...Night to Shine 2019...

Crossposting  one more piece here.

"Thank You" hardly seems to encompass our gratitude to Stonecrest Community Church, Tim Tebow, Join the Night to Shine Team, Tim Tebow "Night to Shine", Fitness-Essentials and all the volunteers, providers, caterers, service personnel, etc... (Please tag yourself if I have forgotten to mention you!) whose combined efforts created last night's "Night To Shine Prom 2019" at Stonecrest Community Church here in Warren.

As you can well imagine, the path of parenthood when your child is disabled is fraught with concerns. There are the very real, very present fears regarding developmental milestones, physical capabilities, intellectual hurdles, effective communication, etc... The list goes on infinitely, as each disability and its co-morbid conditions presents differently for each individual. But above all these, overshadowing us as we sit in 504 and IEP meetings...as we ferry our children to doctors and therapists and service providers...as our days revolve around adjusting and accommodating and advocating...there is one common concern to us all...

"Will my child be accepted for who he/she is? Will the world make a safe space for him/her? Will he/she be included? Will anyone else ever see past his/her disability to the WHOLE-the intentional-the perfectly imperfect and imperfectly perfect person he/she/they/we all are? Will my child have the same chances that we all deserve?"

These. These are the questions that percolate in our minds at 3am. They are the questions we can't set aside. They are, as I have said to my friends, the constant fear between each heartbeat.

What you would have seen (and maybe you did) had you been in attendance at last night's event, was an answer to those fears. Albeit, a temporary reprieve, but a reprieve nonetheless. We parents assisted our children and young people with wardrobe choices in advance of their big night. We helped them carefully select their dresses and tuxedos and suits. We set up hair appointments and makeup sessions. Some of us blocked out time for shoe shining, or for a quick adjustment at the seamstresses. We encouraged our children as they prepped for their grand entrance. And we, or at least I, blinked back the tears and choked back the emotion as we headed out the door with our beautiful, prom-ready children. We knew, full well, that this was our moment as much as it was theirs. We knew this moment was a gift to us; one in which we got to be "just parents"...not special-needs parents. Just parents, sending their children off to prom, knowing we didn't have to breathe in and out our fears for their safety or welcome or acceptance or inclusion. And so we arrived at Stonecrest last night, we parents and children and young adults. We arrived proudly.

My son, like all the honored guests, was warmly greeted. He was paired with a volunteer. He was escorted down a red carpet, immediately adjusted from a cheering squad to a quiet, welcoming wave to accommodate his particular sensory needs. I watched as they walked down that carpet, and snapped this photo quickly, while fiercely blinking back the tears of pride and joy that sprang up.

I, like many parents, headed upstairs to be welcomed myself to the parent respite area. A warm greeting again, and a warm beverage by way of the coffee/tea bar. A meal I neither had to cook, nor adjust to my child's needs or preference. A massage. A table full of friends, old and new...other parents such as myself, for whom our "language" is a familiar one. We shared "war stories" from our recent IEP meetings and case-managerial conferences. We laughed over the things only we can find funny. Occasionally one or another of us would "sneak" down to get a glimpse of our children, or stand in front of one of the tv screens trying to pick out familiar faces from the crowd dancing the night away downstairs. We proudly shared photos of prom prep with one another, each of us connecting in our shared joy. Each of knowing that this night was enough to carry us through another 364 days.

Thank you, is surely not enough to encompass all that. Thank you doesn't say enough. It doesn't acknowledge the individual efforts that made last night beautiful in every way. The time and attention to detail. The individual and en masse decisions that allowed for each child and young adult to experience prom in a way that was wholly accepting and wholly tailored to his/her needs. It doesn't even begin to touch on the warmth our parent-hearts felt as we stepped in those doors with our children.

I want to make special note of the familiar faces I saw last night. Staff members from the Warren Township Schools that had volunteered their time and energy to our children once again. My son saw his old gym teacher. He saw a teacher who so embraced him (and all disabled persons) for exactly who and how he is, that she was willing to give him this night. He saw his favourite custodian from his elementary years and relished in the familiarity of that face and that smile and that warm, welcoming disposition. That same custodian gave perhaps the most moving, heartfelt and genuinely beautiful speech I have heard to parents later that evening.

