Wednesday, May 7, 2014

The Diagnosis- One Year Later

Life is made up of moments.   Tiny moments that define us.  Some moments are so small that they barely cause a ripple in the river of our experiences.  Other moments cause that river to bend ever so slightly, altering our course.  Then, there are those jarring moments that veer us in an entirely new direction, taking us to a place that we never could have imagined.  These are the moments that define us.  Such a moment came for me as I sat in a chair much too small for me, in a tiny room meant for four year olds, when the clinician looked me in the eyes and said, "Have you considered that your son may have autism?"

The truth is, I had considered it.  As an educator, I know the signs.   In fact, looking back, all of the signs were there.   Very little eye contact.  Limited interests.  Absorbed in his own world filled with cars, trains, and basically anything with wheels.  I noticed how as a tiny baby, he would scream so hard that he earned the nickname "Red Ben", and I watched as he screwed his little eyes shut as if to block out the world that was just too much to take in.  A little voice inside my head whispered to me when my son never pointed to the pictures of the stories I read to him every night.  In fact, he never pointed at anything, never reached to be picked up, never knew how to hug, never said "I love you".  And the voice would whisper in my ear, "Not normal, not normal..."  But then, I would doubt.  I would remind myself that every child develops on their own timetable.  I'd convince myself that I'd wait and ask about it at the next doctor's visit.  I would watch and worry.  But no one else around me seemed concerned so I would shove my worries aside and absorb myself in my day-to-day life.

And then one day, I knew for certain that something was different about my boy.  It was Mother's Day, the year that he was three.  The teachers at his wonderful preschool made a video for parents, complete with a short clip of each child in the class singing a special song to their moms.  Each child was featured singing the song before flashing to the next cute little face.  I know that it's unfair to compare one child to the next.  I know every child is different.  But, I watched with gut-wrenching pain as each voice sang out sweetly and clearly, "I love my mommy, yes indeed.  She's so very good to me..."  And then, my beautiful baby boy's face flashed on the screen.  The tape clearly stopped and started several times as the teacher tried to get the best "take" possible.  I watched with a lump in my throat as my son gurgled an intelligible string of sounds.  After the third time watching the clip, I deciphered the word "mommy".  The final scene showed the whole class standing in a straight line, singing in a tiny chorus.  As the camera panned across the class, all the children stood tall and proud, their tiny mouths moving in unison to the words.  The camera quickly skimmed over my boy, swaying in the sidelines, hands shaking to his own rhythm, head bobbing uncontrollably.  And then, in a moment of clarity, I knew.  I didn't need to have an expert confirm what my heart now knew for certain.  My son was autistic.

A few days later, I arrived early to pick my son up from school.  I noticed the class playing outside on the playground.  I sat in my car and watched the children in his class happily running and chasing each other around the green grass, climbing the stairs and running in and out of the tunnels on the playground equipment.  It took me a moment but finally I spotted my boy wandering the outer perimeter of the fence, walking slowly, head down, and alone.  When I later related this story to the evaluator, I explained that I had thought that Ben preferred to play on his own because he is an only child.  "Actually," she explained, "Only children usually seek out children more than those who have siblings.  They crave company.  The fact that an only child prefers to be alone is highly unusual."  And, here I thought my son was a genius because he could play for hours by himself, intensely focused on building intricate train sets.  We had even nicknamed him "The Trackmaster".

So, after months of evaluations, checklists, observations, and assessments, Ben finally received the diagnosis of ASD (autism spectrum disorder), along with the classification of speech and language impaired.  Occupational therapy followed soon after as a related service.  As I sat in the meeting with the room full of professionals, it suddenly became very real.  For years, I had sat on the other side of the table at meetings such as this as the content area expert.  I would interpret literacy assessments and prescribe interventions for other people's children.  Suddenly, listening to my son being described in such clinical terms, I got a bitter taste of reality.  I realized how these words were not even coming close to capturing the essence of Ben.  I realized that these numbers, these ranges of "below average" and "clinically significant" results were not getting at the heart of the matter.  And I realized that it didn't matter because I knew my son best, and, for the moment, that was enough.

When the evaluator asked how I was feeling at the end of the meeting, my answer was simply this.  Ben is still Ben, no matter what label he receives.  My son has not changed from the son who I have always known and loved.  What matters now, going forward, is making sure that my husband and I surround him with all the supports that we can to make sure that he reaches his full potential.  This year I began the journey towards achieving this goal.  I began the journey believing that his autism would be a "temporary thing".  I now know that autism is a part of who he is, and I've learned that it's okay.  I fully believe that when my son grows up, his unique learning style will be an asset to this world.  I am not going to limit my son by assuming what he cannot do, and I am not going to allow others to limit him either.  Every day, Ben shows me that he is capable of exceeding any expectations that we may set for him, so I plan to never set the bar too low.

On the day one year ago when Ben received his official diagnosis, the evaluator told me something I will never forget.  She said that, as an educator and a mom with a child on the spectrum, I am in a very unique position to be an advocate, not just for my son, but for all of the children like him.  Because, you see, now it's personal.  My eyes have been opened to a whole world that I knew existed but I never really saw before.  I have a mission, and that mission is to help others begin to understand this huge thing that we call autism.  We fear what we do not understand, and I have learned that we cannot fear this.  We cannot hold these children at arm's length because these children are our future.   Each child has a unique story to tell.  This is the beginning of our story.

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