On Christmas Movie Marathon Insights...

How to Train Your Dragon, Kung Fu Panda... yeah, we've been watching FX today

And it has led to some important insights....

"We need more of... this"
"You just gestured to all of me..."

Insight: People are a whole package.  Yes, we all have attributes, lists of those things that compose us, but we are a complete organism - a whole package.

People, humanity, seems to have a need to take things apart in order to put them back together.  We tend to label the components, looking for the exact spot in a system, the exact location of a glitch that we need to tweak or fix.  Industrialization seems to have moved us to a place where our most basic thought processes incline to interchangeable parts theory.  

DaVinci recorded a minutia of biological information in his studies of the human body.  The Portuguese led the way in conquering the seas through the myriad components of navigation.  The defeat of the Spanish Armada (ships sunk with ammunition on board because it didn't fit the cannons on board) led to an interchangeable parts mentality in the military, eventually championed by Eli Whitney and used in machinery production, from the cotton gin to the tractor.  The very basis of our economic machine is interchangeable parts - each new model of car has only one or two things different from the past one because its design is based on the components, the hardware that has already been produced - the molds and dies that have been cutting out fenders and pumping out headlights that have been stocked and stored in warehouses, waiting to be assembled... (think Johnny Cash, "One Piece At A Time")

But the sum is greater than the parts!  Identifying the parts does NOT define how they work together.  Interestingly, the most contemporary medical research is showing just how little we "get" that...  one of the most compelling "theories" that is shaping the way doctors practice is based on Microbiology - the idea that there are zillions of bacteria all over and in our bodies (that we are in fact only 10% human according to an article in the Smithsonian, July-August 2010).  I'm not sure if I read it somewhere or if it's just a "gut" feeling (pun unintentional but well placed) but it is just this kind of complex whole, sum-greater-than-parts, macro understanding that would explain why Autism is related to intestinal function (called the gut-brain connection that is talked about with the Gluten-Free-Casein-Free diet, and the autism-vaccine discussion).  
What if we are looking in the wrong directions, trying too hard to find pieces?

"The point is, stop trying to be what you are not." 

Insight:  What if we stop trying to be what we are NOT?  what if we start looking at WHOLES instead of parts?  What if instead of making lists of all the thorns and roses, we just accepted that they go together - that they are part of the same plant?  What if instead of weeding out my wickedness and trying to make sure people only have to work with my strengths I could learn to accept that they are flip sides of the same coin?  To me this is heavily related to the recent Pantene commercial about double standards - and the conversations about how Autism shows up in women.  When does assertive become bossy?  When does controlling the environment (sensory overload) become manipulation?  When does neat-freak become OCD?  When does the lack of flexibility & literal thinking translate into being a territorial b!t@#?  

"There is no secret ingredient!"

Insight:  Things are special because of their innate being.  The soup is good because it is the perfect balance of ingredients and methods.  It is good just because... it is good.  It has been through some refinement, some trial and error, and with practice each batch is consistently good.  There are no pieces missing of me either, or of you!  I am good just because... I am good.  I have been through some learning curves, but the more I am true to my ingredients and methods, the more consistently I am good.  Again, it is the sum of all the parts that makes the perfect soup, and me.  Finding balance and harmony in all those ingredients & methods makes the best me...  and there is no secret ingredient or magic cure or essential act or missing piece needed!!  I have all the elements I need already.


I have to say that I really appreciate the messages in these movies.  The hero saves himself - no damsels in distress or trying to counter the fates.  They are messages of fulfilling destinies - of encountering fates, learning to embrace the True Self.  And those Selves are NOT perfect.  Hiccup could easily be classified Aspergers (right down to the physical awkwardness), and definitely an outcast.  Po is considered the exactly-wrong-guy-for-the-job, adopted and doubted.  It is only when they embrace and exploit their differences that they can solve problems - and not just for themselves - but for those lives around them they touch...

I know every generation searches for its identity, tries to find those attributes that give it "a place in History"...

Is there a Big Picture connection here?  "Kid's movies" about self-knowledge and being True to Self... a rising number of children being labeled as so "different" they are Autistic... some of those children so different that they can't use words... some healers claiming that they can communicate empathically/ telepathically... some parents & psychics even claiming that we are witnessing the evolution of man...

That sounds pretty far fetched, pretty "out there"!

While the rest of the world was trying to make better candles, an Aspie invented the light bulb... a man who was partially deaf, didn't speak until older, dismissed by schools as a child for his inability to learn... the man who said, "I have not failed, I've just found 10000 ways that do not work"...  someone who devoted untold hours to a crazy pursuit, a vision only he could see... 

the Bigger Autism Picture

I'm gonna cover a LOT of ground here, so stick with me people...

Autism Speaks has lost its credibility with the Autistic Community.  Those adults on the Spectrum who have found their voices are adamant that Autism Speaks does NOT speak for them.  The heart of the argument is around a single ad - a message from the director of Autism Speaks that focuses on how bad it is to live with Autism.  

This outlook, of Autism as "bad", is the core of the "seeking a cure" mission of Autism Speaks - a mission that all Autistic adults active in public discourse find repulsive, insulting and threatening.  (Note that this cannot inherently include those "low-functioning" adults who are not active in public discourse.)  The argument from Autistic adults is that Autism is NOT separable from their identity.

Here are my insights:

EVERYONE, on all and any sides of any discussion about Autism advocate that the MOST IMPORTANT thing an autistic person needs is EARLY INTERVENTION.

Certainly, the medical community identifies Autism as a tragic condition, and it is a fight to get a diagnosis because doctors are so loathe to weight a child with the finality and terminality it carries in the medical field.  By medical criteria, we are dealing with an incurable condition.  Historically that diagnosis has meant institutionalization because the "victim" is a total dependent.  

So once you finally get the diagnosis, there is HUGE amounts of pressure to make up for all the time you've already lost getting that diagnosis so that you can intervene as early as possible.

Now the debate becomes not IF the patient is sick, but WHICH therapies will be effective with the patient.  A long process of trial and error begins.  Everybody chimes in with their expertise.  The Neuro will advocate from their perspective, the OT will advocate from their perspective, the Speech Pathologist will advocate from their perspective, the Psychologist will advocate from their perspective, the Teachers will speak from their experience, the Old Ladies will suggest from their... accumulated wisdom.  If you are very lucky, someone will finally send you the the Developmental Pediatrician who will try to tie all of these perspectives together.  And not all these people will agree with each other.  You will receive LOTS of conflicting information.

