Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Saturday, November 30, 2013

home vs Home

So the distinction here is the capitalization.

From the outside is it a small distinction, but from the inside it is pretty darn huge.

It started when I was little.  My immediate family unit lived in California, quite distant from the extended family in east Tennessee.  During the school year, I lived at home, with my mom and dad and brother and dogs.  I built a life there, a school career, life-long friends, work experience, scouting experience, relationship experience.  There are LOTS of things I learned about how to live in California. When I got older and left home, it was clear that my essence is shaped by living there, by having a home there...

But during the summers, we came Home.  We spent months "back east" with the grandparents and cousins and history of it all.  It was clearly an effort by my parents to tie their present to their past, to show us where they came from, to help us build a sense of personal history.  It was all about what southern Appalachia is...

When I reached the age to leave home, I knew I needed to come Home.  I applied to all southern schools, and ended up in the Shenandoah Valley.  At 18 years old, I named it for the first time:

My older cousin & I are driving through east Tennessee from my grandmother's house to another cousin's house.  The cousin with me had just discovered us - (her story is hers) - and had been raised in New Jersey.  She asked me about who I wanted to be, what I was Iike...

I looked out the window at the passing farms & hills...

"I do not know for sure where I will go, but I know that I need to be Here.  These hills, these trees, these mountains - they call to me.  I know that my soul has always lived here..."

"That just triggered chills down my spine.  Wow.  That is True."

And it was.  It is. I conozco these mountains...

I have now been in these mountains for 20 years.  I love EVERY minute of my drive on I-81, every time I make it.  I went to camp in the North Carolina highlands.  I keep finding myself returning to the mountains for trips, exploring the nooks and crannies of the Great Smokies, Pisgah, Cherokee, the Blue Ridge.  I live now in the Blue Ridge, and we explore Skyline Drive every chance we get - have done so for nearly 10 years.  Even when newly married, living in the city, the mountains called to us - we "went for a drive" every other weekend.

When I was maybe 14, in that time when you are trying to define yourself, my friend asked me: if you were a geographical feature, a type of terrain, what would you be?

"Water!" I blurted out, but what my mind saw was bigger:
A lake or river, wide enough to reflect the sky, deep enough to harbor ecosystems, caressing the mountains, carrying little bits of places it passes to share and deposit in future travels.  Babbling, giggling over and around rocks holding ancient information, while trees watch patiently, and life scurries over, around, and in me.  I saw mountains towering over the waterline, the birds who swim at the surface, and my mind sank into the murky depths, with hidden crevices of lurking fish and turtles.  I saw in my mind every stream we had crossed hiking the Smokies, the TVA lake that my grandparents lived on, what I later encountered canoeing the Shenandoah and Potomac...

I wrote about that Old Mountain Magic a few years ago, when the spring hills conjured voices for me.  

On Thanksgiving day this year, I drove that all day drive down I-81 to I-40.  I watched the sun rise on one slope, and the sun set on another.  I rode ridge after ridge, up and down... In these winter months, you can see the mountains themselves, the stone jutting through the tangle of dormant plants, the pastures that have been carved from the hills have that monotone hue that lets you see the texture of the place.  The stone waits, patiently catching and absorbing every snowflake, storing their glory for a time to come.  Every time I looked out my windows at those undulating heights, my hands felt like they were running through velvet folds, my lips across satin sleeves.  These mountains trigger my most heart felt sensations (my fabric habit)...  My body ached with the need to just be in these mountains, the pleasure of remembering and imagining time watching them...

I love fall too, when the wisdom of the trees turns to sleep, and their colors make the mountains look like piles of MnMs.  When each and every leaf becomes a single note in the epic opus of the change of seasons!  Each is masterful, a miraculous statement of glorious color and shape, worthy of collection and display, begging to be honored.  The season goes through movements like an orchestral masterpiece, with colors shifting from tip to trunk, until the music ends as a sleepy blanket, covering the earth, promising to nourish the the coming awakening...

