Summer Lessons

Each of the last few summers has been a brief glimpse to what the next chapter in Nathan's life will look like.  His graduation in May won't be a mere chapter closing.  It will be the closing of an entire book of his life.  Like mine, I believe Nathan's life will resemble Tolkien's great tome "The Lord of the Rings".  There will be chapters, but there will also be entire books in his story's telling.

This book closes at the end of a long quest with a great victory in it's closing chapter.  Unfortunately,  most of the relationships that Nathan has will end with it.  His solitary existence over the last 3 summers have been a foreshadowing of how the new book's beginning.  Most who profess their love and friendship, even those who have shown him the most kindness will quickly and quietly fade from the story.  

Just like a new book, Nathan's journey will continue, but with the newly introduced story arcs and  cast. Much like Tolkien, the protagonist in this story ends this book in great joy and celebration.  His journey's guide, the aged, yet still "incomplete" wizard knows where the next book begins and looks toward it with great trepidation.

For now, we look forward to a long coming victory whose arrival is now easily measured in weeks.  We will celebrate and revel in the joy it brings.  Still, I can not shake my trepidation the next book's opening brings.

This book's closing also marks this blogs closing.  This is the final entry.  Should the passion to write our story return, I will open a new blog once the second book of our journey has opened. Then again, I may choose silence.  I am finding greater solace there with each passing year.  I know far less about what the opening of the new book means for me than for Nathan.  Time will tell.

Little Black Slippers

Those of you following along will have noticed that 2015 has been a difficult year in "Bateyland".  Significant change has invaded every aspect of our family's life.  At the same time, there have been moments that left me in slack-jawed wonder and deep appreciation.
  
My lack of "mountains to climb" and "adventures to pursue" has been a recurrent theme, at least in my head, for most of my 40's.  I've felt "adrift", particularly in the last couple of years. Answering "Ok...what now?" has been impossible.

Enter a pair of little black slippers, the stretchy, satin looking kind that seem very popular with ladies from cradle to grave. 

This particular pair was adorning the feet of a rather quiet, much younger coworker.  Everything "ankles up" was standard dress code (slacks, etc.). Most would never have noticed that they weren't flats, but we all know I'm not most.  To my hyper-observant mind, they may as well have been chartreuse rather than black.  My sense of humor generally takes over from here.   I made some passing, good-natured jab about her "dress code violation".  She responded that she was "tired of her heels".  I considered this a completely valid reason for wearing them then and every other day for that matter.  I don't know how you ladies don't end up crippled by those things in the first place.

While "Black Slipper Girl" (which we'll abbreviate as "BSG") and I didn't become "friends", we were henceforth "friendly acquaintances".  Hellos in the hall, brief small talk on occasion, and that was that.  At least that's what we thought.

A few weeks ago, BSG and I encountered each other in the cafeteria.  This time she requested a brief, private conversation.  One of her "little ones", her youngest has been diagnosed with Autism.  They've caught it at the perfect age to make the greatest impact. Coincidentally, they caught it in her at the same time we caught it in Nathan.  We talked a bit.  She received the same offer of support that all "newly diagnosed parents" get from us and my cel number.  We chatted a bit that day via instant message as well.

A little later, an unexpected text from an unknown number arrived.  There she was, a very close copy of her mommy in miniature, with big, deep, soulful eyes.  Even in a picture, those eyes give a glimpse of the "high-octane" intellect Autism is thinly veiling.  The picture made it impossible not to fall in love with its subject instantaneously.  Her tribe had found her.  No matter what life may bring her, she is not alone.  She is "of my tribe", Nathan's tribe, Josh's tribe, Blake's tribe, the tribal roster is long.  She has her loving, supporting family, and now she has her tribe.

In our original "private talk" BSG and I firmly agreed that neither of us believe in coincidence.  We share a common belief in God's Providence.  A seemingly chance encounter between a pair of little black slippers and an old Autistic guy with a strange sense of humor placed us on a collision course that will benefit both families.
  
All I have learned growing up "undiagnosable", but unquestionably different, all I've learned from the brilliant health and mental health professionals in our journey with Nathan, all the techniques designed for and taught to us by brilliant educators in two states, our whole body of experience, and our hearts themselves are open and available to BSG, her husband, her relatives, and later her children.  In my quest for accomplishments and adventures, I'd completely overlooked something far more crucial.  Purpose.