And the parent is trapped in a vortex of insanity.

Ultimately, it is the parent who will be the trigger on all this.  All these experts will make their suggestions based on the accumulated observations of the parents.  And the effectiveness of any strategies is entirely contingent upon the parents' willingness and ability to follow thru with the act.  The effectiveness of a therapy will be determined by the parents' observations. Solicited and unsolicited advice will bombard.  Comparisons will be sought in an effort to define through the confusion.  And there will be LOTS of people who provide you all kinds of resources to help you.  The medical establishment knows it has set up this vortex of confusion, so it will tell you to find a parent group.  The educational establishment will try to make you "part of the team" in the IEP process, to greater or lesser success depending on your locality.

Everybody KNOWS you are overwhelmed, so the next thing you'll be pressured to do is "get services", apply for "the waiver".  You'll be connected to an advocate group that will "walk you through" that process.  The idea here is that your kiddo is DISabled, so they ARE entitled to what ever they need to be successful.  Everything from in home therapy, to the hardware of the therapists, to respite caregivers in your home.  Everyone will tell you, you NEED this!!  And they are here to help you get it.  

The very FIRST thing that any advocate group will tell you is to be prepared to fight.  As you start looking at others' stories, trying to come to grips with which of the various outcomes and realities might possibly apply to your situation, you will see LOTS of verbiage about warriors and difficulties and legal rights.  The first thing you find out is that you are gonna be fighting up hill "the rest of your life".  The doctors want to "fix", so you will search and search for the "fix" that works.  The teachers want to "improve", so you keep trying to meet that measurement.

And the very SECOND thing that advocate will tell you: only list the deficits.  You are trying to convince the government that your child is DISabled, UNabled.  Sure, you may have seen growth in your child in the past 3 months, but be sure you tell the social worker about how far behind your kid is on "milestones".  As fellow parents, we celebrate that your kid only ate grass 3 times this week instead of seven, or that the obsession topic is slowly broadening, but you need to make sure that the social worker knows that 95% of the words that come out of your child's mouth are lines from movies - don't mention that they were relevant to the discussion they were used in. 

And then comes the big quiet admission.  Filing for "the waiver" or "disability" really is an admission that your child needs institutionalization, and you are asking to meet that need in the home.  Some advocates will be vehement that they are NOT allowed to ask you that, but most parents will admit that they were asked exactly that, and those that said no were denied...

The other route to those services is through the educational system.  Ideally (and in some places) those 2 systems work together, with the school using the resources of social security to pay for the aides and equipment your child uses in the school and at home.  But they are NOT the same systems.  Docs who who work in the school system are no longer practicing docs, they are references for the school - they can label, but they cannot diagnose.  But the school will tell you they their experts are better - "they know children better" - because they have to be sure their expert is an expert.  

The school is required to keep you informed, to let you be "a part of the team" through the IEP process, but it is a process, by committee, and it means that your voice is inherently outnumbered by the educational experts on the committee, and decision making is slow.  So they will press you to rush to action since committees are inherently slow.  If you are incredibly lucky, your IEP team will work together well, and your wishes will match theirs, and things will be awesome - you won't need that medical stuff anyway (until they are 18 years old).  

But luck does not run high in this pursuit.  The vast majority of parents find that at some point they are bullied into signing the IEP so that the desperate teachers can do *something*, *anything* to help your child, because what is going on is unmanageable, and they can't make changes without a committee meeting.  The experts on the IEP team are threatened by each other (politics playing out in their system), so an informed parent is a threat too.  They cannot afford to lose face in front of each other by letting you "run" the meeting.  Worse you may have been so thorough in your research that you threaten their "expertise", and now they fight to retain a shred of their professionalism.  If you are REALLY unlucky, you'll be dealing with a systemic culture where this need to prove expertise underlies every meeting and the IEP players will come into the process on the defensive - and make you feel like your small limited knowledge of just one case is inconsequential.

SO you do "whatever it takes!"  - because you are the parent, the grown-up, the warrior, the protector.  Those early interventions are the BEST CHANCE you have of giving your child the slimmest possibility that they will be able to function just well enough to avoid that institutionalized "group home" in 18 - 16 years...

Under these circumstances, you can see why it is difficult to "celebrate" the successes, to see the "gifts" of Autism.  It is clear that Autism IS in fact a burden - and it gets carried around everywhere, because there are therapists, and respite caregivers, and caring teachers, and designated aides, and judging neighbors EVERYWHERE.  It is desperately obvious in your child's gait, flapping hands, vocal stimming, sensory sensitive clothes, fidget toys... this kid is ... "special".

So you buy into your own hype.  You tell the social worker the worst.  You celebrate with the therapists, but not too much or their job will be "done".  You cry when the rude people in line at the store make comments.  You research like mad, and then gird yourself for IEP meetings.  You read as many blogs as possible to try to work with the school staff more effectively.  You observe very closely, trying to figure out EXACTLY what environmental sensory experience triggered the overload.  You manage the daily environment and routine to create "functionality" for your child.  That's your JOB. 

You dwell in that place of bleak hope, and wear yourself out meeting all those expectations.

You work so VERY VERY hard to connect with your child, to come into their world, to "figure it out"...

And then you find that community of Autistic adults who are saying that all these therapies are a punishment.  You find a group of parent bloggers who are saying that Autism is a window into the future, a new humanity.  You finally look at the remnants of your couch one day and think, "REALLY?!?!?!?!?!?  THIS is the BEST it can be?!"

And then you look at your kid, pacing the floor thru the 780th consecutive daily showing of the same episode of Thomas, and you see with your heart.  You realize that you have a choice.

Either I can look at where we are and look backwards, or I can look at where we are and look forwards...

And THEN you realize that the secret is... you have to start by looking at where you are...

Once you start listening to your heart instead of your fears, you know that you CAN connect with your kid - you HAVE BEEN connecting with them.  You have had instincts driving you this whole time to do exactly what needed to be done - and you were overridden by the "experts" and your guilt.

The first time you realize that Disney movie lines out of context really DO effectively communicate what he'd like for dinner, or that the arrangement of the shoes actually looks like continents, or that she brought you her favorite security object because you were sick... THEN you start to TRUST those instincts.

