...only a year and then he's gone... (Part 3, 11 through 13)

11)

Does it get any better than this photo?

Eleven years old...right on the cusp...

Balancing act between childhood and young adulthood.

And yet...still susceptible to the wonder and whimsy of youth!

What fun it is to watch him try new things. Though as he's gotten older, his reluctance has increased exponentially. We had to wait until all the other children had vacated this activity before he'd go near it. But then...oh, but then...he hit the target on his first try!

Brilliant. And curious. And bold in the face of opposition.

Determined. And resilient. And willing to try.

There is untold joy in the raising up of a unique mind. Rearing a child whose intellect surpasses the masses. As his teacher, I am taught. As his mother, I marvel.

And often, I pause in a quiet corner of my mind and think back on those early minutes, moments and days when it was all still just potential. I think back on the silence and despair of his early diagnosis...on the tiny little milestones that made up a conquering battle...on the therapists and doctors and specialists who challenged and encouraged.  Brilliant. And curious. And bold in the face of opposition.

Determined. And resilient. And willing to try.

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12)

Life with J-Bug and Henry is easily summed up in this singular photo.

I'm never quite sure which one is real, and which imaginary.

No recap would ever be complete without both.

And no coffee cup of mine is ever safe from either!

Here, at the dinner on his 12th birthday.

This. The real gift.

In a world that can send his senses reeling, he seeks comfort in my arms.

And in a world that so often dismisses me as 'less than', I find myself complete in motherhood.

This 12th year never let up, nor did he. 

Imagine, if you will, the courage required, to get up in front of a roomful of kids who have teased and taunted...

And in the silence, finding the strength to play the first note.

The whole package.

What a delightful surprise it was when we received notification of this award. So often in his life the focus has been on his fantastic academic achievements and intellect.

But I, as his mother, I knew that there was so much more to him. I knew of the creativity. I knew of the unique perspective on the world. I knew of the artist on the inside.

And finally, someone else saw it and recognized it.

What an enormous "win " this was for him...to earn recognition for art. To be praised for what he loves to do.

Every day he takes his drawing pad with him to the bus stop and begins to create, drawing from both sides of his brain to create perfectly executed Transformers designs...blending his intellect and creativity as he goes about engineering each piece.

Against what some would call 'all odds', sympathy and empathy pulse throughout him. This is a child who sees a need and aches to fulfill it. Of whom teachers marvel at his uncanny skill for knowing when they are having a hard day.

He knows his diagnosis. And he knows the hard work that has gone into getting him this far.

More astonishingly, he remembers and is able to put into words how trapped he felt by his disability when he was younger and incapable of expressing himself.

Time and again I have gotten to watch from the sidelines as he does for others what I have done for him. I have watched him intercede on the behalf of other disabled children, explaining to their parents how best to understand them and explain things to them. I have watched him be the only one able to calm down another autistic child.

So this… This came as no surprise. This miraculous son of mine  strove create a device that would help other disabled students and their teachers.

What was the surprise? That every single adult saw his project encouraged him to market it… For real!

To say I used to worry is a laughable understatement. Worry was my go-to state of being.

And chief among those worries? The debilitating fear that he would never find his niche, his people, his friends.

More the fool am I.

I only had but to listen...to watch...to see he had found just that. His version. His joy. His friends.

A cat. And a stuffed raccoon.

Never were there better friends than these!

Another barrier broken.

Here at our local library, I've witnessed so many miraculous moments. Truly, his safe place to explore options and take risks.

At 5, the very idea of empty space between objects sent him into a panic. The stairs without back risers at our pediatric office were utterly horrifying...full blown panic attack every time. Balance beams induced tears.

My arms were always full. I carried him more often than not. Until he hit my weight. Even now, a negative stimuli will send him crawling up me like a squirrel on a tree...and my arms will strain to gather him up...though he now outweighs me by 10lbs!

But I digress...

Here, look again. A parkour class at the library. A challenge to overcome.

And a boy spreading those wings of his and soaring!

In the quiet moments, I see him search.

I watch as he observes and files his observations away. I note the moments he connects one piece of information to another.

He stops in the midst of everything and the whole world sharpens and clarifies.

We. Did. It!!!

Graduation from elementary school and the knowledge that he had surpassed every grim foretelling of his early diagnosticians.

The boy they said would likely never speak...was chosen to give a speech. In a room full of kids who had teased him every day for 6 years, he strode to the podium and read his words out confidently.

I wept. I filmed the whole thing shakily as behind the lens, tears poured down my face.

I have been the luckiest.

Mind over matter

-or-

When it all finally comes together

At 12, he learned to ride a bike. And I got to be 'regular mom' for a moment...'regular mom' who lets go of the seat and let's go of her child and watches him fly!

Physical therapy. Occupational therapy. Motor skills therapy. Sensory adjustment. Proprioceptive input. Countless words for countless challenges.

And in this picture...the very moment it all fell away and was just childhood.

So often I have felt as though by being raised by me, he's missing out...

But as I look through photos (oh goodness, so many photos!) I am astonished by all the full moments.

So just now, just for today, I'm inclined to say the first 12 years were well-lived after all. Chock full of adventures and explorations.

This is family. This is complete.

This is what it looks like when everything falls apart, only to be built back up into what it should have been from the beginning.

I have never..will never...be more complete than I am on this team of two.