Purpose is the only thing that can give any meaning to life's difficulties and pain.  It makes the suffering in both Nathan's and my journey valuable and useful.  Purpose is the bond that makes us a tribe.  Purpose ensures that those dealing with the brutal impact of a new diagnosis know they aren't "alone in the cold".  Goals, accomplishments, and adventures  can do none of this.

Purpose changes everything.  Purpose brings my life's real value into focus.  Purpose makes a random encounter with a young mom in little black slippers tangible proof of God's Providence

Inescapable

My writing process is extremely unpredictable.  My readers are not. Victorious, happy entries get copious likes and glowing comments. Those entries that "pull back the curtain" get crickets. I'm OK with it. Everybody likes a "happy ending". Few lack the stomach for the details that created it, or worse, the chapters that end in unmet goals, unanswered questions, or hazy, unknown outcomes.  Those are the "real confessions". They are the reason I write.  Those fated to face them need them far more than the rest need to feel pride, joy, or get a good, old fashioned "warm fuzzy".

Never fear dear ones. I have a glorious "happy victory story" processing in my head.  I just can't write it yet. For now, you get another raw, gut-level confession.  I won't hold your reaction, or lack thereof against you.

“The opposite of depression is not happiness, but vitality and my life, as I write this, is vital even when sad." -- Andrew Solomon

I've previously written about my new "heavily medicated" state and its benefits.  With time, I've learned the boundaries my medications possess.  What my psychiatrist and I have done is medicate away "the darkness". When depressed, I virtually never experience the deep feelings of isolation, failure, and worthlessness.  Make no mistake.  This is an immense blessing.  Removing the darkness has exposed facets of Severe Depressive Disorder that I'd learned are there, but had never been able to directly examine.

Andrew Solomon is absolutely right. The opposite of depression is vitality.  The lack of happiness and the dark feelings and thoughts hide an equally insidious symptom.  Depression suppresses my "ability to live".  Removing the darkness has left me with an almost persistent, "smoldering depression".  The debilitating darkness is all but gone.  In its place remains a passionless existence.

Only my passion for my family and closest friends withstands it.  Cooking, shooting, musical study, astronomy, astrophysics, all of my most passionate activities hold no allure.  My "group aversion" goes into high gear.  If there's a group and you want to put me in it, even if my dearest friends are a part, I ain't gonna.  Social interaction drops to very small groups of my "inner circle", one-on-one, or not at all.  A large part of me just ceases to live.

Thankfully, the meds keep my head clear enough to work and significantly dial down my irritability.  The meds do nothing for the often intense physical pain that accompanies depressive episodes.  My doctors say they have nothing to offer for that.

The strange dichotomy for the "medicated me"  is that I always knew the darkness was temporary.  I knew it would pass like a storm.  I still believe that depressive episodes are just that, episodes. This passionless existence feels permanent.  It's strength varies at seemingly random intervals, but feels quite permanent.

It's like standing under an overcast sky.  You know the beautiful blue is up there, but can't currently see it.  You know that the clouds always pass, but there's always a nagging fear that maybe this time they won't.  Until they do, I put one foot in front of the other and live for each moment when a little blue peeks through.

Bravado

"Bravado" has been one of my favorite Rush songs for years.  It's been an anthem that aptly describes  our family's commitment to walking the path before us, living life according to "our calling", and withholding nothing in raising our boys.  I used to tell Amanda "Nathan will get the therapy/meds/etc. he needs if it bankrupts us." 

If we burn our wings

Flying to close to the sun

If the moment of glory

Is over before it's begun

If the dream is won

Though everything is lost

We will pay the price

But we will not count the cost

When Nay was first diagnosed, it was paralyzing for me.  It didn't change my behavior toward him nor my love for him, but hopes/dreams/expectations were obscured in a thick cloud of uncertainty and unanswered questions when we attempted to look forward.  With a little time and a lot therapy, the true strength of Nathan's intellect showed through.  It was all we needed to see.  I say we.  Amanda was probably there the whole time.  Our task was clear,   keep him on grade level academically and help him "catch up" socially and in his verbal learning and communication skills  as quickly as possible.  Our hope was to have him ready for college by the time he graduates high school.  It presented a lofty summit, a wide river to swim for us all.   Refusing the challenge was unconscionable. 