Forgive me for getting personal/emotional here, but needs must. I need you all to understand that for this night, disability did not exist. For this night, it was the world as we hope it will be for our children. For this night, it was just ability...just young people being who they are and how they are and blissfully dancing the night away (or in my son's case: talking the night away, in the quiet room, chatting with his buddy about Transformers and 3D engineering and life!). It was prom. It was beautiful and it was heartwarming. And it was a reminder that he, my son, is growing up and out and past my ability to safely enclose and protect him. It was a reminder that there are people out there who WILL embrace him, just as he is.

Thank you to Stonecrest Church and the countless volunteers. Thank you to the photographers and musicians and djs. The television crew. The chefs and waitstaff. The greeters. The sponsors, Thank you to Laura L., and custodian Dave. Thank you to Clifford J. and his team. Thank you to Brynn Stanley. Thank you to all those (again, do tag yourselves and take a bow!) who made this a night of true inclusivity, celebration and love!

P.s.-this is the Warren I think we can all strive to be.

#nighttoshine #nighttoshine2019 #timtebowsnighttoshine

.

...on Night to Shine, respect is fundamental,,,

In advance of the evening, I posted this and shared it publicly.  I share it here now so there will be a source, in future years, for the sharing of it across multiple platforms.


Parents of Warren Township students, Parents of WHRHS students:
Tonight is "Night to Shine", a prom for disabled young people. Across the nation, churches in tandem with the Tim Tebow Foundation will be hosting this event, with the help of local student and youth volunteers. There are several NJ locations, including one right here in Warren. Some of your children may be volunteering as greeters, as buddies, as makeup artists, etc... For that, we say "Thank you".

Please, remind your children that as they volunteer tonight they may see peers of theirs from school in attendance as guests. Please, remind them that as volunteers, they have a responsibility to respect the privacy of those attendees. Many of those young people have not disclosed their diagnoses. Many of those young people fear being "outed".

Our family, and the families of those attending tonight ask that you remind your children that it is not their right to disclose information about those attending to anyone, least of all their peers and schoolmates.

Thank you.

#nighttoshine #disabilityawareness #disabilityacceptance

...one night...

From a January 16th post to my facebook feed:

Two nights ago, after staring into the fridge and contemplating dinner prep, I declared it date night. Mami/J-Bug "date" night. (Yes, I know, he's more likely to take a Transformer out to see 'Bumblebee' than actually ask a girl out...err...yeah..that first thing...totally happened IRL already this past weekend.)

We hit up the local mall for a window-shopping stroll, and a long non-stroll in the Lego store, before dinner. Light banter, school and peer related, kept things lively as J-Bug wittily described the cast and characters of his weekday life. This kid's got a way with words!

By request (ok, maybe a little bit more demand than request!) we did serious damage to a trio of gluten-free crepes...hello Dulce de Leche...and giggled outrageously the whole while, much to the irritation of our dour, newspaper reading table-neighbor.

Then off we marched, answering the siren call of those massage chairs located at the other end of the mall. (There may have been a teeny tiny footrace involved...and I may have totally lost by not quite hurdling over a planter...but I'm not telling!) So there we sat, while the mechanics got "handsy" with us, and talked grand plans, silly schemes and all things Terminus Industries. Finally, wallet empty of singles and backs made of mush, we called it a night and headed back out into the frigid cold.

I thought to myself, as we headed home, of my newsfeed chock full of my 'Girl-Mom' friends and their shopping trips, hair appointments, mani-pedis...of all the photos that I see stream across my screen of all those precious Mother-Daughter moments. I thought of them, and of this night and of my own contentment.

It's likely there will never be a little girl with my dark eyes and sharp tongue. It's likely that my dreams of more children will never come to fruition. And there's peace to be found in even that impossibility.

Because this...this life with this son...
That "date" night with Legos and crepes and massage chairs...
Totally. Perfect.

(*and let's be real...mani-pedis? for this control freak? ha! ain't no way I'm sitting down all zen-like while someone manhandles my fingers and toes! #nofomohere)

...distracted...delayed...and downright deleted...

Consider this a "to do list" if you will.

This post that comes far too late, and says far too little.