And it builds over time.  You allow yourself to watch more closely, to fall into their rhythms... you start to actually meet in the middle, not just wait for your child to come on over...

Then you can actually start to understand the adult Autistics, and the blogging parents who blow sunshine up everybody's butts.  You DO have a choice about whether is a DISability or a DIFFERENTability.  You start to see how a "cure" would deprive your kid of the creativity they found in mashing up Dora with National Geographic.  You start to see the secret genius of obsession with minutia.  You start deciding that there are roses, not just thorns...

And it DOES become a larger spiritual question.  Am I going to seek the Good over the Bad?  Am I going to value the intention over the delivery?  Am I going to listen or demand? 

Will I have faith that everything happens for a reason?  Or will I accept success only on MY terms?

Once you see the awesomeness that had been hiding behind the tragedy, once you focus on the loving child inside all that struggle, change starts to happen.  Maybe your perspective changes, so you can accept different as equal.  Maybe the kid actually develops better because they know they are loved.  Probably both happen.  The sum becomes greater than the parts, and fabulousness happens...

It isn't a "miracle cure".  The world is not "suddenly changed", except that it is...  Everything is not "just put back to rights", except that it is...  The hardships continue, except that they get easier...

And now comes the part where I have to "prove" to you that my kid is autistic "enough" for my insights to be valid... where you who are walking through the depths of these Early Interventions can find that shred of similarity that lets you believe that my experience can be reflective of yours...  where those Autistic adults can measure whether or not my kid "qualifies" to be a part of their community... where I can commiserate with others who have been to the ER for poison mushrooms, or spent un-spare pennies on sensory tools, or have learned what it is to be insulted in "dinosaur"... where we can all admit how tired we are, of ALL of it...

But I am not going to, because THIS day I am making a choice. I am walking through a door.  My child's story is HIS own.  He will tell it in his best fashion.  I am his mother, his teacher, his coach, his friend... I will play my part in his story...

But I have my OWN story - the one I am living.  It includes my kids, my family, and the Work God Has Created Me For...

You will read this and know it is True for you too, or you will read this and know you are not here... and the words will find you again when you get here.

Rest assured, that Autism is a gift, a unique path, a piece of the Master Puzzle - and it WILL all fit together correctly, eventually.

...and you need to get really good at eaves dropping and observing, buddy...

to my Love...

I am lonely & hormonal... and the only thing I have to reach out with is my words.  You are too far away for me to reach with my hands...

I know that I am where I am needed right now - that I am here to both offer needed support and to learn.  I have had intense amounts of affirmation in the past 3 days in my ability to "read"/ "hear" other people and Divine Nudges...

I knew her medicines were not right, and that she didn't want to take them, and the hospice nurse pointed it out within 6 hours.  I knew she wanted me to bake bread, and once I did it triggered memories of her mother.  I know that she wants us to laugh and remember the good times, and I think I provided a tool for that...

Herons have crossed my path everyday this week.  He teaches self-reliance - being confident in my perceptions so I can grasp opportunities quickly.  He is telling me I am not wrong...

You actually said those words to me once... "You are not wrong."

I am tired.  I am lonely.  I am ready to give up on disappointment.

I am not ready to give up on responsibility.

My kids have had to share me a lot this year.  It will go down as the year they learned to live without me...  I feel like they MUST share me - for I must do and be what God has asked me to be - not only their mother, but a teacher, a dreamer, a connector.  There is work I must do - just like there is work You must do.  Time is not our friend right now...

I am tired.  I am lonely.  And we are so very far apart.

I just want to hear you say "I love you", very close to my ear, with the strength of your arms to hold me up a little while - just to let me rest a little.  You've done that for me before... thank you.  I want to do that again.

I am tired.  I am lonely.  And I have nothing to touch you with, to reach out to you with, except words...

I'll dream of your arms again tonight.  And I will keep placing trust in Time.  We will come together again...

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. 

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...

My place in time...

This is for me, about the things I know, but it is also for my friends...

I have reached the conclusion that time is a human construct, not a divine construct.  For God, for infinite Divine Power, time is fluid.  I think it is our ability to hold on to time that makes us "God-like", "in His image"... we can conjure up memories and get lost in them with just the strength of our will.  We can choose to live in the past or the future, not just the present... we are able to be fluid through time.

So much of my study/ personal growth lately has focused on living "in the moment", in the "right now!"... finding ways to connect to what exists before me, with me, in me.  And I am getting better at it.  I am really able to acknowledge love and beauty in better ways than I have ever been able to in my life. I want to keep working in that direction.

At the same time, I have often felt like I can see "ribbons" of time attached to people, places and events.  It is as if there is a tapestry being woven and the threads (ribbons) weave a complex and beautiful whole that is both eternal and momentary.  There are people who I meet, know and can "see" them through time.  It is as if I have known them when they were young, in their prime, and when they are wise in experience.  There are other people who I do not "see through time" but they keep showing up "on my timeline", their ribbon, though I cannot follow it, continues to interweave with mine.  I am deeply appreciative of both, desperately curious to see how they come together, and honestly in love with all of them.

The past couple days I have been really reflective of where I specifically am in time.  I know I am approaching a transition, though I am unclear on the particulars, so I am assessing my position.  

Several of my friends also seem to be assessing.  One friend younger than I am posted a question on the importance of his college degree this week - and lots of his age peers supported his concern.  One friend younger than I had a long heartfelt conversation about personal direction and leaving home.  Many of my staff are starting or finishing college, and there is lots of tension about direction and making good decisions. There is also lots of pressure to be sure there are no "lost opportunities".  I remember that pressure.  As I looked to my experience to help inform theirs, I realized that mine was shaped with an unexpected and unusual physical disability (surgery on both knees).  The lesson was to hold on to what I needed and work through the challenges.  I could not have predicted how that played out, but I was driven to achieve the pieces I needed... the associations and events that still link to where I am today (scouts, foreign travel, my university, needle arts, family, the mountains...)