When spring comes, my heart SINGS!!!! It is as if I can hear the buds pushing their way out into sun - like when a baby drags itself across the floor, or children get restless 5 minutes before recess.  I am sure that I can hear the tinkling of fairies and see the ghosts of gnomes being nursemaids to the awakening.  As the season passes, trees pass through their teen years again, showing off, dancing!  I tend to get stressed, too fenzied, but also sense the promise that fabulousness is right around the corner..

Cuz summer, baby!  THAT is the BOMB!  Goodness, I am filled with so much zest and furve!  Every day is a celebration!  Love lives in every vision, every exchange!  Every look, every smell, every rounded stone and bristly branch, every bustling animal and every riotous plant brings tears to my eyes! THE GLORY!!! The intensity fills me so deeply.  My soul knows that it has lived here forever - when the mountains were young and as they've smoothed with time...

I have lived and loved here.
I have loved and lost here.
I am here now.
I will be here again.

Like my Twin Flame, this Place is eternal for me.  Here is my beloved friend, the lover that touched my soul, my comforting embrace, the teacher that pushes me beyond my self-set limits, the dog that walks beside me through hell, the rock that protects me from dangerous elements.  I know that Here I have gone too far, and not gone far enough.  Here is where passion, life lived fully, overtakes me...

I have been thrown for a couple loops this week.  My time is needed by others.  I truly do not know when I will go home again - ailing family needs me...

But I know, that I am Home.  What ever challenges this life brings, I will transcend them.  We each get to choose which moments will haunt us eternally - and I choose to be haunted by LOVE!  

There has been, or will be another time when I was, or will be complete with you... here

Monday, November 18, 2013

This is Autism...

As every member of our community says, "If you've met ONE person with Autism, you've met ONE person with Autism."  Autism is a SPECTRUM "disorder" because it is effects every person so very differently. I tend to think is Autism (and life) as a pointillism painting, or like Connectiles (made by Project Adventure or Wilderdom Store)... each point is complete, whole in and of itself, but becomes glorified and meaningful when it is placed within context.  I can inherently ONLY speak to how Autism lives with us, in our family...

The story of how we got a diagnosis convoluted and painful, like MANY families.  If you're interested in all the gory details check out our Facebook Page JT's Journey and read the Notes.  Someday I am sure I'll compile them onto a book - but this is not that day.  To summarize:  We bought into the fear and doom.  We were afraid we would scar him for life with a <<LABEL>> (hear that in an echo-y voice from a horror movie), and we were afraid that he'd be a victim of society if we didn't (no supports at school, no supports when he turned 18, him stuck a dependent his whole life).  We sought a medical diagnosis, feeling that it was more "legitimate" that an educational one (which we found to be True), and found it useless in the educational system.  We found a convoluted and antagonistic relationship between the medical establishment and the educational establishment, and felt shafted.  We tried to be cooperative, informed, and involved.  We were warriors and beseechers, to no avail. We rushed into intervention preschool, and stayed in school to start 1st grade, but it was not a situation that was healthy or sustainable for us. A part of that is our Autism, but a part of that is just our general community.  (As time passes we meet more and more members of our community who find the schools unable to create an environment where their "normal" kids thrive either.  We eventually opted to homeschool.)

