April: Dollars vs. disappointment...

 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.