As I have looked to the friends and family I have re-encountered, I know that I could not have predicted where they are either.  In the last year, several have divorced, but i discovered others have never married (though I would have expected them to).  Girls (now women) I was in scouting with for years, who I knew in deeply emotionally intimate ways, who I grew up with, are not in places/ situations that I could have possibly predicted!  While a base essence of them is constant, still there, the specific manifestation of that is unexpected.  The deeply religious girly girl became a member of the National Guard, and is now a foster parent.  The life of the party (she led every late night sing-along) is a special education teacher with 2 beautiful children.  A boy (now man) I went to elementary school with is a well traveled missionary, who has rebuilt the organ in the Crystal Catherdral.  From my circle of "high school posse" we are all over the nation, living with parents, struggling with special needs children, finding new ways to connect with our spirituality, advocating in our communities, and just trying to get by...  Of my cousins - we are all over the country, still getting our educations, touching lives in academic and military endeavors, dealing with cancer and tragic accidents, trying to equip our kids with the best tools we can, and just trying to get by...

As I look at me, I am overwhelmed with realities that I never expected.  I grew up driving L.A. freeways, I never expected to spend my life exploring scenic by ways.  I loved camping and scouting, but overlooked its power because it was so constant in my life.  Only after the dysfunction of my body "took" those activities away from me did I understand - and I make a living doing them despite the limitations of my body.  I expected to be a mom, but never ever a teacher.  And I certainly could not have possibly imagined being an autism parent, and the amazing journey it has led me on.  I knew I would seek knowledge all my days, but never imagined that I would learn to honor experience over "book learning"/ academic rigor.  If someone had told me 20 years ago that I would be living in these blessed mountains, homeschooling, or working at a camp, I would NEVER have believed them.  I would never have believed someone if they had told me I would miss authentic Mexican food.  It would been beyond my realm of reality.  I ask you to take a good look at you, but do not believe for one second that it in any way represents all that you will be!

More importantly, I would not have believed that I could be in such a rich emotional place - that I would have a job where my co workers are my friends, that I could be so in love with my coworkers that they are my family.  I would never have believed that I could be surrounded by people who accept me, people who are not just tolerating me, but loving me, growing me... I COULD NEVER HAVE BELIEVED THAT I WOULD BE EXACTLY WHERE I NEED TO BE!  Because, "back then", I was so emotionally invested in the struggle, in the transition, that I couldn't imagine the destination.  I was too busy looking for answers that I didn't see people. 

And this is what I want to say to all my friends, to everyone who is transitioning RIGHT NOW: It's OK.  You will not be able to imagine the destination.  You will not be able to see where this is heading.  Unexpected diversions will come up, and they are not "missed opportunities"!  They are the windows and doors that will lead you to exactly where you are supposed to be, exactly where you need to be.  DO NOT BE AFRAID!  There will be angels and friends and loving people there, both along the path and at the destination.  You are right - you will be sad sometimes, and frustrated sometimes, confused many times, and doors will close.  But your confusion will pass, even if you choose to stand in front of that closed door, some one or some thing will come along and drag you through a different one (the secret is to listen to invitations so they don't have to drag you).  The essence of you, the Gift that God made you to be, the Good that you are created to do will fight its way out, some paths will become clear, patience will be rewarded... and all those other idioms of happiness really do happen!  

If you are not sure where to go next: LOVE PEOPLE, it is the most important thing you can do!  In acts of love paths become crystal clear - you will know exactly what you have to hold on to and let go of.

I will say that the confusion does not ever TOTALLY disappear.  My mother told me when I was 18 that I would never feel older than I did right then.  Her exact words were that I would gain knowledge, information, but I would never feel more prepared to make decisions than I did right then.  A good friend repeated that sentiment to me this week - saying he felt like he was still making the decisions of a 17 year old even though he was in his 20's.  I have to say, I remember feeling that way right through my 20's... but I also have to say that some things did become clear, some decisions were easy, with no clouds of doubt.  There were times I looked at a person, a place, an event and knew immediately what I needed to do.  Many of them were not even conscious decisions - I just acted... because my heart knew it needed to, my soul just led me, I just "went there".  Follow THAT.

And while I feel like (and hope) that I have gained wisdom, there are still choices that I struggle with, decisions I am afraid to make because I fear the long term ramifications, still pieces of me that I feel like I should know better.  I still get frustrated with waiting for things to play out, and doors to open, I still find regrets on how I could have touched a life better, or beat myself up for not doing a better job.  I try now to look for a lesson, not just be sad...

And as I wrote this, it became clear my soul is "going there" again.  These words are for me too - to remind me to let the destination go, because I can't see the destination anyhow.  I have been living in a fearful transition for 2 months now, but I also have some things I know I need to do, some places I know I need to go.   I have people I KNOW I LOVE, and it is time to look at what is clear instead of trying to peer through the obscure mists. 

The doors that open are the ones you are supposed to walk through.  You exist exactly where you need to, when you need to.  Love, Good, angels, surround you right now!  Go kiss 'em!  Live Love as an active verb!

feeling in a funk

These are the kinds of times I do NOT want to write out, to remember - but I think it is important that I be able to look at this place a year from now and see the change...

I am feeling like I am in a transition.  I am in a pretty deep funk, keep looking into who I am and what I am doing - keep trying to lay fingers on a good reason to feel as "off" as I do... and there aren't any, really.  There are lots and lots of little things, things I should be OK with, thinngs I have overcome before, but I just seem stuck on them now.

There is the potential for transition coming, though I know it will be incremental - not a big deal in the short term.  I am internalizing all kinds of pressure about it (have been for 3 months) - but it has to do with a much larger political situation at work, with many many fingers in the pie, and lots of hoops, and details beyond the scope of my ability to control.  I know that all the players are good people, that everyone has everyone else's best interests at heart, and that we are all committed to the growth of our organization.  Truthfully, there is nothing to do but wait while everything gets sorted out.  Realistically, no one will get exactly what they are wishing for out of this - not only will we all have to compromise, but there simply are not enough resources available to do it all.  The people who are making decisions are deeply knowledgeable and insightful.  It really will all be better than OK.  Perhaps I am being impatient...

So the problem must be me?  Several coworkers & friends have identified "chips on my shoulders", resentment, and my flaws lately.  Am I just not working on me hard enough right now?  Is it the shortening days - depression setting in, lowering my frustration threshold?  Should I be working harder on self-improvement?  I feel like I have invested a LOT of effort in me this year.  I am losing weight, I am exploring my goals, I am making time for myself to play, I have actively worked to build my confidence and lose a victim mentality.  I am really trying to not just stand in a place where I can look at my history and know it shaped me, but look ahead and aim for where it will take me - to not just "let" life happen, but to "make" life happen.  And I have tried to do so as healthily as possible - by focusing my passionate nature on every minute I am in, living fully.  I feel like I had been doing a pretty good job all summer, but in the past month doubt resurfaces more often.