I made mention, not here I think, but perhaps...that there was "too much life" going on at present for me to write it out.  That still holds true.  A singular situation with offshoots into what feels like every portion of my life has been at the forefront, and I bite my tongue and silence my tapping fingers so as not to dive directly off the cliff and into troubled waters.

Say what now?

I think there's something to be said for recognizing our frailty, and being wise enough to not rip the bandage off too soon.

So my posts remain in draft mode here.
The page never updated.

The words, never public.

I wait, impatiently most of the time, for "that day".

That day.

The one where I wake up and know, firmly and resolutely, that not only am I back on solid ground but I am more than capable of editing my own words effectively.

Fingers crossed, for now.

And...

Silence...
because my own emotional frailty means I have no filter.


In the meantime, I've not been wholly unproductive.  So this is my tentative toe-in at the shallow end.

I've written a few things elsewhere and decided to bring them home to roost.

Read on...

~Leanna

...snowfall and recall...

I waited for snow this morning.

I stood, hand up against the window, squinting into the darkness and hoping that the faint trace of white I saw on the road was fresh powder.  I held my cell phone in my hand...waiting...willing it to ring..every bit of my attention focused on the hope of a delayed opening.I paused there, at the window, in the dark of early morning, putting off the call of my kitchen and the pressing of coffee and the cooking of breakfast and wished so hard my forehead scrunched up.

But the phone never rang.

Soon enough, I had to admit defeat and move through the motions of our morning routine.  Soon enough, time to go, and the heavens mocked my wishing by sending down one tiny flake at a time as we headed down to the bus-stop.  Even now as I write this, the skies are teasing me...intermittent flakes float and spiral down past the window.

I stepped outside just a few moments ago and felt the bite of flakes on my cheek, that spark of burn from the ice.  I watched as a few tumbled about in the wind, finally settling down amongst the grass.  And I had a moment...one moment of memory...of the first time my son caught a snowflake on his mitten and squealed in delight as he realized its crystalline perfection.

Oh, I miss snow...that snow of his young years.  The snow we caught on our tongues and on our mittens.  The snow that forced us back inside to cuddle up with cocoa and books.

I've no use for the snow today.  No use for the flakes that fall now, too late for delayed openings or early dismissals.  I've no love of the snow that will, inevitably, come and make slop of the sidewalks and roadways.  No love of the snow that I'll spend hours shoveling.  There's no point in that snow.  No eager giggles as boots are laced and mismatched mittens located.  No bursting through the doorway to shake it all off and stand, dripping and exhausted, after playing tag-snowball pelting-sledding-snow angels...

No.

The snow is different now.

Now that  he's a teenager.

The snow is a possibility of another hour's sleep.  It's the chance to get an early start on homework and squeeze in some extra entertainment time.  It's an excuse to get him away from the computer...out into the fresh air...to shovel alongside me.

The flakes fall...the slightest bit heavier now...more substantial.  Each one, falling at an angle, buffeted by the wind.  Each snowflake different than the rest...just as my wishes have become.

I'll wish for snow again.  Snow that covers the world overnight and delays school in the morning.  Snow that lets me tuck the blankets back up under his chin and shush the cat.  Snow that sets his schedule back just far enough for a leisurely breakfast and an extra hug and a startled giggle when the snowflakes nip at our faces as we wait for the bus...

I'll wish for snow that reminds me of those other snows...

I'll wish for snow that wakes up the sleeping boy inside the young man...the snow that makes his mouth twitch up at the corners and his eyes sparkle and a little bit of the old 'him' sneak out to pelt me with snowballs...
                                                                                                                   
                                                                                                                                                         ~Leanna

...(sun)rise and shine...

It is, as my son and I call it, the "season of sunrises".  The time of year when Nature does her very best to encourage us to look up, despite the cold and gray of wintry day to day.

The holiday season has fizzled out and the house seems stark and bare and cold  without a twinkling tree and the cheerful scattering of Christmas décor.  The tree, in a perfect explosion of needles, went out the door on Sunday as Epiphany drew to a close.   We gave it a suitable farewell, and thanked it for its service (because we're weird like that!) before dragging it off to its final resting place in the woods.  I hope it will, as its predecessors have done, become a home to the forest folk...the chipmunks and squirrels and, yes, even the creepy crawlies...as it returns slowly to where it came from and feeds a new life.

