Saturday, April 8, 2017

My Gifted Tin Man

I can still hear the thumping of my heart and see the room kinda whiten and slow down strobe style as the words came out of her mouth.  "P-D-D N-O-S" she'd said then. (She wouldn't now).  

My little one, my perfect little 1 year old boy who had started talking at 8 months, who would entertain us with his depiction of the Tin Man's dance routine from the Wizard of Oz, who had become everything to me... Was being boxed by this psychiatrist who was crushing our souls with these letters.  His stacking of the toys was apparently an indication.  His banging of a bottle against the floor.

She didn't care that he was breastfed.  She "knew" how we were taking it and assured us that there are "programs" for children "on the autism spectrum" and that many grow up to lead very regular "almost normal" lives.  

But she didn't know how much this child meant.  She didn't know that he hadn't just been made - he'd been designed by not even two but three!  She didn't know that so many of my friends had seen his charisma and intelligence already that they based their own kids' progress on how those kids measured up to mine.

But here I was facing a nightmare I'd only ever scarcely entertained a notion of.  That morning (as every morning for the past year and a half had been) had been perfect.  The redemption (it felt like) of a less-than-happy childhood of my own.  All that hope was gone now in the time it took for a stranger to sum up my child and mouth the letters P-D-D... my heart stopped.  Everything felt gone.

   It wasn't though.  

   Amy and I were no strangers to autism.  Amy was already a special education teacher in a District 75 12:1:1 classroom, and I had subbed at a school with her for a time before college.  I'd also taught at a day habilitation for adults.  I knew what autism looked like.  I was a teacher and I knew.

(I didn't really.)

   But I learned!

I watched in awe of my wife as she tailored 5Xs 30 Speech,  3Xs 30 OT, 3Xs 30 PT on top of 30 hours a week ABA.  Letters and numbers entirely new acronyms bounced off the walls of my mind all the time without my comprehending any of them.  Before he was 2 my boy worked more hours a day than I did!  We were bombarded with strangers in our house who became our new best friends.  We pushed away all old as we learned they were all too happy to go.  At first (meaning days after his diagnosis) he got worse.  Suddenly he was stimming!  Maybe it was only just then that we noticed?  We couldn't get him to sit still for a picture.  We realized we hadn't in a really long time.  And we were hyper aware of this new thing (to me) called "joint attention" he so blatantly lacked.  I went back to school and got my sped license.  

I would love to make this long story short.  But it was years of a kind of agonizing tension on all our routines, our values, our relationship (80% fail under this stress), our hopes, dreams and quite honestly and in many different ways, our very souls.  

But things got better.  I learned that autism is a spectrum.  I learned how much we are all only just learning.  I learned that autism can be a kind of trajectory.  A child doesn't make eye contact easily.  That child misses social cues.  Others misinterpret and avoid the child.  This in turn hurts the child's opportunities to learn from those others.  Early Intervention teachers then swoop in and supplement as much as they possibly can while the child goes through this.  They work together as a team to help the child, teach the parents, and indeed help the parents teach the child.  I felt like I was being cared for by angels when I hadn't the strength to even care for myself, let alone my boy, my broken hearted wife, or our newborn.

   In time, he caught up.  He got into a NEST program at school.  He fought through the despair of realizing he wasn't like everybody else.  He learned to sort through his emotions and behaviors.  He reads and writes on grade level.  He performs in talent shows.  With certain supports, he makes friends.  Those supports are less and less as he matures.  

   The other day I received news that he and his little brother made the Gifted and Talented program.  Both scored over 90% on a test administered to the best and the brightest.  And next month he plays the Tin Man in his second play, a part he's been mentally practicing for years.  It won't be hard for him however.  This guy knows how to act like he doesn't have what he needs inside.  But he does!  He's awesome and has always been a born entertainer.

   Never lose heart.  


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