I keep returning to a place where I am an embarrassment to others.  And there are a few small events that have brought that out this month, but no appalling moments of social ineptitude like my past has seen.  I have not hurt anyone's feelings or broken an unspoken rule - yet every day I am haunted that there is some thing I have done that I do not even know about that is bringing people to judge me in an unfavorable way.  I have not been this undermined with doubt for a while...

My friends have continued to reach out to me, to help me feel loved.  They have bragged on me to others, asked me to train and lead.  My husband has been kind and loving.  My children have written me letters while they are away.  I am connecting with students meaningfully on the challenge course.  I am doing what I am supposed to, seeking loving presences, and fulfilling my responsibilities.  And I do truly see and appreciate how much love is sent my way, in a genuine way I know I did not feel when I was younger...

The only thing I feel I need to do better on in the moment is housekeeping - nesting.  I am doing lots of art nesting (which I normally do in the fall) - but my fear of spiders is just totally impeding me from cleaning - as well as the knowledge that in 1 week my children will return and it will all be for naught.  I have been living with myself as a bad housekeeper for years - why is is bothering me now?

I am thinking I just need to chalk it up to the winter depression - the lack of light.  All I really want to do is go back to sleep, sleep as long as possible, and wake up when it is time to play outside again...

I am trying desperately to hide from my own head.  I want to turn my thinking off for a while...

On suicide and regrets...

Post been going around: The Things We Do Not Say
[To provide context, the autism community is reeling with several suicide-murder attempts by parents of autistic children in the past weeks.  It has ignited much discussion over resources and how difficult autism really is, and responses from Autistic adults of how dehumanized these events and discussions make them feel.] 

My response:
Thank you.  You have found expression for what I have wanted to say.  To ignore the jealousy (of others's abilities) or the grief (over things you'll never have) is to ignore the very humanity of it [the experience of being disabled, of being human].  "Normal" people have struggled with these [emotions] for eons - as testified to in literature in all languages.  Is it any sin that those who find themselves "outside the circle" know it and wish differently?  I recognize that if my child was someone else [not disabled], we would just have different battles to face, other strengths and weaknesses and abilities to conquer and support.  I recognize that the richness of their life is determined by their challenges - but I'm not going to pretend that I don't like the challenges we got. To do so would minimize them, and minimize their struggle.  I will sorrow with them, and find strength with them, because THAT is what living is about...

I have really been arguing with myself about acceptance and therapy and compensation skills and guilt and what parts of me and my autistic kid and my willful kid and my husband are OK to live with, and what aren't.  Some Autistic adults are talking about how evil and hurtful therapy is.  How far are we supposed to bend to "socially acceptable", and how much are we just supposed to live with (accept)?

We (our family) have come up with the mantra: You can be mad, but you can't be mean.

As I have said before, part of the autism journey (for us) is seeing that we ARE like that too, remembering our own experiences of isolation and weirdness and sensory odd and uncontrollable outbursts...  It is only now, as we watch our children struggle that my husband and I are seeing roads to control these things in ourselves - alternate routes, if you will - driven by our need to equip our children to be "better".

I struggle with my self.  What am I worth? How odd am I? Where is "crazy"?  Where is "still ok"? What IS it that makes me strong?  What kind of strength am I supposed to have?  When do I give up? Why can't I seem to see what others see?  Why do things seem so hard for me that are simple to others?  How come I just don't "see" the same "sense" that others do?  Why do I do things that frustrate me and others?  How much of an abrasive personality is forgivable?  When am I supposed to stand up for myself?  When am I supposed to bow to the needs of others?  Who does value me?  What do they value me for?  Why do I care?  When will I see my own worth?  How do I find that value?  Are my thorns bigger than my roses?  Is my rose awesome enough to outshine all these thorns?  Why can't I be like the other people I see? 

I wish I was as self confident as...  
I wish I had the motivation of...  
I wish I could put the pieces together like... 
I wish I could just stop...
I wish I could just start... 
I wish I had the resources of...
I wish that wasn't scary to me...
I wish my body would do that...
I wish someone loved me like that...
I wish chocolate really was a vegetable...

I just wish things were different...

But, they aren't.  

I will have to live with whatever is dealt.  And I have to do it in a way that will uphold the principles I expect of myself and the responsibilities I have to others.  

In other words, I need to FIND a way to respect myself at the end of the day (or at least the end of the week).

Denying that I feel jealousy or confusion or grief will NOT help me find that respect.  Yes, I have to accept that I have flaws, and that those around me have flaws, and that my situation has flaws.  And I have decided (based on years of talking to people and reading lots of stuff) that every one, every life, every path, every being,  has $h!% happen.  All of my wishful thinking will not escape these feelings, just change the context, the details...

I have to find a way to genuinely assess (which is almost always done by comparison) that which I DO have, and then find a way to make it fit into what opens to me (finding successes through the regrets and wishes and if only). 

I have faced those demons, that place where I am convinced that I have no value, that my efforts are in vain, that effecting positive change around me is simply out of my ability, that I have outlived my usefulness... I have looked at the choice to commit suicide, more than once.  I have even made the effort more than once.  I am confident that I will consider how my death will improve the world around me again.  I am confident that I will be totally and completely overwhelmed with my failings, disappointed with my inability to meet my own expectations, again.  I will fight the demons again.

My autistic son, of just 8 years has already expressed this same sentiment.  It is terrifying to hear a 7 year old explain to you why suicide is an intelligent alternative.  He says to me what my own heart has said before.  We actually fought about it last week, again.  His behavior did not met what I needed of him... he was overwhelmed with disappointment in himself, and he reprimanded me for stopping him from attempting to drown himself.

I am sure he wishes he was someone else, something else, somehow better able to meet my expectations.  Will the world now say that it is my fault for having such "unreasonable" expectations of him?  Did I not "accept" him enough?  Or is it not my task, as a parent, to show him where the lines of acceptability are?  Don't I need to label and practice with him at home those skills he will need outside the home? - like resourcefulness, and hard work, and dedication?  