The medical tale is a reflection of our stress with the educational one.  Our original diagnosis was "Asperger's" or "High-functioning", but it was also called "Severe Asperger's" by more than one therapist we saw.  Our Autism includes language, so we are considered "lucky", and most adults find my kid to be pretty entertaining.  He uses LOTS of language, with advanced vocabulary and creative character developments.  There's not too much plot action, but man can he regale you with detail!  We noticed from an early age that understanding all that language took a LOT of detective work from us.  Much of it was recited (echolalia is the clinical term) from TV, or radio, or books, or conversations.  We needed knowledge of the original context in which he heard it to try to divine meaning.  Over time it became "scripting", and that evolved into more sustained/ original conversations.  But do NOT get the idea that having a conversation with this child is "normal".  Much of his info is still recited from National Geographic - more of a dissertation in nature, not a give and take conversation.  As he has grew into playing with his sibling, he often told her exactly what she was supposed to respond.  He often becomes overwhelmed with distress about a particular idea and it still takes lots of detective work to find the association that is causing him the distress.  Over time the pediatrician has changed the label from scripting to stuttering.  He starts sentences over all the time.  He talks to him self almost incessantly, a running narration of his actions and mind wanderings (very useful when he was younger - he would inadvertently announce every time he was about to open something he wasn't supposed to.  As he's aged the leaps are harder to follow.)  And he LOVES accents - has gone through periods where he spoke with an Aussie accent (Thanks to Ice Age Dawn of the Dinosaurs), a Scottish accent (Thanks to Open Season), and kind of Transylvanian accent (Thanks to Phineas & Ferb).  He tries on LOTS of different pronunciations...  It has been particularly useful in helping him cope with his sister's Auditory Processing issues and slight language "delay" (she was missing some letters for a while).

We have had 4+ years of occupational therapy (OT).  He kinda learned to bounce & catch a ball.  He sorta learned to skip.  He eventually learned to tie shoes.  He still has not conquered riding a bike or unbuttoning his pants.  We have finally decided to take a long break from therapy so that he stops internalizing that he is "broken".  My boy is charming, but definitely awkward.  Dyspraxia is the clinical name.  He has a "motor-skill delay" - he just looks like a puppy all the time - like he's got too many legs, or like he is trying to operate his body from a remote location.  Sensory Processing Disorder is another "problem" OT was trying to "fix".  Hand dryers in public bathrooms were an object of abject fear for us for a loooooong time.  Eating is STILL a Contact Sport for us on many days.  We see LOTS of flapping and pacing, and LOADS of full contact cuddling.  One therapist called him a "melter"... just pushing against something or someone ALL the time to try to find his body in space. If my kid were a Labrador or a Rottie we would call him a "lover".  The Sensory Integration therapy (OT) has provided us a language and strategies to help him meet his sensory needs.  Our goal from the outset was to provide him with "socially acceptable" (or more socially acceptable) ways to meet these innate needs.  The truth is that about every 6 to 8 weeks we see some new behavior manifest. Now we can see the patterns of how they relate to the seasons and growth spurts.  When he was little those behaviors were sometimes frightening because we didn't know how to help.  But our anxiety only added to his.  A rash would become weeping lesions.  Restarting sentences led to head banging.  Pacing led to slamming into walls.  And being a victim of bullying led to verbal aggression.  He developed a rare untreatable autoimmune disorder. Eventually, threats of suicide from a 6 year old showed that we were NOT supporting him in the ways he needed! 

We learned to opt out of the emergency mentality.  We took time to just slow down, really OBSERVE him.  We started back where we were when he was an infant - a really cool kid who did really cool stuff.  He surprised us.  He laughed, he played, and he was trying SO HARD to connect with us!!  When we came back to a place where he was just... himself... everything got OK.  In fact, it got awesome!  It was clear that he was working hard to meet our expectations of him as best he could.  It was clear that we could develop our own vocabulary for what he experienced, and it was clear that we needed to focus on strengths, not deficits.  Look, I am not perfect person either.  I have my own meltdowns and sensory overloads.  There are days and times I just don't cope (deflect to an obsession topic - like knitting). 

My Autistic son is HUMAN... JUST LIKE ME.  His experience is distinctly his own, but it is not broken or cursed!  There are no pieces missing... just ones he sees that we don't... yet.  Thank GOD he is not perfect, because then he'd be an angel and God would have to take him back!  I want to learn with and from the gift of this child's life.  It does not matter what label you, or the school system, or Autism Speaks puts on his differences;  he would have them anyway, and they would be exactly what he needs to learn in life.  HE IS A FULL HUMAN, living, everyday, the full spectrum of the human experience - he is learning to be the best him he can possibly be!  THAT is what Autism is...