When the dust has cleared

And victory denied

A summit too lofty

River a little too wide

If we keep our pride

Though paradise is lost

We will pay the price

But we will not count the cost

The summit proved too lofty, the river too wide, at least for our abilities and resources.  I'm willing to concede that it may be too lofty/wide for anyone with any level of resources.  It's a small consolation, a thin blanket against cold reality.  

Still, we're proud, insanely proud.  Only those who have known Nathan since our "Texas life" can truly grasp how far he's come.  Those who saw him very early here have some idea.  The only real consolation is in looking back and seeing the tiny speck far below that was our starting point 16 years ago.   We may not have made the summit, but we've climbed far higher than I ever dreamed when we stood in that tiny spot.  

Again in life our path diverges from most of our peer group.  As they work on choosing universities, pursuing scholarships, completing military applications, etc., we are working on SSI, ARCO, and other disability services applications.  We may not have succeeded in what we'd hoped, but we will not stop climbing.  We will continue to swim with all our might.  

Unlike one phrase in "Bravado", we consider nothing in vain.  Love does remain. We will climb until our dying breath.  We will swim until the shore is reached, or until time pulls us under.  We will continue to pay the price.  Even at our final moment, we will not count the cost.

And if the music stops

There's only the sound of the rain

All the hope and glory

All the sacrifice in vain

And if love remains

Though everything is lost

We will pay the price

But we will not count the cost.  

Irrelevant

In my last entry, I posed a question.  It reflected a profound, undeniable, existential anxiety.  In short, I asked "Am I a fool for living my Quixotic life?  Am I tilting against windmills that will batter me as they did Cervantes' Don Quixote, remain standing, and carry on their existence unblemished?"

The question remains unanswered.  Events since my posting and the epiphany they brought have changed the playing field.  Answered or unanswered, the question is irrelevant.

Why irrelevant?  Because, in my own way, I AM Don Quixote.  The outcome of the war is irrelevant. The effect of each battle is irrelevant.  Whether I am actually making much of a difference is irrelevant.  Those things that drive me to mount my steed and take up my lance to live the life of a Knight Errant are not choices I make.  They are who I am.  Somewhere in the twisted wiring of my brain lies the inability to turn a blind eye to suffering, leave ignorance as I found it, or see the windmills in front of me as anything less than monsters.  I haven't chosen this life.  I was built for it.

Unlike Cervantes' Don Quixote, my path was not set by reading old chivalry texts until "his brain dried up and he went completely out of his mind."   My path was set by the "miswiring of my brain" combined with the faith that I refuse to merely espouse.  To live differently is to deny meaning and purpose to what has made me who I am, where I am.  Denying my very nature and seeking to be what I am not yields my on path rife with pointless suffering and lessonless hardships.  I can think of few things more tragic than a life lived in desperate struggle to be what one is not.  

Should I be doing what I do?  Am I making any real difference?  Is it the world that's insane, or just me?  All are valid questions.  I can leave them unanswered because their validity is outweighed because who I am weighs far heavier than what I do in existential dilemmas.  

Pointless?

Yes dear readers, it's time for cognitive dissonance to again rear it's ugly head.  The "forecast" would seem to indicate that Nathan's senior year will be rife with it.  It's becoming harder and harder to avoid wondering if all my efforts to promote awareness, acceptance, and understanding are making any real headway, or are they just a cute novelty that lets people feel good about themselves each April while doing so with unchanged thoughts, feelings, and beliefs toward Autistic people.
 
I've long identified with "Don Quixote" in his quest to prove his merits as a knight errant by righting wrongs, defending the defenseless, and demanding honor for the downtrodden.  The only problem with the "dear Don" is that he is patently insane.  I've long accepted that when one undertakes Quixotic quests, either he, by definition, or the world around him is also "patently insane".  Herein lies my dilemma.

My foes are somewhat difficult to describe, much less name.  Ignorance is the most obvious, but there are other, equally insidious windmills to be jousted.  If I can not name them, I will at least do my best to describe them.

