Thursday, September 20, 2012

Listen Close to Me

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
Anything can happen, child, Anything can be.

-Shel Silverstein

It is one year, six months, and nineteen days ago.  I have spent the preceding months in a blissful state of denial that anything is "wrong" with my baby boy, who is just shy of two years old.  Finally, enough voices have banded together to nudge us into taking him for an evaluation with a neurologist, and there we sat.  My denial buzz is fading quickly as the doctor strides in--brisk, efficient, and as I size her up, my heart sinks as I realize that I cannot pass this woman off as a quack.  She is confident, her eyes are sharp with intelligence, and within ten minutes, she has my baby pegged.

"He has how many words in his vocabulary now?" she asks, chart and pen at the ready.

"Um, two," I mumble.  Sort of.

Scribble scribble, goes the pen.

"And he's not pointing?"  

It's not really a question, but I protest anyway.

"Well, he's reaching for things..."

"No," she cuts in.  "He needs to point.  One finger.  At an object.  With eye contact."


Scribble scribble.

"Does he play with toys appropriately?"

"Mostly..."  I trail off, as I remember his "speech therapist" prodding him to play with a toy mailbox.  She is putting the mail and packages in the box, prompting him to play, again and again in my head, as C opens and closes the door.

Open, close.  Open, close.  Open, close.  

The doctor sees the lie in my eyes, and scribble, scribble goes the pen again.

When we are finished, her words are kind, but firm.  There is no room for denial in our lives anymore.  We do not get that luxury. 

She hands us a diagnosis sheet, and explains that he will need help.  

Aggressive help.  


Even with the right tools, the right people, the right therapy, he will be behind, she says.  He will enter school a year late.  

At least.

I stare down at the diagnosis sheet, numb.  

Just twenty-four hours ago, he "just" had a speech delay.  Now he has autism.  How did we get here?


It's a week later, and we are interviewing at a local therapy center.  The preceding days have been a blur of frantic Google searches and phone calls to anyone and everyone we could think of with an autism connection.  Anyone who might have answers.  Any answers.

Time is precious, the doctor had admonished, and we were desperate to take advantage of every second--so there we were, taking the first available appointment for an evaluation at this place I never thought we'd be.

I had pictured him in school, I had pictured him in sports uniforms, I had pictured him in a cap and gown, but I had never pictured my baby in therapy.

Funny, that.

I watch as he identifies letters and numbers on blocks, a skill we are so proud of.  

See? whispers my remaining doubt.  See how smart he is?

My mother's eyes see the knowledge, but miss the significance of the intelligence, the focus.  They miss so much else.  His gaze is cast down as he names his inanimate friends, and he is difficult to pull away from them.  Other toys are presented, but he shows only cursory interest, always going back to the letters.

Scratch, scratch goes another pen, on another chart.

Other evaluations are performed, other gentle questions asked, but by the end of our session, I have developed an irrational hatred for pens.


It is a few weeks even later, and insurance papers have been signed (with more pens), schedules arranged, and prayers are winging their way toward heaven at a frantic rate.  He starts his first week in therapy, and I am trying to convince myself he just needs a little boost, that's all.  He'll be fine.

He is fine.

Then a video comes home, demonstrating something-or-other that we needed to work on with him too.  I don't remember the skill, am not really sure I ever knew, because all I could see was my baby, sitting at a table, developing an enmity for a toy hammer.  

The therapist is hammering, hammering with the toy, then places it down in front of him.

"Your turn," she prompts gently, encouragingly.

Chunk goes the hammer, over his tiny shoulder.

Hammer, hammer, hammer, again.

"Your turn.  You do it, C."

Chunk, sails the hammer.

He is whining, confused, and as I watch, I realize with shock that he does not know what to do.  The toy's purpose is lost on him, and in his bewildered state, he is removing the object that is causing the frustration.   

In the weeks afterward, other objects follow the hammer's trajectory.  

Legos.  Dolls.  A mostly-fully soda can, in one memorable instance.

But one day, whether the light had finally dawned, or he just got tired of his therapists stalking him with hammers, he picked up the toy and hammered.


It is a year from the day we last sat in the neurologist's office.  C is a different child now than he was a year before, in some ways good, others not so much.  He is anxious in the waiting room, and I worry and fret that she will not see what we see in him.  

The progress.  The change.  The happy baby that has been inching his way back out, slaying the hearts of therapists and relatives alike.

I have come bearing progress charts, though, and her brows wing skyward as she reviews them.

"Keep it up," she prescribes.  "Don't change a thing."

The same doctor who pronounced that he needed help--now--was this time suggesting that C could "grow out" of his diagnosis.

We left her office happy, but slightly bewildered.  Was there such a thing as a recovering autistic?


It is one year, six months, and nineteen days since C received his autism diagnosis.  He is happier than any child I have ever known, and frighteningly intelligent.  His progress is amazing, and his newest "skill" is talking back.

"No," he insists nightly.  "I not gonna go to bed."

It is music to our ears, but I am careful to smile only as I turn away, after giving him my stern face.

Today, he is a newly minted preschooler, slaying the hearts of teachers and aids alike.

And today, he begins his first steps out on his own.  

His all-but-final evaluation is complete, and the consensus is that he has the tools he needs, now.  We have spent the last year, six months, and nineteen days developing them, shaping them, pushing him to use them.

All that's left now is to put them into practice. 

His most effective teachers now will be his peers.  There will be no following him around with pens.

Well, at least not more than once per month.  He's not totally being flung out into the blue.

So in a little over a week, we go cold turkey.  All Pre-K, all the time.  No more clinic.

My emotions are mixed.  I am so very, very proud of this kid.  He has worked so hard, and his therapists have worked even harder, to get him where he is today.  

I am sad, though, to say goodbye to our safe, cozy little bubble.  We have learned much there, and made some amazing relationships and connections.  We all are different people now than when we first passed through those clinic doors.  

Autism has shaped us, in a way we never expected.  For all the time I spent adjusting to seeing him in therapy, now I can't imagine him out.

I wonder if I'll ever have an answer for the parent that once asked me, fresh from diagnosis and understandably terrified, "Do you think it can be cured?"

One year, six months, and nineteen days' worth of therapy later, I don't know how to answer that.  There are those that would pronounce my child cured, I am sure.  The word makes me uncomfortable, though, because it seems to negate who he is.  The child he has fought to be, the struggles he has determined to overcome.

I like to think that he and his team have spent the last one year, six months, and nineteen days shaping his autistic-ness into strengths that he can be proud of, and mitigating the struggles that came along for the ride.

He is autistic.  He will always be.

But that fact doesn't deserve my terror anymore.

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