He may have to fight to own these skills in some arenas, even though his obsessive drive will make them a non issue in others... I know.

And it is only through open, genuine expression, and experience, of all the richness of human emotions that I will be able to face those demons with self-respect, to say to them that lows come with highs, and that comparison always has two sides, and that success in one place IS transferable to another (Aspie trait again!).

And I have to know that I am NOT ALONE.  Just as my son needs to KNOW he is not alone!  People, both like him and completely different from him have been experiencing these same feelings for EVER... and they will continue to do so.  I hope many keep saying What Should Not Be Said... so that we can find connections instead of deny them.

a weeked with my husband...

So the truth is that my husband and I do not really have "domestic" bliss... in fact we are both wretched house keepers. We actually come from long lines of hoarders (mine are even more honorable than his) and tasks tend to get left until someone looks at them and thinks "ACK! well I guess no one else is gonna do this"

Our relationship is built on shared experiences, not really shared space...

So when my 1st weekend OFF in 4 months arrived, we started discussing what to do with our day.  Naturally, there is LOTS to do around the house, and we just need to do it... but instead we decided to "adventurate" (this is the verb we have invented for our family "adventure therapy" excursions).

Let's just drive, sweetheart...
OK. I have not been to Western Maryland, like Cumberland. Let's go there.
OK, sounds good.  So should we take stuff? I mean the worst case scenario is that we drive so far we decide to stay...
No, the worst that can happen is that we die in a fiery car crash.
(!!! what? - this from the man who has berated me for YEARS for being overly negative)
Um, well, I wasn't gonna go that far, hon.  I was just thinking we should pack sleeping bags and clothes in case we decide to camp or something...
Oh, yeah, that's a good idea.

So we found a change of clothes, and our sleeping bags, even remembered dog food, and got in the truck to go...

First we got a car wash, then we stopped by the Chocolate Bar, but it wasn't open yet (10:30 am), so we went across the shopping center to the organic store and got chips made from hummus and pinto beans.  We went up to I-70, and headed West.  Then this sign said "take I-68 to Ohio and points west", so we took I-68.   I sang along to the radio at the top of my lungs.  My husband tried to find a map, eventually found one on his phone that said I-68 doesn't really go to Ohio.  We tried to decided if we had ever been on this road before, worked through some old memories, decided that we must have been here once, but we had no memory of it.  

And then we got hungry.  As approached Cumberland, MD, we saw a sign for "The Crabby Pig" - BBQ and crabs - we are IN!  So we got off the interstate - and proceeded to be totally lost.  It was apparently the wrong exit.  We found the hospital, and then we found "town", and we saw a walking mall type area, and we crossed lots of RR tracks, and finally my husband's GPS put us back on the freeway on a one way entrance, and then took us off at the next exit in this convoluted tangle of ramps. And the restaurant was at the end of the ramp - but parking was not.  For those of you who live in Autism households, you can imagine the level of anxiety and snappiness that is building in our vehicle...  My husband is on the edge of flipping out...  I found an empty gravel lot pretty quick and parked there (even though it was totally unmarked and under an overpass), and we went to eat.

Turns out the Q was AWESOME, and hubby enjoyed his fish.  Dog enjoyed our bones and shells. And every waitress in the place keeps stepping outside and staring at something beyond the building... Finally our waitress tells us there is a concert tonight on the waterfront.  Apparently the guy is good, has even worked with Martina McBride.  And the concert is free.  We decided that our joints would enjoy being out of the car, so we will see...

We walked a tad along the canal (C&O) walk, found the Western Maryland Railroad Station (a part of a national park there - that is also the start of the a biking/ hiking trail that goes from Cumberland to Harper's Ferry). There is TONS of cool stuff to do there, and we talked about bringing the kids back, or bringing the scout groups there.  We found some lollygag spots, and appreciated them.  After a bit, we finally negotiated to go to that walking mall we had seen.

With no directions except the signs on the road to guide us (and the zillion flyers he picked up at the national park), we walked downtown Cumberland.  Turns out the town is very interesting.  We found the walking area, and the buildings are incredible.  Clearly old RR money, lots of desperately intricate 19th century efforts of Conspicuous Consumption mixed with some early 20th century attempts at modernity.  They are trying to revive and use these spaces for thriving art community.  All the little empty spaces between building and on corners are "parklets", with fountains and benches and greenery.  So cute!  We found one of the top ten yarn shops in the nation! It was COOL.  I need to go back and take classes (already plotting how I can do that).  Found a woodworker who makes wooden mushrooms with secret compartments - each one one-of-a-kind and named.  When you purchase one, you get to choose a name for the next one.  We got Iris for our daughter, and named Leilani for someone else's treasure.  We finally decided to stay in town and try that concert, so we walked to a hotel that the brochure said would take dogs, and got their last room.  I've never had a dog on the 6th floor before.

We moved the truck to the hotel, and then played on our computers a little (free WiFi!), and then decided to go get food.  We found a "grill" on that walking mall, and their drink special: hurricanes!!  So we had a few.  This is the first outing in which neither of us have needed to drive since college.  The dinner was delicious.  Hurricanes make my husband happy, and we laughed a lot, just got giggly.  I was even able to accept his admonishment that I was getting loud gracefully (because I have finally accepted that I AM loud, and that not everyone is OK with it).  We finally got to the concert.  The guy was good, and they had chairs out, enough for everyone.  And after the first set (that we saw) my husband fell asleep on me.  SO we went back to the hotel, where I tried to initiate a conversation while he watched football - but apparently I started snoring between sentences.

The next morning we had no headaches (yeah!) and found Roy Rogers.  I absolutely love the Chorizo Burrito - it was Perfect! and then we drove around the city for 30 minutes trying to find the on ramp.  We finally found the interstate, and went 2 exits.  The waitress had also suggested that we check out Rocky Gap State Park (and casino).  The park is absolutely fabulous, again we plotted coming back with the kids or a scout group.  We walked thru the casino and ate on their veranda.

I was seriously considering renting a canoe or a paddle board.  My husband looked at me and said, "You are so beautiful here, around the water.  It is truly your element."  

