28 February, 2019

...this...

This.
Was 15.

It was all the ups and downs and highs and lows and everything in between, of a teenage year.
It was trips to sights unseen and to old familiar locales.
It was new foods and experiences, and favourite meals and activities.
It was ice-skating, and wave-crashing, and shoveling out with the power out.
It was frustrated tears and shouting voices and the sweetest hugs.
It was school days and sick days and mental health days.
It was sleepovers and sleepless nights.
It was hours and hours of schoolwork and homework and therapies and volunteering.
It was practicing and performing. Composing and rewriting. It was concerts and shows and trophies.
It was honor rolls and graduation and the start of freshman year.
It was meetings and conversations and arguments and concessions.
It was passion projects and collaborations, solo creations and teamwork.
It was...
...being recognized as a creator by an invested teacher and her alumus, and supported in the pursuit of his goal so he could launch his first business:
https://www.facebook.com/TerminusIndustries/
https://nightstrike.wixsite.com/terminus-industries
https://www.shapeways.com/shops/nightstrike-s-customs
...stepping back and allowing him to step forward, trusting wholly in his capacity (emotional, intellectual, eloquence, passion, wisdom, experience...the list goes on) to advocate for himself and for those following in his footsteps. It was sitting in awe as he loudly declared that indeed "Different is NOT Deficient and Autism does NOT need to be cured", stating clearly and effectively his absolute truth and taking a stand against his superintendent, his school district, and anyone else who is fool enough to believe his autism renders him "less than" in any way:
...watching with our breaths catching in our throats and pulses racing and nerves on fire as the world took notice:
https://www.facebook.com/leanna.wellerding/posts/10156638660776614
...and as his words, and his truth gained momentum, spreading across social media platforms and continents:
https://www.facebook.com/…/a.82943062711…/1662577893798081/…
...discovering that we both were, in fact, experts in our areas of knowledge and experience:
http://www.2enewsletter.com/article_2018_5_DoesDifferentEqu…
...letting the tears of pride and joy and triumphs hard-won fall freely:
https://www.facebook.com/leanna.wellerding/posts/10156709990041614
...falling back on the teamwork that has brought us thus far and branching out into new directions as guest speakers and realizing the experience created the capactity to advise:
https://www.facebook.com/leanna.wellerding/videos/10156729001876614/
https://www.facebook.com/leanna.wellerding/videos/10156729009546614/
https://www.facebook.com/leanna.wellerding/videos/10156729014116614/
https://www.facebook.com/leanna.wellerding/videos/10156729014651614/
...and taking what he's learned of science, combining it with faith and finding his way through the tough questions:
https://www.facebook.com/leanna.wellerding/posts/10156960651356614
...and so much more!
It was a year. A whole year of my being lucky enough to be along for the ride. A whole year of every conceivable, and staggeringly many inconceivable, moments of joy and suprise and pride and delight.
It was.
15.
And it's over now.
Welcome, 16!


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27 February, 2019

... it's already over and i've barely even begun...

Somewhere between the chaos and the calm, another year ran out.

I've seen the date on the calendar(s), circled and bolded and decorated in exclamation points.  I saw it at the start of the year, when first my pen began filling in all the empty boxes of future days.  I saw it, and my breath caught for a moment as I sensed its nearness.  Its inevitability.  Its finality.  I saw it and my hand stilled, pen hovering.  Then the clock started up again and the breath expelled and my hand guided pen to paper to write out

!!!J-Bug's 16th Birthday!!!

I saw it again when I pulled down the January page from the fridge door, and straightened the remaining stack.  There it was.  Startlingly conspicuous.  Heavy handed in the printing.  The lines etched deep into the paper.

It was...
a reminder
a warning
a dare.

It was a reminder that all too soon, my 15 year old would be gone.  Simply gone.  In and out of existence in one tick of the clock.  One moment here and familiar and oh-so-loved.  Next moment, nothing but memory.  It was a reminder of every single moment of high and low and in-between that had made up the days since 28.February.2018.

