Testing…testing

The evaluator’s job, unpack how this three pound package of lobes and folds crammed with 100 billion neurons is functioning or not functioning.  How does he do this? Testing; long, arduous, sometimes boring tests. Balboa Naval Hospital; at the moment, it seems to be going well.  No problems, Zack is compliantly answering their endless list of questions.  This portion is an assessment of his verbal I.Q.  At this point, I am a proud mama, he is obviously brilliant.

His high verbal abilities made him easy to be captivated by, he sounded like a little professor with a cherub voice.  A couple of months after starting pre-school, when he did decide he was ready to talk to his teacher, he sidled up next to her on the playground, and almost inaudibly said,  “The Madagascan hog-nosed snake is mildly venomous.”  Sunny kitchen, taking care of household chores, I would frequently hear this three year old cherub voice calling out from the living room, “Is it territorial?,” “Is it dangerous to humans?,” “Does it live in the United States?” I lived with this constant parade of questions about animals, and then music, and then geography, and on and on for all of Zack’s childhood.  He used words to understand his world. He visited his cousin’s Kindergarten class and when asked where he was from he replied in his distinct, perfectly articulated, little professor voice, “The planet Earth.”  Why would anyone suspect that such verbal giftedness could be a sign that something was wrong?

Zack is tiring of all these questions, he complains.  The tester, in a very patronizing voice begs, “Just a couple more.”  Zack, in a very not so three year old voice says, “A couple means two.”

This looks simple enough, take these three one inch square tiles and make an “L” pattern with them. This portion of the evaluation is testing his performance I.Q.   I wait, in anticipation for him to continue his obvious brilliance. His pudgy hands reach for the tiles; he doesn’t seem to understand the instructions.  Again, the tester makes the simple shape for him to imitate.  Zack takes the tiles and pushes them toward each other but seems to be blind to their edges. He’s pushing the corner of one tile into the edge of the other. He can’t do it. Now the tester pulls out a piece of paper and draws two parallel lines, and asks Zack to do the same.  Whoa! Not looking so brilliant now, as his lines look more like a couple of rivers running their course through the Alps than parallel lines.   Last, an easy puzzle.  A cow, separated into three parts, head, body, butt.  I look on incredulously as I begin to see what is not working in my son’s brain.  He has no capacity to take these pieces and put them together in a way that makes sense. The tester asks me, “Does he ever play with construction toys, puzzles, draw, or color?” No, no, no, and no. 

Each one of our brains seems to hold a great mystery; each one as unique as our fingerprints. When we look in wonder at the multiple ways that these distinctive differences can be expressed; musical prowess, physical dexterity, mathematical aptitude, we rejoice in how beautifully knit together we are.  How we enjoy watching the ice skater fly through the air and land the impossible jump.  It makes us feel strong just watching them.  But, how do we feel when we come in contact with someone whose differences are not expressed in beautiful ways, but in ways that appear weak? I ask this, not in a condemning way, but in true sincerity.  Personally, I feel repelled by weakness…I want to run away.  I await your honest replies.

Beautiful Boy

If I had been paying closer attention, I might have noticed the sound of the gravel under my feet as I stepped out of my car on that fall San Diego morning, but the sun was so pleasing on my face, and the air so perfectly infused with sweet ocean and foliage, I simply walked blissfully toward the preschool where I was to pick up my three year old from his morning class.  If I had been paying closer attention, I might have noticed the smell of tar soaked railroad ties, or the gleaming white iron tracks that marked my path toward the door of a seemingly innocuous preschool classroom.  There was a train awaiting me in there, and I never saw it coming.

A stone faced preschool director informed me that we needed to talk.  She took me aside, never a good sign, saying something like, “There is something wrong.”…Something wrong, something wrong?, SOMETHING WRONG!, with my beautiful boy? But how?, he is so obviously exceptional; spoke early, first word nine months, full blown sentences 18 mos., reciting poetry with effortless memorization at three.  She begins to describe his behavior in the classroom; no eye contact, never speaks, doesn’t play with other children, lays down in the corner and stares at the wall when things get loud and overwhelming.  And here it is, the first time I hear the word Autism associated with my child.  “I think he may have PDD, or Asperger’s,” she says, “It’s a form of Autism.”

