Thursday, August 15, 2013

Getting It: Our Journey to Discovering, Accepting, and Eventually Embracing IT

From Saturday, 20 August 2011 post on my personal journal:

I remember when I first realized we were going to be parents. It was a miracle and surprise, and although we feared we weren't yet ready for our unexpected blessing, we quickly began singing a tune of loaded excitement at our future bundle of joy.  I remember choosing names—I chose a girl name and he chose a boy name.  I remember the wonderful 3-d ultrasound at 16 weeks where we got the news that we would be blessed with a boy, thereafter referred to as E.  And I remember feeling the bliss of expectant parents as we began to dream of who E would be and what mark he would leave on this world.  Would he be like me?  A poet, an empath, a dreamer with his feet on the ground?  Or would he be sharp, detailed, disciplined, and graceful like his father?  Would he be smart like us, would he like concerts and music and seeing the world and reading books about far away places?  Would he have my warm, goofy sense of humor or his dad’s dry wit?  Would our future president-astronaut-physicist-hipster-genius-doctor-son be supercool or supersmart?

Getting It:  Our Journey to Discovering, Accepting, and Eventually Embracing IT

The first day of E’s life was magnificent.  He performed well on his APGAR, his birth weight was perfecto, and a comfy 7#5 oz  and the labor was otherwise uncomplicated.  He immediately won our hearts and from the moment I held him in my arms, we knew that our little buddy would be the most special thing in our world.  We just didn't realize then exactly how special he would be and how much he was going to change our lives.

It was the second day in the hospital after birth, when reality started to hit us.  I remember feeling helpless as a new mom as my perfect little baby screamed and the nurse’s retort was that I was spoiling my baby already by holding him too much and putting him into the bed with me.  She pointedly reminded us that he is a newborn and  that “He’s just adjusting to his new world.  This will just take time and all will be well soon enough.”   But hours and hours of implacable crying hardly seemed "normal" to us.  But we were willing to accept that we were novices at parenting and that we'd have a lot to learn. 

 Despite my Human Development undergraduate work. 

 Despite the many books and research we had done.  

We were simply novices with a lot to learn.

It didn't take long, however, to realize that in terms of adjusting, things were getting bad before they were getting better.

We ran full-on into colic.

I remember one night for Piggledy and I that was especially bad—our E belted full blown screams and ear piercing wails all night long.  For ten unrelenting, unforgiving hours, our little buddy remained rigid-bodied, red-faced, and tear-stained while we traded him from one another's arms. 

We tried everything that night:

We rocked him to the left.  We rocked him to the right.  We rocked him up and down and all around. We rocked him in a chair.  We rocked him on our lap.  We hugged him as best as he would let us with his rigid little body and balled up fists and we fed him and burped him and rubbed his belly and his back.  We swaddled him.  We sang to him.  We hummed, we caressed, we prayed and we cried—big fat tears of defeat and helplessness.   

To this day, thinking of that night still brings me to tears.

That was the first night that the question of whether something was wrong became a fact.  That night, we KNEW that something was just not right with our little boy and it was much bigger than the colic.

We took him to his doctor.  We tortured ourselves with images of painful, life threatening ailments that we couldn't figure out but all that he was diagnosed with was reflux stemming from “overall colic.”  I immediately began an elimination diet to see if it changed my breastmilk. I got down to bread and water hoping to see a change, but alas he was still screaming.  With a heavy heart, I stopped breastfeeding, and we decided to try some formula.  We made a few switches there, little by little, from soy to reflux formula, to other specialty types.  Still no progress.  Our buddy was vomiting terribly, suffering from painful gas, and had messy, malodorous diaper destroying bowel movements.  I remember poring over websites and books, begging to find answers about our growing concerns with our "high needs*" child.  We were stumped.

Maw-Maw proudly Rocking E's
vomit stains after feeding him.

Eventually the “colic” began to wear away and our little boy began to show signs of evening out.  Other than still not sleeping through the night around six months, he was meeting all of his developmental milestones, and some of them rather quickly.  Quickly, yes,  but I won’t say unremarkably.  Each new victory brought with it a covert and unexpected slant.  One such example was his absolute battle with learning to sit up; he was enormously afraid of the new position in space...i.e. he was proprioceptively afraid to sit up.   But with a little time and  plenty of goading, he eventually sat like a good baby, but it stuck with his unique manifestation of anxiety about sitting up to look around at his new world.  Another twist that we found remarkable was in our baby boy's language development.  I remember, at nine months,  that our little guy bypassed the mundane “ma ma” and “da da” for words like “hot dog,” spoken with his little baby voice but the clarity of an adult.  It was, to us, both striking and magnificent.  I remember gushing to my friends and my clients that I just knew I had a baby genius in my care!  I had birthed a genius and the world would be in his hands..."

