well. Waiting to see him all spiffed up. Eager to introduce him to his buddy. Ready and waiting with camera for a perfect photo. He'll come home soon...off the bus, into the house, into the shower with my arm for an assist. My arm, behind the curtain and my body toward the door so he has something to lean on. He'll dry off and get dressed, slowly as usual. I'll speed through my end: dress, shoes, makeup, hair-brush. Perhaps he'll let me blowdry his bangs to the side so they don't hang down, covering his eyes. He'll sneak a mini-con transformer or two into his pockets. And then he'll pull on his dress socks, carefully. And together we'll put on his shoes...I holding the right one wide so the brace doesn't budge. Tying the laces loosely on those cruddy sneakers.

Now lest you think it's all about the shoes...

It's not about the shoes. It's about the aide. Or rather, it's about the aide's absence. An absence which, left unfilled, allowed for an accident to become a situation...for a student with specific needs to waste a school day with those needs unmet...for an injury to progressively get worse the longer it went unnoticed and unattended.

"Why didn't he just go to the nurse?", or " Why didn't he tell someone?", you're thinking. Right? After all, I've told you that he's brilliant. "Why not...?"

But look through the posts above. Look back to see where I wrote this...

He's truly, statistically, tested brilliant. He's also autistic.  The two don't/won't/can't cancel one another out.  He's brilliant, and he requires an aide. 

That's the why not. That, right there. His diagnosis and it's attending symptomology are the why not. They are the reason that an aide is assigned to him via his IEP. They are the reason he relies on that aide to function at his best level. They are the reason why, when he sprained his ankle in gym somewhere around 9am, he didn't notify anyone until round about 2pm. They are the reason why he finally messaged me.

  It's not about the shoes. It's about the administrator who, noting the absence called in by a para-professional aide, didn't fill that absence with a sub. It's about the audacity of a school district employee who made the decision to break the contracted IEP. It's about an individual who thought no one will catch on if I don't fulfill my obligation to this student, his family, my employer and the state. It's about what happens when the rules that are set in place to safeguard one student's FAPE rights aren't followed. 

It's about leaving a student to fend for himself despite evidence that he can't manage alone.

It's about an injury made worse by lack of immediate medical attention. 

And yeah, you know what? When I go to take his photo tonight, and hold the camera just so to crop out the bottom few inches...

It's about the shoes.

~Leanna