Nauseating reality shifts my mental equilibrium.  I am spiraling downward as my mind begins to recount a slide show of moments, each revealing the obvious. This cold, unsmiling, messenger has spoken truth.  Denial, 1^st time mom, whatever the reason, only now could I pull the pieces together to form a clear picture.  The spinning, poor eye contact, and repetitive behaviors, like a specters bony finger pointing to a sign that reads “Autism.”  “You should get him tested,” the director suggests.  I have no memory of what I said to her in response.

I walked back to my car, hand in hand with my beautiful boy.  A lifetime has but a handful of moments in which one remembers so distinctly the shift in trajectory that an event casts. This was one of those moments. I walked into the classroom one person, with certain goals, beliefs, and dreams, and walked out an altogether different one.  No longer did the sun shine so blissfully on my face, for now my eyes were fixed on the gravel under our feet, and the seemingly endless steel track that was laid out before us.

We dreamed for him.

Right from the beginning, there was nothing typical about this boy's life.  I would receive the warning from my doctor that I should by no means even consider delivering him in a typical manner.  The doctor was looking at a sonogram of the boy.  His computer had templates to measure the size of this highly anticipated first born.  The templates maxed out at 12 lbs.  The ring that rested like a halo on the child's head was not even big enough to fully encircle the glowing white cranium on the monitor.  If I chose to attempt to deliver naturally I might face hours of unfathomable pain, only to be followed by an emergency C-section.  Other options included having to break the cherished son's collar bone to get him out, or the equally attractive extra episiotomies.  In a military hospital, on an island in the middle of the south china sea, these options sounded even less appealing.  I opted for the planned C-section, 7:00 a.m. the following morning.

As was the case with many C-Section babies the baby boy had to spend time being monitored for any breathing difficulties that might result from not squeezing through the birth canal and having the fluid forced from his lungs.  He looked ridiculous in the NICU; at 11lbs 1oz he was three times the size of most of the babies residing there.  After a couple of hours, he was given a clean bill of health and allowed to accompany me to my room.  There he enjoyed a long line of hospital staff visitors simply longing to take a peek at the behemoth child.  It wouldn't be the last time this boy would demand that the world sit up and take notice.  As proud parents of this extraordinary child, it was hard to imagine that anything could possibly keep our dreams for him from coming true; after all, he was everything one could hope for in a newborn.  Big, hardy, and vigorous.

This portion of the back story feels important because I think we all have a tendency to believe that a child that would experience developmental, emotional or psychological problems in the future would have warning signs that parents would pick up on.  That they would understand that dreaming for this child could only lead to heartbreak and that a wiser more stayed response would be called for.  My point is this, we dreamed for our son, we looked at him with the same awe and wonder that all parents do with their first born, and imagined what his life might look like with stars in our eyes.  It is what makes the question of God's fairness flicker to life like a neon sign in my brain. It is my desire and hope that this blog resolves for me, as a mother, and for others reading this the questions of, "Who is this God that allows dreams to be dashed and trains to obliterate homes? Can he be trusted?"

Back Story

January, 18^th, 2013; the day the whistle of the oncoming train stopped being a far off foreboding and became a full blown reality as it tore right through the center of our home.  It barreled through these walls with such ferocity that the residents were left strewn in all directions; deaf from the screech of steel, gasping through choking fumes, horrified at the destruction.  To those observing this event from the bottom of the pine cone littered driveway that led to the peaceful chalet style mountain home it was no more concerning than the ping of a smoke alarm that needed its battery changed.   After all, he was just an 18 year old young man who had been caught smoking pot. I, his mother, however, understood fully all that this simple act of defiance meant.  I had heard the sound of this train coming for as long as I could remember.  Not every night, but many, I would lay my head down on my pillow, and like an ear pressed against the cold iron rail, I could hear what no one else could; the rumble of steel, far off.

This is the first post of many that will describe the journey our family has taken from "Normal" to where we find ourselves today.  It is about how mental illness has changed us forever.