In this year I have begun to fall back a step or two as this young man moves forward into the lead position.

It seems illogical that I should still get just as excited about every success as I did the very first time. But you must remember, that the very heart of me still remembers all of the struggle....all of the "no"s.

And more importantly, I know all too well from my own experience that the conquering of one challenge increases the difficulty level for the next.

So we rejoice in every success. We celebrate every achievement. We indulge ourselves for a short while, before putting the armor back on and gearing up for the next battle.

In this 12th year, he leapt ahead. Forever seeking out new knowledge. Forever challenging himself to achieve something new.

And far more importantly, growing up gracefully… With an open heart and mind willing not only to listen to good advice, but to try it.

A phenomenal moment as one of my favorite authors saw in him a spark of potential that she wanted to encourage and mentor, even if just for a few minutes time.

If there is one single picture to sum up the work that goes into being this one's parent, it is this.

His is a brain that knows no limits, and a body whose boundaries are defined by his diagnosis.

My job, then, is and always has been, to be the toolbox full of solutions.

At 12 years old, he had all the answers but couldn't put them on the page. At 12 years old, he needed a stenographer.

As the door closes behind this boy at 12, I can't contain my heartache for the loss or my pride in his future.

I shall miss him always, in the deepest part of my heart, this boy at 12...just as I miss the 11 year old, and 10 and all the boys he has been. They are imprinted on me. Each one. Each version with his own challenges and successes.

I find myself looking for them in him from time to time...and more often than not, looking for some future young man he may become.

But he looks forward...so I must follow his lead and do so as well.

When he was a stumbling little boy, I cautioned him every time we went for a walk...every day he heard me say "look where you're going, not where you've been".

And in this picture, it's oh so obvious that he is doing just that...

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Prior to J-bug's birthday last year...these words decorated our fridge and spoke volumes.

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13)

And just like that, before I've even caught my breath, the first 13 are over and done. And now I can only look back through the lens at those moments of miracle, marvel and memory....

13 brought fresh perspective, fresh outlook, and fresh challenges.  Teenager-hood came on in fits and starts...one minute my little boy, the next pushing and pulling for power.  We had to revisit communication, both of us learning (painfully) how to find new respect for one another as our roles changed.  I had to adapt to being needed less. and he to being less needy.  

A hard knock life, indeed! 

Another year older, but still true to those early glimpses of compassion and empathy.  He sought out new ways to help those in need, particularly those with special needs.  13 saw him develop as an advocate for those who needed a strong voice.  I watched in amazement as he would intervene between other children on the spectrum and their parents, translating for them as I had once done for him.  And the look of "the lightbulb moment" on those parents' faces?  Priceless!

A young man and his first tuxedo.  Quite the "coming of age" moment, as we prepped for a friend's wedding in Georgia.  We took a break from school and road-tripped our way down South over two weeks time for the celebration.  And, as I repeatedly told friends when we returned, it was "as though he packed his bags and then took out his autism and left it at home", and I marveled at how open and curious and receptive he was.  

Better still, this photo, from our hotel room right after the wedding. 

He, alone, can make me laugh like that!

Glimpses of who he'll be.  The man growing right up and out of that awkward phase.

A summer wedding, and the opportunity to dance with this handsome fellow.  Captured on film was our first attempt (minus all those years before where I did the dancing while holding him on top of my feet) to, of all things, the song his father and I had danced to at our wedding.

And after, a rush back to the table to escape the photog!

I wish I knew what I was saying at just this moment.  I look at this photo and see, again, a true depiction of our life.  Me, clearly trying to admonish...while he charms his way out of it!

 

13 years worth of change have taken their toll on our old habits and haunts.  New locales and new adventures always beckon, as I strive to enlarge his world far past the confines of his autism diagnosis.  Looking back now, I see the frantic pace I've kept us going at...never getting too comfortable or too complacent...always moving onward and upward.  It's as though each challenge he overcomes is a stepping stone for the both of us.  

Never yet has he wavered from his passion for Transformers, or his creative pursuits.  By 13, he'd realized his dream of becoming a design engineer was well within reach.  And perhaps more importantly, he learned to tune out the naysayers completely.  Art awards, honor rolls, educational commendations...they flew by one by one, all these "wins" piling up around him as he came into his own.  Hard-won friendships buoyed him through the difficult school days, and I watched somewhat helplessly as his new independence began to pull him away.  I remember wondering, keenly at times, if the pull away would always hurt so much, would always leave such a desperate ache.  And in those moments when I felt it most, he'd suddenly come to me with his artwork, asking for my opinion and gifting me with a few moments being needed once more.  

But even here at almost 14 and every bit the young man, a part of him remained oh-so-recognizable to me.  The sweet little boy who loved his Mami and his Henry.  The darling little cuddle-monster who used to nap in my lap.  Even now, all those other hims he's been are still in there, just under the surface.  I see them when he's tired, and when his day has been long.  I see them when he's caught by surprise, gone giddy with delight for a moment before he tries to toughen up act nonplussed.  Those hims he's been curl up to me for a hug when the day is new, and whimper a bit when his homework is taking too long.  I pull them to me, those moments, knowing they are fleeting.  I thank him silently for letting me reunite with all those precious memories.  And I marvel at the way time has changed that infant I once carried.

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~Leanna