...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.

...battle bots and battle bits...

 From our team:

Out here in the real world (read:the shadowy universe outside the computer screen...scary, isn’t it?) it's the equivalent of the Nerd Olympics as our high school robotics team battles it out in the district championships. Trying to push these posts through at the same time is… well…no small challenge.

Here’s why:

Schedule conflicts: 

A bit different within the autism context then you might infer. While the actual schedule is, indeed, jam-packed with overlapping responsibilities and no shortage of double-bookings, it's the disruption to the schedule that causes the true conflict. Executive functioning...that ephemeral skill set that allows for neurotypicals and those unaffected by any deficit to appropriately prioritize tasks, manage time, respond to additional stimuli, etc.. -is, to put it mildly, extremely important and horrifyingly non-existent within much of the autistic community. 

Here’s a quick deep dive…ready, set…submerge! 

You walk into Target as an autistic. You’ve got your list: toothpaste, cereal, toilet paper, whatever.  You’ve got your wallet, and your phone, probably already logged into the Target app and ready to scan. You know what you are here to do. But then…one step in the door and the air is…different. It’s cooler/drier/chalky. It smells like plastic and perfume and body odor and shampoo and coffee and…and  …and.  Shallow breaths to acclimate. Shallow, hitching breaths as your brain-body connection overcompensates and triggers hyper-drive. Just wait, there’s more! The lighting is flickering. Each aisle… sometimes even, each panel, flickering at a slightly different wattage. One or two super bright bulbs draw your attention and your feet start off in that direction, independent of reason. And at the same time, there’s a hundred-plus individual conversations surrounding you like so many waves of sound. It’s as though your brain is on a swivel joint, locking in on one and then another and another and another, unsure if it needs to stay linked or not. Individual limbs seem to be trying to secede from the union as your autistic brain deems every bit of input equally important . . . equally actionable. You stumble or trip or careen or flail  . . . or defiantly scream silently STOP and freeze  . . . rigid  . . . not even allowing your lungs to inflate. Every single piece of sensory stimuli  . . . every single data point  . . . has hit you like a ton of bricks  . . . all at the same level of priority. Why? Because you don’t have a natural system of executive function. You didn’t come with the encryption key that handles prioritization. 

So here we are, at the Stabler Arena of Lehigh University, with our Team and with our team (Team 41-RoboWarriors. Go bot, go!!!) and the schedule is ...well, not. Sleep schedule? Disabled. Wake-coffee-breakfast-shower? Disabled. Morning routine? Disabled. Do I need to continue? No? Good.

Cause, me? Disabled.

Sensory Processing Overload:

Remember that Target trip? The lights and sounds and smells? The overwhelm and breakdown? 

Well, since Thursday early a.m. it’s been a tsunami for the senses here. From the relative calm and quiet (yeah, yeah  . . . I did say relative) of the jam-packed, caffeine-fueled, body-sprayed, sugar-giddy bus ride that seems to take longer each time, we arrived here in the arena. Thousands of students, advisors, parents and public  . . . with a handful of mascots, cops, military and scouts for good measure. Cheek to cheek and howl to scream. Blaring speakers. Flashing lights. Bots on speed. Students possibly also on speed. The volume is so ramped up that even the sensorily-challenged can feel it in their bones. The concrete floor practically pulsates with it. There’s scouting to be done, on our little handheld screens, and matches to analyze, and the jumbotron flashing ever-changing stats  . . . all competing with the overhead speakers and the emcees and our team advisors. Planted in too small and too short stadium chairs where the hard plastic cuts into back and thighs at equal intensity. Where legs have to be folded at accordion angles until the muscles scream for relief and you untangle to find a new suitable knot configuration. Where the constant stream of traffic of team members coming in and out means getting up and out of the way seemingly every time you’ve finally found a measure of comfort. It’s a battlefield, and I’m not just referring to the field where the bots are battling. Choking on air that’s at the same time too dry and practically sopping with teenage sweat and hormones. Pressed in like sardines. Deafened by the roar and wincing from the shrieks. Body temperature in constant flux. Face mask straps digging in. Team uniform scratching the skin with its coarse fabric. Nauseous from so much sensory input and adrenaline and caffeine. And straining…at all times…to focus down to one little pinprick of light in all the raging fireworks of sensory stimuli, to find out the bot to scout and mark its stats. There’s no off switch and no relief…just a constant barrage of attacking input (at a pace that puts our bots barrage of cargo to that high hold to shame!) that slowly wears you down to a quivering exposed nerve.

Emotional dysregulation:

Coupled with all the chaos of crowd activity is the very real emotional over-drive and override that comes par for the course with any event, no matter “the size” or the perceived import. Similar to sensory overload, emotional dysregulation means all those highs and lows and adrenaline hits…well, hit…at the same time and at the same very important level. So sitting here in the stands with the team, invested in our bot’s performance highs and lows, means a flood of every emotion in overlapping waves.  Drowning here, and no one knows it. The only option for deliverance is to just give in to the total system failure…emotional, not robotic (Go Team, Go!) and sink into the deep of numb.