After some soup, we decided to explore the rest of the lake.  We drove every road we could find, followed signs to lookouts and pavilions and amphitheaters.  We finally found the camp ground, and it has an aviary!  we left no nook undiscovered!  We looked inside the yurt and the cabins, drove by every campsite (all 200), checked out the beach, found a fresh water oyster shell, saw skunk and bird tracks, watched minnows, saw a water bird hunting the shoreline, watched the dog drink from the clear lake, heard the wedding across the lake, checked out the nature center (got lots of good ideas!), met other dogs...

And then we decided to turn the other way in the road out, not towards the interstate.  Within 2 minutes we were in PA.  Hmmm... so we kept driving, knowing that eventually we'd hit something... but it seemed it might be a long time... and then a man on a bicycle was approaching, so we slowed down and ... spoke to a stranger (I'm sure you are aghast... I talk to strangers all the time, but Lord forbid my Aspie husband ask for directions!)  After all, the guy was in Sunday Khakis and a button down shirt (oohhhhh, dangerous)... 

Sir, we are lost.  Could you tell us where this road goes?
Well it eventually hits E______.  Where are you headed?
We live in Virginia, but we are up for some adventure...
Well, down in the middle of the cove you will see a white church.  If you turn right there it will take you Flintstone and the interstate.
Thank you so much, have a great day!

My husband then checked his GPS to be sure the complete stranger did not mislead us... we joked about roving bands of mountain men, and his ridiculous lack of faith in good country people... and we found the interstate.  And even adventured on the Historic National Road, until it merged with the interstate.

We stopped at Sideling Hill to see a geological wonder (old rocks when they dynomighted out the interstate)  It looks like the hill is glowering on the freeway.

We then went to West Virginia and checked out Capapon State Park.

We drove every inch of road in that park (well, except for the section to the golf club house), and checked out the cabins and shelters, and playgrounds, and... well, everything.  It was started by the CCC (Civilian Conservation Corps) in he late 30's, but WWII started before it was finished.  So we found a road that went to the summit of the park - 4 states are visible on clear days.  It a rather rough gravel road, so kinda slow going.  So slow that a squirrel tried to stop us.  He just sat in the middle of the road, staring us down... the truck passed right over him and he darted out between the tires!   Goob!

We then came home and washed some dishes, started some laundry, and did made a token effort towards domestic bliss...

We really are excellent procrastinators!

On Free Will and Predestination

I have been deeply struggling lately with these two ideas.  I have worked to create a "new me" this summer - to really see myself in a new light and to move in new directions... to invest in the person that I was "made to be"...

I struggled with how selfish that sounded, and how it affected my family and co workers, but then I saw that when I gained confidence, I was able to engender even more confidence (and genuine affection) in those around me.  And I started REALLY looking at why I do what I do...

I discovered that happiness IS a choice - that I can try to convince myself there are silver linings, or I can start actively listing them.  I can seek the company of those who make me stronger.  I can trust what my gut says.  I can find ways to respect and love people, or I can choose to hold onto anger...  It really IS my attitude (and the availability of chocolate) that determines whether or not I spend my day feeling good or not.  I can choose to believe that the compliments are genuine, or I can choose to believe they are just niceties.  This summer I learned to finally believe them... I can choose to forgive myself, or I can hold onto the pride that drives me into self-dis-respecting behaviors.

I also discovered that every person I interacted with helped me on this journey.  They offered insight or observation on one aspect or another (or a couple) of my inner conversations, even when I did not initiate discussion of those conversations.  There were so many times this summer when someone said exactly what I needed to hear, or exactly what I was thinking, or provided me a new window to thoughts and conversations I had in different places.  It became clearer and clearer as the summer passed that I am surrounded by those who gently pushed, and lovingly supported and drastically challenged, and deeply loved... me,... even when I didn't know they were doing it, or invite it.

So how much IS Free Will?  And how much IS Predestination? 

A conversation amongst my staff (who are *somewhat* - ahem - younger than myself) really showed me...

Vastly Mature Lifeguard 1 (19 years old) is dispensing wisdom to Still Growing Lifeguard 2 (16 years old), while Awesomely Sure-of-Himself Lifeguard 3 (19 years old) is listening.  My husband and I are hanging out nearby:

LG1: (in resonse to something LG 2 said) But you always have a choice!
LG2: But I didn't!  It is what my family expected me to do.
Me: Hon, there are many things you don't get choices on...
LG1: That's not true.  You ALWAYS have a choice!
Husband: (chuckle) Ahhh, to be young....
Me: There are many things I did NOT choose.  I never chose autism.  I do not choose the challenges it brings us...
LG3: Then they were chosen for you.
LG1: But you always have a choice.  You could have chosen not to deal with it.  I didn't say they were all good options, but you have a choice.

And therein lies my conundrum...  What is "chosen for me" and what do "I choose"?  Can I have both at the same time?

I have always been convinced that God puts you where He needs you to be, when He needs you to be there.  I am a great "connector", seeking (and finding) the threads that weave all the stories together, seeking the perspective that moves pointillism into masterpiece...  I can "see" clearly how the road I have walked, with every twist and turn, has lead directly to where I am at - and how each experience provided me with a skill or knowledge that is immediately relative to my life functions.  All the players and all the settings are relevant, and it so clear, that now that I am seeking the relevance in any new players/ settings...  It is painfully, disgustingly, glaringly obvious that I am shaped by my experience to meet a future goal...

Yet, I also can see how I have clung to some pictures of myself that enabled a victim mentality.  I have made excuses for not trying, or for trying only so hard, or for trying too hard, or for trying in the wrong directions.  I can see where I chose to be unhappy, or wallow in what was most frustrating, or let fear rule my decisions.  I know that I have the ability to control my response - as well as my perceptions.  And not just know with my head (saber in Spanish), but know with my heart (conocer in Spanish) - I conozco that what I choose to see is what will show up.  I have had so many lessons on that!  From miscommunications with family and friends, to setting student expectations, to defining sexiness and self-image...  I get to CHOOSE what I see and how I see it.

So how much of my reality is made BY me, and how much is made FOR me?

And why is this question driving me nuts!?   I have to deal with it either way - so does it make a difference?  Do I get to control my life?  Does faith matter if I get to make all the choices? 

Or is it about balance - like everything else... I do not get to lay the road, but I get to choose how I climb the fences?

Never forget...