Yet as time went on, there were some other strange developments to accompany his brag-worthy accomplishments.  I remember one day realizing that my now one-year-old wasn't ever calling my name the way other one-year-olds we knew were doing with their parents. 

 “What happened to his ‘ma ma’ step after all?” I began to wonder. 

 I started taking notice that if he was in serious distress, that he would scream in his sobs to “Moo-m.”  Yet, he wouldn’t ask for me at the dinner table or when we played or when asked to point me out. 

 Looking back now, I can recall a million episodes of subtle head-scratching moments, but we'd always dismiss them.  I even remember at one point casually wondering aloud to friends and family if my child could be autistic.  "He's so different.  He's so unique."  Yet, just as casually as the thought wandered into my head and onto my lips, was it tossed again to the wayside. 

But more occasions arose, more head-scratching, lip chewing, moments of "hmmm," where we realized that our child's behavior and actions were becoming more of a puzzle everyday and we were discovering a great deal more questions were forming than answers.  

Newborn sleep habits that we were once told he would grow out of, quickly became more permanent.  When E approached the nine month mark, we began seeing parasomnias, night-terror episodes that were frustrating, frightening, and frazzling.  We chalked it up to a number of things:  maybe he had anxiety, maybe we weren't stimulating him enough, maybe he was cold, maybe he was hot, maybe he needed a night light, maybe he needed darkness, maybe he needed silence, maybe he needed sound…..we analyzed his sleep environment, our parenting tactics, our lifestyle, even our jobs.  For the next two years, we ran the gamut of sleep training methods approved and maybe even disapproved by all the bigwigs. We found we still had a whole lot more questions than answers, a baby that wasn't sleeping and still having intense diaper occurrences, and a pediatrician with not a single feather ruffled.  Our parenting tactics were beginning to deviate from the norm to make allowances for our child’s unique manifestations and I remember our peers all remarking that we were being overprotective and anxious, that if we just stayed on the beaten path, that we’d realize he’d grow out of it.  

All around us, we heard, again and again, from everyone “just wait and see; he’s going to grow out if IT.”  IT made us feel stupid, crazy, misunderstood, even by our closest kin as we wondered just what IT was he was supposed to grow out of and how we could facilitate its disappearance.

We began to realize after a little bit of wait and a whole lot of see, that, in fact, he wasn't growing out of IT at all.  We realized he was growing IN IT, but we still had no idea what IT was.

The answer hit me, just as unexpectedly as the pregnancy.  It came to me when Piggledy was away and I was doing homework. It came to me out of left field, even though IT had always remained quietly waiting in the dugout.  In the literature*.  On the internet.*  In the videos *.  In my textbook. * In a very small chapter in the back of the baby book—there was our little boy.  I remember feeling torn.  "If I utter this then IT will become true."  If I tell him then, he too, will have to have this same pulse-pounding, heart-wrenching, bittersweet realization.
With the heaviness of despair crushing the room I watched the weight of the facts, in black and white and in boxes checked off with my very own hands as the papers and his heart sank with the lowering of his hands. I remember seeing his heartbreak as it filled his eyes with quiet tears. We knew then what we could no longer deny.

I remember the look on everyone’s face as we did the unthinkable, that we put words to IT, the thing that only happens to everyone else and the look of skepticism and accusation in its wake.  “He is a baby, he’ll grow out of IT!  You are overthinking things!  You are being overprotective!  You should love him just the way he is, not criticize him.” 

But deep down….even if we wanted desperately for everyone else to be right…deep down, we knew that we could no longer deny IT.  Like a film in fast forward, subconscious moments  salient and disquieting that we, as parents had unconsciously tucked away for reference, flitted to the fore of our mind.   IT was both a devastating and relieving realization.