As for those pine needles?  I'll be vacuuming them up from corners till June!  

The ornaments have all been packed away carefully, leaving behind just a few glimmers in the form of my reindeer and Kosta Boda snowball candleholders.  (I'm perhaps a wee bit too proud of myself for my ever increasing collection of them...every single one found at a thrift store!)  Green and red and gold, replaced now with silver and blue and snowflakes.  And all those bits and pieces of detritus that we had hidden away, tucked into the closet to make room for holiday décor, have inched out bit by bit to take over every crevice and cranny.  Back again, the paperwork and the Transformers...the schoolbooks and the scratch-builds.  Back again, the permanently half-finished drawings and projects and books.  Back again, the disorder and dysfunction of our too-tiny abode.

Back, as well, is the schedule.  The drill-sergeant of Time and Order.  The early school mornings and overwhelming work loads and all the catching up and making up and responsibility.  The sucker punch, after a slow slide into rest and relaxation, of a full calendar and alarm clocks. 

Here we are...here we all are...but a few days into January, and I am already weary of it.  I'm already counting down the days until spring...ticking them off in my head and on the kitchen calendar.  Planning ahead...way ahead...and trying my damnedest to ignore the here and now.

It's cold and wet and grey outside.  There are far too many windows around me, letting all that gloom inside.  The picture window in the front room...the very one that looked so festive a few days ago...looks out on a world that's barren.  Empty tree branches, empty bushes...nothing but sharp edges and thorns and brown.  Even the poor garland I've left on the window casing seems to be fading away.  And the only relief comes when I've a pot of something simmering in the kitchen and the windows fog up with steam, temporarily blocking the view.  

I make the best of it.  I think so.  I try.  I keep the kitchen warm and bubbly with casseroles and soups and warm beverages by the gallon.  (I'd chance a guess that we're better hydrated this time of year than any other, simply because I'm forever making tea to chase the cold away!)  I pull out all the stops, comfort-wise.  The softest blankets re-emerge from storage.  Throws hang at the ready for shoulders to snug.  The fuzzy socks and slippers wait for tired feet or chilly toes.  Candles puff up cheerily on the tables, scenting the air and chasing shadows.

I make the best of it...or at the very least, I try to keep the cold and gray outside where it belongs.

But sometimes, in this month that never moves past gloom, it seems the cold and gray sneak in when I'm not watching...following me in as I latch the door behind me...finding the perfect hiding spot deep within my very bones.  I, too, become cold and gray.

I, like those barren branches, grow sharp edges and thorns.  I start to become brittle.

By end of day I feel wrung out...lifeless...sapped of energy and purpose and colour.  Something about the sharp bite of winter air just drains me, no matter my efforts to fill up on happy.  The early darkness signals a turning-off in my brain.  Creativity, off.  Productivity, off.

T.V., on.

(No, seriously...what's that about?  I know full well the house is full of all the same engaging entertainments...books, boardgames, craft supplies...now, as it is the rest of the year.  But come January it's as though my brain blocks it out.)

Too. Tired. Must. T.V.

So we slump into zombie mode, staring at the screen, bundled up and bored.

So I close out each night, laying in bed, wondering what's wrong with me that I didn't push harder for something more active and engaging.  Disgusted that I let the cold get the better of me.


And then morning comes.

Not with the alarm that shatters the silence of a still-dark room.  Not with the coffee made in the dim glow of the stove light.  Not with the cooking of breakfast or the laying out of clothes, or even the rousing of son.

No.

Morning comes with the sunrise.

It sparks in the far horizon, glinting off the glass of that picture window in the front room.  It draws my attention from the manufactured brightness of the lamps and ceiling lights I've turned on.

Morning calls me over.  And I direct my son's gaze toward its arrival.

"Oh.  Look. Look there.  Isn't it beautiful?",  I whisper.
Most days he murmurs in assent and stops  a while to look with me, before returning to the siren call of hot breakfast and strong coffee.

I'll stop a little longer there, wherever my tracks were halted.  Stop and breathe it in...chest expanding to draw in the fresh air of a new day...shoulders rising to attention...turning to bask in the glow and feel the warmth that my eyes tell me is just a little bit further down the mountain.