Numb.

Gray rock.

Expressionless.

Not an empty shell, though from outside appearances it may look that way, but, in fact, a shell so compacted with emotional data that it’s become a black hole.

By the time a match ends and the scores flash our win across the screen, the fight to remain afloat is long since over and the surface you see is still and smooth…and empty.

~~~

But when all is said, it is April.

A month in which your attention is turned to the autistic community, and perhaps our only opportunity to be heard and seen and read.

So, needs must.

We speak and write and create and produce our advocacy…our experiential expertise…

for you to consume and adapt to  and learn from…

no matter our other obligations…

no matter the cost.

We’ll spend May in the fetal position.

...normalcy and the abnormal queries...

 “Do  you ever wish you were normal?”

“I am.”

“No, I mean, really normal.  Not, like…this is normal for you, so…”

“I am.”

“But, you’re autistic.”

“Yup. Autistic. Normal.”

“Sorry, I don’t think you understand the question..”

“Oh, I do. You don’t understand the answer.”

Normal is not synonymous with neurotypical.

...see us...

From our team:

 It’s not contagious.

It’s not learned.

It’s not transferable.

 Spending time with autistics won’t make you autistic.

(It will, however, put you at risk of developing a relationship that enriches your life with unique new perspectives and, quite possibly, a surplus of hyper-niche related information.)

Your child sharing a classroom with an autistic peer does not put them at risk of contamination.

(It does, however, increase their risk of developing into inclusive, empathetic adults who seek out relationships that will allow them to continue to learn and grow, with individuals who are different from them in a multitude of ways.) 

Mirroring of tics, speech patterns, and even stims (individualized self-stimulatory behaviors which serve as grounds) may and likely will occur.

(Just as with any social interaction, humans adapt to what is presented to them in terms of environment, language, physical presentation, and a myriad of other details, and more often than not these are temporary ‘adoptions.’)

We are not alien.

We are not a virus.

We are not animals.

We are the Autistic.

We are the Neuro-Divergent.

We are…as you are…wholly and completely our unique, individual selves.

This April, see past the fear-mongering.

See past the functioning-labels.

See past the clout-chasing.

See us as . . . US!

And stand by us as we find our footing and share our stories and fight for the right to be respected, to be accommodated, to be included.

...my words > your understanding...

 From our Team:

We’re four days in to April, and I’m already running out of steam.

Reality check:

Consuming the laborious efforts of autistic advocates and then having the audacity to argue with them in the comments section because your neuro-typical self can’t be bothered to “do the research” is 100% equal to silencing the oppressed.

• We have, for far too long, been driven ‘underground’ and run off our own homefield by the very loud voices of the righteously indignant non-autistic advocates.
• We have, for far too long, been hit on all sides by never-ending requests and requirements to reframe our communication to better suit the neurotypical narrative.
• We have, for far too long, been purposefully and with intent exhausted of our own mental energy by the needless nonsense and the relentless justifications of those who insist that the puzzle piece is “doing such good” and that families affected by autism matter so much more than our actually Autistic selves/voices/work.

And for what?

So that we can spend the entire month of April being closed in all sides by blue lights,

and puzzle pieces,

and practical strangers (if not the actual bullies who’ve harassed us in school for years) thinking it’s completely appropriate to barrage us with questions about being autistic.

What is this thing you call privacy?

Oh…it only applies to you.

Got it.

#headdesk

Reality check:

Autism is Neurodivergence.

Neuro-Divergence.

Divergent:adjective

• the process or state of diverging:
• a drawing apart (as of lines extending from a common center)
• DIFFERENCE, DISAGREEMENT
• a deviation from a course or standard
• (of opinions, views, etc.) different; no longer similar

Divergent. The very state of being different.

Autistic. The very state of being different.

My words

don’t need to be altered for you to better understand them.

Your understanding

needs to be altered by them.

...it is also ok...

From the mother:

My quick word to my community?

It's okay to only now realize that your good intentions were ill-advised and doing more harm than good...so long as you willingly course-correct.

It's okay to walk back on things you've said and posted and believed...and, in the light of Autistic truth, disavow those ideologies and delete those posts and shares and photos and videos.

It's okay to apologize.

It's okay to move forward in ways that support and amplify instead of redirecting or muting.

It's okay to learn and grow.

“What a perfect moment in time it is to sit silently, with open ears and open hearts, and to listen to and learn from those who are living in the world we've created.”

...it is ok...

From the autistic:

 Just a quick word of advice to my community during this month of April.

It is ok to be silent.

It is ok to "go dark".

It is ok to walk away from the whole steaming pile and not offer to help put it out.

You can unfollow people in your feed.

You can mute individuals and groups.

You can disable comments.

Do what keeps your heart intact and your soul safe.