It was a warning to prepare.  To ready my heart and head for something new...someone new...someone 16.  It was a warning of change to come and doors to close and things familiar to put away and become estranged from.

It was, more than anything though, a dare.  A dare to fill up every moment of the remaining days with enough substance to last the rest of forever.  A dare to make it go on, this 15th year, even as it sped toward its inevitable conclusion.

It was all those things...that notation.

And now?
Now...
It's tomorrow...
And I'm heartbroken to say goodbye to him...
And eager to meet him...
As I look at the calendar now, I see the date and the years all swirl round in my head...a series of numbers and question marks...all those blank boxes of the future...of 16 and 17 and 18 and 21 and 25 and 30 and so on...
...of years I can't even begin to imagine.


This is not what I imagined it would be.  Not what I dreamt up when I was pregnant, hand cradling belly and smiling serenely in the daze of hope and promise that an unwritten story offers.  It's not what I prayed for when the view darkened and my world went silent and the narrative was in the hands of doctors and specialists.  It's not what other mothers promised me; their experience and wisdom and humor on the tips of their tongues.

It is not what I imagined at all.

It is deeper and richer in hue.
Louder in volume.
Heavier in weight.
Limitless in import.

It is everything.
But...beyond.
It is pushing past the limit and diving deeper and dredging up far more.

And it is changing.
His changing sparking my own.

Each new year as he grows into a new version, there are new things to discover and learn and experience.  There are new pursuits to master.  New hobbies to familiarize myself with.  New paths to follow.  New risks to take.  New limits to break.

It's not what I imagined at all.

I thought I would be the one leading the way.
Instead, I follow in his footsteps now.
I go where he pushes me.
I scout out the new territory he wants to explore before returning to let him guide me through it.

And I clench my fists so my hands stay empty.  I let him step off without my hand to keep him steady.  I drop back a step or two.


And I wait for that inevitable moment when he does look back and, having seen it for himself, invites me to join him...
~Leanna









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...there's a whole (world) in the bucket...

Some of you may recall that last year, directly after his 15th birthday, I shared a "Bucket List"
of things I hoped to do with my son in the coming (now closing) year.  As I wrote then, I write these every year and pin them up as a reference point of sorts for those 365 chances to get it right.


Now here we are, mere moments...minutes..breaths away from tomorrow's birthday festivities and the final tolling of the bell.  Time to check in, don't you think?  Time to cross off the things we did do and see the ones we missed out on...
15 for 15:

  1. Finish setting up his new business
  2. Fill up the calender:
    1. Zip-Lining
    2. Hiking 
    3. Camping (err...maybe in a cabin???)
    4. Spontaneous road trip
    5. Canoeing, or rafting, or tubing, or all three!
    6. Work on that ice-skating!
    7. Fishing or crabbing, or both
    8. Use the library passes to check out new museums
    9. Take the train to a new destination
    10. See a Broadway show
    11. Rock climbing
    12. Roller coasters!
    13. Water slides!
    14. Biking
    15. Take a class together
  3. Let him teach me how to 3D design
  4. Collaborate on some advocacy pieces, written and/or filmed
  5. Switch out the nightly tv episode for a game at least twice a week
  6. Take a walk together every day, no matter the weather. (Coats? Umbrellas? Flashlights?  Good to go!)
  7. Cook dinner together once a week
  8. Let him make breakfast once a week
  9. Stay overnight at a hotel just to use the pool and order room service
  10. Volunteer together
  11. Build a piece of furniture together
  12. Try geocaching
  13. Try our hand (and eye co-ordination) at golf
  14. Waste a day playing arcade games
  15. Put him in charge for a week in the summer: have him pick the groceries, plan the meals, choose the activities!  Don't forget to be a good sport...even if he forgets that you NEED coffee!

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...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.
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...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.


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...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)

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...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


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