Nature boasts, showing off with a blaze of glory.  Flying in the face of all that darkness and setting the world on fire.  She forces her way out, one flash of glorious colour after another.  They settle in and paint a watercolour against the stark relief of black tree trunks and branches.

And in those moments...those few minutes of sunrise...She energizes us...She wakes us up and gives us reason to find the colour in the day...She reminds us to shine...

~Leanna

...he's got the whole world in his hands...

I posted a photo to my social media accounts the other day.  A photo of my son, holding a dish with two waffle bowls stacked atop one another, with the comment "He's got the whole world in his hands..."  I'll ask his permission later, and paste it in if allowed.  

The waffle bowl maker is new to our household.  A Christmas gift.  An idyllic daydream of homemade gluten-free waffle bowls to hold fruit salads and ice cream sundaes, sparked by an ad in a weekly flier.  A "must have" that we didn't know we needed until we used it the first time. 

P.s.-It's the Dash Deluxe Waffle Bowl Maker, available at Bed Bath and Beyond. 
Okay, so first things first.... #notanad  #notasponsoredpost #shillfree

Now that we've cleared that up...

It's not about the waffle bowl maker...or the waffle bowl.  It's not about food at all.  

It's about that photo, and the comment I wrote with it.  "He's got the whole world in his hands..."

It got me thinking...about the words..."the whole world"..."in his hands"...  

We say of our children that they've:

"The world on a string"

"Endless possibilities"

"Limitless opportunities"

"Open doors"

We tell them that they can dare to dream.

But as I said, that photo got me thinking.  It reminded me, oddly enough, of a video that's gone viral (or at least I think it has) where a simple footrace becomes a lesson in privilege as those participants who don't meet certain criteria aren't permitted to move forward towards the goal.  They're all allowed to run, of course, when the buzzer sounds...but the starting point is different for each individual with a select few...a select privileged few...far closer to the finish line right from the start.  For those few, it won't take talent or strength or stamina to win.  For those few, it won't even take speed.  They're so close they can't help but stumble across the finish line far sooner than those left behind at the start.  And why?  Why are those few granted that privilege?  In the video, it's because of what they were born into.  A certain financial status.  A two-parent home.  A family history of educational achievement.  In other words...

Status. 

In the case of those privileged few, they were allowed to move closer to the finish line regardless of any achievement on their end, but rather because of things they had no control over.  Simply put, they were given a jumpstart by the mere accident of their birth.

In counterpoint, there were runners left behind.  Some all the way back at the initial start point.  They, too, were subject to the folly of rules that decided their fate based solely on circumstance.  Sure, they could still participate.  They could still give it their all.  They might even be the fastest runners that day.  But, barring some miraculous event, no matter their talents or strength or stamina, they could not win.  They couldn't make up in skill, the benefit of that jumpstart.  No matter their speed, they were too far behind to ever catch all the way up...too far behind to be able to overtake those privileged few...too far behind to have a fair chance...

Privilege has been on my mind lately.  Privilege and status and circumstance.

And worth.

Or, rather, the judgment of worthiness and what parameters define it.

It's been on my mind as I try to level the playing field in some small way, for two children whose circumstance...whose accident of birth...hasn't afforded them much, if any, privilege.

It's been on my mind as I try to come up with meaningful, beneficial ways to increase their privilege. 

It's been on my mind as I can't help but compare their opportunities, or lack thereof, to those my son has had simply because he was born to me.  

I think, as a mother, it's nigh on unavoidable to not feel the heart bleed a bit for children who don't have what you have been able to provide for yours.

And then I posted a cute photo with a twee comment and sparked a whole set of inter-related queries in my own mind.  Because...

It's not true.

He doesn't.

Regardless of his talent or strength or stamina.  Regardless of his skill.

Regardless of his daring to dream.

He doesn't have the world in his hands.

There are limits...on possibilities, on opportunities, on open doors...

Limits based solely on his circumstance.

Limitations, that not only slow his race but in some cases, completely impede it.

Limitations, that define the course of his life by whatever he is privileged enough to have been born into, be raised up in, learn or earn.  

Limitations that define the scope of his dreams around his circumstance.