This past Friday's game was Nathan's first appearance as an on-field sports trainer.  At West Monroe High School earning such a position requires high grades in Sports Medicine classes and large amounts of "clinical" time learning the skills required.  Taping doesn't come as easily for him, so he largely handles "hydration duty".  He's a highly trained "water boy", but is also trained to help with any number of other tasks if called upon.  The job isn't glamorous, but in the Louisiana heat, is absolutely vital to keeping the players healthy.  Nathan is the proudest "water boy" on earth.  He performs his tasks with great diligence.  The joy on his face when he is on the job is unmistakable.

During the game, a friend asked me the dreaded "what's after high school" question.  Being that this is someone I value and trust, I gave an honest answer of utilizing social services to get him a part time job and that he would continue his education, first at the local community college.  His next question struck me like a shovel to the face.  "Are you preparing him to live in a group home?"  I was stunned almost beyond words.  My answer was of course "no".  Nathan will finish high school with above a 3.0 cumulative GPA.  He is actually more prepared to live on his own than most kids preparing to leave for college next fall.

Here's where the cognitive dissonance comes in.  If I can't adequately show Nathan's abilities, intellect, and potential to someone who has been in our lives for years now, what chance do I have getting it done on behalf of kids I can't defend to an audience I'll never meet?

Social media was again filled with his classmates and "friends" taking selfies after the game and celebrating the win.  Many in his class participated in a community improvement project on Saturday (painting the town's flood wall with self-styled artistic images).  Lots of pictures.  No Nathan.  We had no idea folks from his graduating class were involved.  Probably the only thing worse than underestimated is forgotten, non-extant.
 
It all leaves me wondering "what the hell am I actually" doing here?  Am I jousting windmills or fighting real monsters?  Am I changing the world in some small way, or am I just providing people with a yearly "low-cost, warm, fuzzy feeling".  Are the images on my arms inspiring reminders to think differently, or scars from a war I never had a chance of winning?

Most importantly, do I pound the dents out of my armor, craft a new lance, and prepare for the next battle, or do I place my splintered lance on the pile of those from other failed adventures, and hang my breastplate above the mantle as a reminder of battles that my heart demanded, but my head should have quashed before the first charge was made.

The Itch

We've all had it, that itch, the one that won't quit, the one you can't scratch "in polite company", the one on your foot while you're driving.  Maddening, ain't it.  Welcome to having Asperger's, OCD, or any of the forms of Autism that cause obsessions.  Welcome to "the itch".

It seems all of my tribesmen have their own itches.  Make no mistake.  You can't have just one.  Our "standard options package" comes with one for every occasion.  If it can be pondered, it can be obsessed over.  Entertainment, hobbies, peoples' body parts (noses, eyes, ears, hands, feet, stay with me here folks.  It's a "family show".)  The objects of obsession are limitless.  If we love you, bet everything you own, we obsess over you or something about you.  If you dislike us, we may even obsess over the "why" and "what did I do".  Personally, I've found that declaring those in the latter category as "just an asshole" tends to give me a scratch that is perpetually effective. Accurate or not, it works and "gets me through the day" when those folk are encountered. 

Scratching it?  Wish it were that simple.  I can't reach far enough up my nose to get to my brain.  These can be "scratched", but here's where the real trouble starts.  Scratching these requires mentioning, touching, staring at, or some other socially awkward behavior toward the object "in the crosshairs" to get a fleeting moment's relief.  

We fight incessant battles between a runaway mind and our will.  We don't want to "scratch".  Try telling someone at work or school "you have such unique, interesting ears".  The momentary horror on their  face can be rather entertaining, but there are definite "long term costs" to such behavior.  None of us suggest indulging in "a good scratch" on a regular basis.  I don't care how much awareness and acceptance there is out there.  The average neurotypical isn't aware enough for that.  

Those who love us most find things they value more than "the itch".  We can even reach an acceptance level with our closest where our itches are "out in the open" with them.  Sometimes, we can even share a laugh.

Welcome to our war.   The first shots are fired when our eyes open in the morning, but may not stop when they close in sleep.  We even itch in our dreams.  