I was standing in front of a classroom on the top floor (3rd) of a Catholic school 3 block from our nation's capitol - we could see the dome through our hall windows.  It was an 8th grade history class, and about 17 kids were listening to me tell stories about the American revolution era.  Then the intercom asked for a student...  shortly another...  Within about 5 minutes, 5 or 6 students were called out of the classroom.  I had no idea why...  We were on an altered schedule that day anyhow because there were guest speakers...

The guest speakers came in  my room, and a coworker took me into the hallway.  I asked what was happening, and he told me about the attack on the towers...

From there the time table is iffy in my head, but the thoughts were not.

I know I teared up immediately, I think my coworker held me.  I knew this was a systematic attack on all the cities across the US, and the day would only get worse.  I knew that my brother, a navy pilot, would be activated immediately and have to deal not only with that day but with the military action sure to follow.  I grieved for him and his wife.  I knew that the terror attacks would lead to anarchy - and that my father, a policeman in L.A. - had already guarded lives through the Watts riots and the Rodney King riots - and he would do every thing he could to protect people through what ever anarchy ensued.  My head tried to think what the most likely targets would be - Hollywood?  Disneyland?  Would they opt for maximum loss of lives or what was most culturally iconic?  My parents lived less than 3 miles from Disneyland, and my mother is a teacher too.  What would the day be like for them, waiting for the attack all day?

And my husband!.... he worked in DC, in the Northwest big business area - on the opposite side of the city from my school.  The Pentagon had already been attacked when I was informed of what was going on.  Clearly the capitol was next.  We lived on the Virginia side of the city, surely he had gotten out... He was in a place where he could walk if he had to, but surely they were evacuating the city...

And I gave myself up for dead.  Surely they were smart enough to aim for the capitol.  While there woudln't be the same drastic collapse, there would still be massive destruction. I would need to protect my students, but schools are magnets incommunities for field hospitals.  We were literally across from a park, so the community would come to us. And we would need to go to them too. 

But I still had a classroom of students waiting for me, and while I was told by my coworker that the school leadership had decided not to tell them what had happened, the schedule for the day was clearly suspended, the parents were trying to get their kids out, but not all the parents would be able to show up...  I was the one deemed capable of staying with them...

There were only 4 teachers on our team, one had a husband at the Pentagon, she needed to leave, one was the man who came to tell me the news, he needed to go tell other teachers, and the other was the old teacher I shared a classroom with - her calm presence was needed at the front door of the school with frantic parents.  Naturally, I returned to the kids.

When I walked in, the kids knew something was wrong - after all even more students had been pulled out.  I couldn't tell them, but I couldn't lie to them either.  So I told them the truth.  I told them something very awful had happened, and that I could not share details. I told them we, at the school, would do everything in our power to keep them safe.  I told them all we could do was wait.

I know that I was given 2 classes at some point (7th & 8th) - there weren't many of them at that point.  Parents were picking them up as fast as they were able - but there were some that we knew had parents that worked out of the city, who may not be able to come get their kids...

I know that I was relieved at some point to make my own phone calls/ check with family.  I called my husband's office - no answer.  I left a message that I was hopeful he was safe in our apartment and I'd be home when I could.  I got a hold of my mom - told her I was OK, but that I knew the capitol was next, and that I was committed to staying with my students - I couldn't get out of the city anyhow - since I would have had to go by the Pentagon.  I told her to tell everyone I loved them, and I'd call when I could to update.

I know other teachers must have checked in on me.  I know students kept going home.  At some point the decision was made that we had so few students left in the building that we would put all of them in the library.

And I told my students that they had to be brave, that even though they knew something awful had happened, the littles would just be frightened, and it was our job to be sure they felt as safe as we could make them.  I told them that it would be hard, but they needed to let those littles know they are loved.  We'd have to play with them even though we didn't want to play.  Most importantly, we just needed to be strong for them.

And they did it.  They gathered their gumption, went into that room with the littles, and took care of them.  It gave all of us who were left in the classrooms some respite.  The other teachers were surprised at them - but I knew had prepared them as best I was able, and I knew my kids were made of stern stuff.  I finally was able to get a break and go actually see the news...

It was nearly 3 pm before I saw the towers collapse, and the Pentagon destroyed.  We knew the 4th plane (the one that should have taken out the capitol) was downed in PA.  That was when I finally realized that we were probably not going to have to protect these students through the physical collapse of their community.

And then my husband showed up.

I was SO angry, and SO relieved.  I was reprimanded by another teacher for hugging him too enthusiastically in front of the students.  Of course we weren't sure if these students would ever see their families again...

I told my husband I had to stay.  All the teachers who had children had left.  We didn't have children...

There were also those who were very local to the school who stayed - mostly with adult children.  Any destruction of the school would have been of their homes as well, so they chose to stay.  They finally convinced me that I did not have to stay.  I did not want my older kids to feel abandoned, but we were down to just 2 of them by that point, and the the school knew the parents, teachers were committed to taking them home if they had to.

So around 5 pm, my husband & I decided that we would not be able to get out of the city to the west (towards the Pentagon), so we headed east and found our way to his parent's house in Maryland.  We spent 2 days there while things settled down.

Eventually, school started again.  My administration did a good job of being reflective, instating new policies about safety.  How could we have kept attendance better?  How could we have gotten students to parents better?  What could we do to protect our students (building) from a bomb attack?  What could we do to protect from a bio-hazard attack?  The reality, is not much, but the effort was made...

I will never forget the strength of my students.  Those very young people who were asked to be so very strong in the face of such a huge unknown.  I don't remember talking to them about it.  I do not remember getting feedback about my courses of actions.

I remember survivor's guilt.  Clearly, if I had been through so much, had such a close call - I lived for a reason.  I vowed to teach American History with renewed vigor, committing myself to America's greatness - to our diversity, the Spirit of the Law, our volunteerism.  I vowed to live every day celebrating my freedoms.  I would see dark days in the years ahead, but I knew at that point, finally, that I was a Teacher - meant to love children and show them my passion for history and people.

For 2 years I wore a black ribbon every day.

Eventually, life goes on.  The rhetoric of 9/11 was all about not wallowing in the horror or misery - because that would be a win for the terrorists.  I continued to teach, and to love my students, and learned the life lessons God had laid for me...

I LIVE every day to the fullest extent I can.  And I commit myself to a life of public service through teaching, and Scouting, and giving rides to AT hikers, and helping my children share the gifts God gave them...  And sharing the gifts God gave me...