Years ago, I told his middle school case manager that one of my biggest parenting goals was to make his world as big as possible.  I want him to experience as much of life as is possible.  I want him to see everything the world has to offer...new places, new faces, new stories...   I want to introduce him to the unfamiliar at every turn.  I want him to never feel limited by our finances or location or status.  I want for him to feel limitless.

I want for him to feel privileged despite his circumstance.

I want his dreams to be undefined...to be free...to grow so much bigger than the walls of the world we live in...so much bigger than the lines on the map that define where we've been...so much bigger than my bank account or my time or my knowledge and abilities and skills and creativity.

I want him to be privileged beyond the circumstance of having me for a mother.

To be undefined by what I have made of this life.  To be able to expand far past what I have been able to provide for him.

I want him to have a level playing field.  To have the same starting line.  To have the same chance.

I want it.

But it's not reality.

It's not attainable, just for the wanting...the wishing.

He's growing up, confined by the dollar amount in my bank account and the walls of our apartment and the symptoms of his autism and the experiences I am too afraid to pursue.  He's growing up, limited by me.

No matter how big I try to make his world, there's so much more out there beyond what I can provide for him or introduce him to or set him on the path of.

There's accident of birth and circumstance and status and privilege.  There are doors that he'll never even know are closed, because they're behind walls he'll never see over.

He knows something of privilege.

He knows that we are poor in comparison to some and rich in comparison to others.  He knows we help others often.  He knows sometimes we've needed help.

He has two friends whose status far exceed ours.  He's hung out with them at their homes and come home, both marveling and morose at the notion that our whole apartment could easily fit in a bathroom or walk-in closet or...

That what in his world must be treated as a rare indulgence is commonplace to them.

That what I must save up to be able to afford is an easy, pocket-change purchase to them.

He lives and attends school in an area steeped in status.  New money and mcMansions interspersed with upper-middle-class comforts.  Children raised by nannies.  Young people who, at 14 and 15, have a sense of entitlement that leaves little room for empathy or inclusion.

 He's been picked on for not wearing the trendy sneakers.  He's been made fun of because his gym shorts aren't a brand label.

He competes for gpa rankings and academic honours with students whose privilege affords them private tutors and testing practice.

They've never even seen his starting line, much less been there.

He knows something of privilege.

He knows well the accident of right-time/right-place that put a 3d printer in his workspace so he could jumpstart his dream business.

He knows the trips we've taken and items we've purchased and entertainments we've pursued.

He knows the security of a roof over his head, food on the table, clothes on his body, heat and hot water.  He knows the certainty of those clothes being clean and well-cared for and seasonally appropriate. He knows that he'll have shoes that fit properly and school supplies that serve his needs and medicines that assuage and prevent and heal.  He knows that he will not go hungry.

He knows the comfort of a mother who is always available to him.  The fearlessness that comes from having a parent who advocates for him at every turn.  The confidence that comes from her...me...always making him a priority.  

He knows something of privilege.

He hasn't been merciless to a parent strung out on drugs.  He hasn't been abandoned or neglected.  He's never been abused by a parent who struggles with emotional and mental disorders.   He hasn't been pulled from his home by CPS.  He hasn't worried that he'll lose his family.  He's never been concerned about when he'll get his next meal or if there will be clothing to wear or if he can sleep without being bitten by pests.  He doesn't have to fear eviction.

He knows that he is privileged.

And he knows that he is not.

He's got the whole world in his hands...the world he knows...the one I have painstakingly crafted and created for him.  He's got the world of my resources and abilities...of my circumstances in his hands.

But you and I both know that world is always, forever being defined and limited by others...by those whose privilege makes them feel they are entitled to judge his worth. 

I hope he dares to dream far beyond those judgments and those who make them.

I hope he skips past privilege and creates his own starting line.

I hope he never has to spend a moment 'catching up' to those who've been privileged enough to start out ahead...and if that isn't possible, I hope he's not exhausted by the race he started running before them.

And I hope that my efforts to afford those two children some privilege of their own will succeed. 

~Leanna

Permission, granted!

And, if you haven't seen it, here's the video that I mentioned:

https://www.youtube.com/watch?v=FBQx8FmOT_0&fbclid=IwAR0oMhI06SwG4Cp55JCzNucc5cYnlUqeXGdsQpaLGZb7lB_D6K_PZjbnEK0