Outnumbered and out gunned by an enemy that never sleeps, this is one of our wars.  We resist, evade, medicate, and most importantly, cling dearly to those to whom our itches don't matter.

A Tale of Two Families

My die-hard readers will very quickly recognize this entry hearkening back to "No Country for Old Autistics".  I've recently been pondering the strange dichotomy between those families who value both Nathan and me both in spite of, and because our differences, and those families who have members, generally the children, Nathan's peers, who value Nathan, but find me completely unacceptable. I've gone to equal lengths to know and show tangible appreciation for both families. The polar reception I've gotten has left me perplexed.

As usual dear readers, when I'm perplexed, I drag you all "along for the ride".

This topic would scarcely pass muster for a blog entry had I not invested as much thought into it over the years we've know these two families. Their reception of Nathan only differs due to the personality differences in the individuals involved. There is little if any quantifiable difference in their acceptance of Nathan.  My experience could scarcely be more different.  All examples I'll use are primarily actions-based.  I place very little stock in words, though some examples will be of things said that reflect the opinions of the speaker.

I'll start with the kids, Nathan's peers.  Both are real, loyal friends. They each involve them in their lives in unique, but equally valuable, valid ways.  Both feel very protective over him and have no tolerance for any form of mistreatment that "lesser humans" may wish to attempt. Both have proven their loyalty behaviorally.  

For anonymity's sake, I'll refer to these families as Family A and Family B. Children from Family A value me equally with Nathan. I receive full acceptance and feel very loved by the whole group. I consider the parents my friends and the children as lovely blessings who pour into my heart in ways they can't yet understand.

Family B continues to perplex me. The older children place great value in Nathan.  Their level of acceptance and value toward him are indistinguishable from Family A. The parents are benevolent toward him, though not as involved with him as Family A.  

Things get strange when I enter the picture.  Family B's kids are unpredictable. They can be engaged, respectful, and almost accepting at times. At other times, their indifference and almost palpable disdain borders on dismissive and rude. The adults in the family don't perplex me at all.  In their eyes, there is something very wrong and unacceptable with me. I won't give quotes of things they've said to my face. Doing this would identify them to my "inner circle". Suffice it to say, these are some of the most insensitive, rude, and demeaning things anyone has said to me in my adult life. I've learned the hard way to avoid the adults in Family B whenever possible.

The solution should seem easy enough. Avoid all of Family B. Allow Nathan his relationship with the Family B kids and move along. It's not that easy.  I can't help but love those who love my children. I've wanted desperately to turn it off, but can't find the switch. It's a disconcerting position at best.  

I'm left with few options. Family A is golden, and are treated as such.  They enrich our lives in more ways than I can list and allow us to do the same for them. I won't interfere with Family B's relationship with Nathan.  He enjoys and gets great benefit from it. For his sake, I will accept my debased humanity in their world.  

Let me close with a disclaimer. There are several candidates for both Family A and Family B's position in this entry. Abstraction is used to protect both the golden and the guilty.

Allies

I've been on a bit of a tear this week.  It's the last week before Nathan's senior year.  Apparently, senior classes here declare this "Senior Week" and hold all forms of private gatherings, etc.   Those of you raising special kids already know where this is going.  We knew nothing about it.  Nathan wasn't made aware of anything.

I freely confess.   I "went Chernobyl".  My Facebook status read "Apparently being autistic trumps being a senior."  I was wildly angry with a rage fueled both by my anger for Nathan's being "forgotten" yet again, and by again being forced to watch my own early years replayed before my eyes with my child as the "protagonist".  

Fortunately, both Nathan and I have allies.  In this case it was a dear friend who LOVES Nathan.  Actually, whether she or her daughter love Nathan more would make for an interesting mother/daughter blowout.  The bonus of the deal is that daughter's boyfriend is quite fond of Nathan, and more importantly, respects him for who he is.  

I contacted this dear friend via chat and WENT OFF.  As all real friends do, she filtered all the shrapnel from the blast and saw what I was saying.  One sentence and everything changed.  She told her daughter.  Daughter and boyfriend immediately volunteered to pick Nathan up and take him to the next party.

I have some great friends, but some go that extra step that defines an ally.  Friends listen.  Allies act.  