At first it hurt, hurt like death.  There’s that grieving process.  Admitting it.  I mean, not just to others; that is the easy part, but to ourselves, that this is REAL.  Accepting that the image that we created for our child, all the dreams, all our imaginings, all those moments that we looked forward to and had created, in our minds,  were all just figments of our imagination.  We had to accept that the reality was that at age two, we really had no idea of what his prognosis would be, and that it could very well be a much more grim reality that what would have ever conjured on our own.  We had to accept that the truth was that he would probably be bullied.  We had to accept that he might very well live with depression and loneliness and low self-esteem and that even though he spoke words, he may never be communicative. We had to swallow that “hot dog” didn't equate with “super-genius” and that there was a distinct possibility that our child would not even succeed in school, much less become valedictorian.  We had to come to terms with the notion that my child may never have friends, may never have a date for a prom or homecoming, may never find a meaningful, stable relationship, and my little baby may never have a job, live on his own, bear us grand-children....All those subconscious hopes and dreams that we have for our children…things we feel will bring them a happy, satisfying, fruitful, blessed life.  We had to be ready to realize that there was a serious possibility that the future we’d envisioned for him was just that:  our own conjuring and nothing like his destiny. 

At two, our little boy had a vocabulary that could rock the world.  But he could hardly call me Mom.  And he couldn’t tell me anything about himself.  He couldn’t say hi when he greeted me, wouldn't spontaneously wave bye.  Couldn’t say I love you.  Couldn’t ask for a cookie if he longed for the cookies I had.  He could beg with his eyes and hope that I would feel his desperation, but the words just weren't coming to him. Would I  never know my little boy, save for clues I must search his face for every day?  Would he never tell me about his day at school?  Would he never tell me about his own hopes and dreams and realizations???

Still relatively unruffled, his pediatrician had to be coaxed into  referring him for further testing.  He did say words right?

Shortly thereafter, our beautiful blue eyed baby boy was, in fact, diagnosed with Autism and immediately I began calling, emailing, banging on doors for answers to our many questions. What does this MEAN?  Not just Webster Mean, but MEAN in all seriousness of the word.  I used all of the knowledge I gleaned from being a human development major, pored over books, read websites, scholarly journals, connected with people, people who finally GOT IT, people who could help us figure out what IT is and how to deal with it.

In three weeks, E will turn three.  He can use a number of small phrases that are not simply echoed back to us.  He knows his alphabet, from A-Z, can count a few numbers withstanding, to 100.  Knows his colors, his shapes, a few sight words.  Possesses a killer vocabulary, ever growing with his curiosity.  He can ask for cookies, cake, his sippy and chicken.  In fact, he can bok like a chicken while asking for chicken, and can even help me cook it with a surprising ease for a three year old boy, despite that one year ago, his prognosis looked bleak and our hearts were heavy. 

He still prefers small groups and has only one best friend.  He still does “happy face,” a stimulation behavior that somehow calms him and he still runs in circles making weird noises.  He still needs a lot of attention, especially in learning, because his learning style is very different from neurotypical children.  He’s still not potty trained and his still can’t throw and catch a ball, and if you gave him the choice, he’d prefer a quiet day in his room with “Happy Frog”  and Thomas Train over a lavish birthday bash on Saturdays.  But he say’s “I love you.”  Not just parrots it.  He says it.  He MEANS it.  And a little less than a year ago, I wondered if we’d ever anything about who he is inside.

I realize now just how special our little boy is.  I realize, as the doors open for us to explore his perspective, that even though he may be different, that his way of thinking is beautiful just the same.  He has a wonderful, simple (not unintelligent, I say!) undiluted view of the world around him.  Pretenses are meaningless for him and the rules that socially bind us in so many ways are unbound and limitless in his "world."  He is truly free to be who he is, not hiding behind white lies and facades and implicit and explicit meanings.  And as we explore the world in his perception, so is he connecting and learning about our way of being.  He is a boy in two worlds, exploring a new and different world, bringing with him an intriguing way of thinking and refreshing wisdom with his slant.

IT may be a difference, but it’s not a disorder.  IT is an opportunity for us to learn new things.  To learn about new ways to parent, new ways to interact, new ways to perceive the world around us.  I realize that IT is a world that is not wrong or disordered, judged by our own shortsighted standards, but a world of its own with a lot for us to explore, a parallel world that welcomes us if we only take the chance to peek in.   I realize that IT is not at all a limit  but a new set of doors, an opportunity to teach people to see the world through other people’s eyes.

IT is amazing.

We love everything about you—everything—E.A.T.  I hope that this world will have the wisdom to  peek through YOUR doors, see YOUR world, traverse your feelings, and recognize the value of all people in your world and in ours, the way that you show us as you walk through our world.  I hope that IT opens doors for you the way that you have opened doors for us. It is my biggest parent hope and dream and wish  that you realize the beauty of all that you are.

*The real articles that I used/saw/perused.  

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