Nathan had an amazing time at the party.  It's his first, official "senior year memory".  He got to make the same kind of memory that "everybody else does".  His friends came in for a visit upon bringing him home.  Apparently he was greeted by the crowd in a fashion that those my age remember as the "Norm at Cheers greeting".  He walked up and a rather unified "NATHAN!!!" rang out.

Three people, that's all it took to change the ending of the "rerun" I was watching.  Like military allies, our "life allies" saw us under attack from reality and came to our aid.  The pictures from the party show my boy "with his people" and loving it.  His smile and demeanor delivered an undeniable message.  

The 800lb gorilla in the room at this juncture is my point of view.  Do I choose to remain angry that he was forgotten by many who regularly profess their affinity for Nathan?  No.  I choose a different view.  I won't "prosecute them as adults".  These are kids.  I refuse to believe that Nathan was "purposefully forgotten".  Seventeen and eighteen year olds just don't have the maturity and life experience to be held to such a standard.

I choose to view Nathan's peers in light of his reception and treatment when at the party.  Make note dear readers.  For one brief moment, I'm setting aside my jaded cynicism and feeling very happy for my boy and proud of his peers, in spite of their "forgetfulness".

I was quite tempted to just keep this entry to myself and find some other topic.  My self-imposed transparency standard wins again.  My allies, though unidentified, deserve more than a simple "thank you".  Their simple, but effective actions changed everything.

Superpowers

We all have them, at least all of us on the spectrum do.  At least this is what I believe. I've met far to many of my tribe to believe that "savant abilities" are the rarity they were once thought to be.  Recent experience has definitely supported this position.

I was watching The Food Network back in January, just a day or two before Amanda's mom passed. It was just Nathan and me in the house.  He came out and explained to me that he could do something interesting.  I paused the TV.  Culinary idea theft is a passion of mine.  The boy telling me he can do something extremely unique was worth a pause.

He presented me some easy examples, so I decided to put his claim to the test.  The results were impressive.  I continued to push the limits of his newly declared ability.  It became very obvious that Nathan has a Superpower.

A Superpower?   Yes.  That's what I choose to call them.  I dislike the stigma carried on the word "savant".  It conjures up images of people with one incredible mental ability but with crippling deficits in all others.  That definitely doesn't describe Nathan, nor does it describe me.  

At first, Nathan didn't believe what he could do was real.   I assured him it was and used the "Superpower" analog to help him accept it and enjoy his special ability.  I assured him that I'd talked to our "shrink", and that she fully believes it and is impressed beyond words with what he can do.  I've seen him using it to connect with people recently and as an "ice breaker" with people he meets. He's leveraging his far earlier than I did mine.  

The more astute readers have noticed that I haven't disclosed the details of Nathan's "Superpower".  I'm not going to.  Some would use him for entertainment as though he were some trained monkey.  Not interested.  

Nathan's ability has been demonstrated for trusted family and friends.  Those he chooses to show are his choice and his business.  

I've known numerous other people "of my tribe" who have Superpowers of their own.  Yes, even I have one or more.  Unlike my approach with Nathan, I will disclose my own.  

I am hyper-observant.  My brain unconsciously records massive amounts of data about people I encounter.  Once a set of norms has been identified, I can recognize people from great distances by their gait, stance, and several other characteristics.  I can determine a person's emotional state by those same measures, as well as the two syllables of "hello" when they answer the phone.  I can even read "tone" into text messages.  I have NO IDEA how, though I suspect my brain has a "norm" identified profiling the person's normal word choices and immediately pics up on deviations.  

It's taken most of my life for me to learn to utilize this rather strange mental ability.  It comes in very handy in technology work and in the corporate world.  Lying to me is VERY difficult.   Folks may try, but it usually sets off alarms in my head.  In technical designs, I see the big picture and minute detail simultaneously and with equal understanding.  I once thought everyone could do that.  

My left arm bears a tattoo that speaks to both the Superpowers autism gives and the things it takes away.   It has become the symbol of my message to the world.  Imagine what we'd be if we had all that autism gives, but lacked nothing it takes.  The missing piece is much smaller than what remains.  See us in terms of what is there and not what is missing.