[acb-hsp] On Asperger's and Broken Hearts

[peter altschul]

On Asperger Syndrome and Broken Hearts
  by Christian Piatt 02-01-2012 bar 12:27pm
  Our son, Mattias, is eight years old.  Everyone thinks their 
kid is special, and in a lot of ways, he's just a regular kid.  
He loves fart jokes, enjoys riding his scooter and is obsessed 
with video games.  But we've known he was different from a very 
early age.
  Mattias started reading almost as soon as he began to talk.  By 
age four, he could name any musical pitch or chord structure by 
name that he heard.  He memorized his books after only hearing 
them a couple of times.  He also struggled to make friends, still 
has frequent bathroom accidents four years later, and he has 
meltdowns when things don't go his way that would rival Bobby 
Knight's chair-throwing basketball tirades.
  But now, he's finally starting to realize he's different.  A 
couple of nights ago, he got particularly frustrated about the 
order in which we tried to get him to do something.  I don't even 
remember what it was about, though I'm sure he could tell you in 
excruciating detail.  He quickly found the end of his fuse, 
turned bright red and started hitting himself aggressively in the 
side of the head.
  "Why am I so different?" he wailed, continuing to whack 
himself.  "Why am I not like everybody else?"
  After we got him calmed down, my wife, Amy, had "the talk." we 
had anticipated was coming for some time.  No, not the one about 
sex; he seems to be pretty matter-of-fact about all of that.  
This was the "different talk."
  "You know how there are some things you can do that none of 
your friends can do?"
  "I guess."
  "And you know how you sometimes have a hard time making 
friends?"
  "But mom," he grumbled, "it's because when I try do tell them 
how to do something right"...
  "I know honey," she patted him gently on the back.  "You have 
something called Asperger Syndrome.  It makes you a little bit 
different, but it also helps you do some really amazing things 
that even dad and I can't do."
  She made a point of offering the news in a way that had as many 
upsides as downsides, but of course there's no telling how a kid 
like Mattias will take this kind of revelation.  We braced for 
another meltdown, but thankfully it never came.  In fact, he was 
pretty excited about it.
  "Right on," he smiled, "I have a syndrome!" he looked curiously 
at Amy.  "Mom, what's a syndrome?"
  And thus the new obsession was born.  He spent the next few 
hours drilling us on all things Asperger's, and endeavored to 
read whatever he could pull up on Google about his newfound 
difference.
  In all, it went as well as could have possibly been expected.  
But that doesn't mean the day-to-day of raising a kid with 
Asperger Syndrome is any easier.
  Sometimes it's easy to fall into a well of self-pity, bemoaning 
the fact that he requires extra therapy, counseling and parental 
vigilance that some other kids don't need.  I mean, we didn't do 
anything to deserve this, right?
  We got a call from Dave and Lyndsay, whose family belongs to 
our church, after their Sonogram for their expected third baby.  
With emotion spilling through the phone, they explained that 
little Avery was developing with only half of a functioning 
heart.  The entire left ventricle wasn't moving at all, and they 
had already passed the window for possible in-utero heart 
surgery.
  They had three options: abort the baby, let him be born and 
take him home to let him die naturally, or accept the fact that 
he'd have at least three open-heart surgeries in the first years 
of his life, followed by a full transplant as he grew.  And aside 
from all of that, there was no guarantee what limitations he 
would be able to overcome, or even how long he would live.
  Instead of withdrawing into themselves, drowning in the 
darkness that I can only imagine they felt surrounding them, they 
decided to share their story.  On Sunday mornings at Milagro (our 
church) someone always stands up and offers a show-and-tell 
moment, where they offer an item that helps them see God.  Dave 
and Lyndsay brought an image of little Avery in the womb.  Though 
no larger than the size of a manbs clenched fist, it seemed as 
clear as the days of the week that his hand was folded in the 
shape of the sign-language phrase, "I Love Y."
  "Instead of asking ourselves, `What did we do to deserve th"`"b 
said Dave, "we decided to ask ourselves what exactly we were 
going to do to deserve this special little life that is going to 
soon become a part of our family."
  Man, did I feel like an asshole.  Though the struggle of others 
hardly makes me feel any better, it certainly serves to put my 
own hardships into perspective.  Tears were shared by many, as 
were prayers, hugs and stories offered by other parents about 
losing children, grandchildren, having a baby born with special 
needs, and even a few stories of inexplicable, miraculous hope.
  Now we all bear a little bit of the weight they were carrying.  
It doesn't change anything about Avery's condition, but together, 
I do believe we are stronger.  And in so much as our strength 
helps Dave and Lyndsay face their own challenges, maybe it could 
even change the course of Avery's entire life.  That is church at 
its best.
  Mattias will be all right.  Yes, he can be infuriating to 
parent sometimes, but he's inexhaustibly healthy, thank God.  He 
crawled up on my lap a couple of evenings ago, and as he watched 
TV, I pressed my ear against his chest.  With every heartbeat, I 
offered a silent word of thanks.
  Christian Piatt is the creator and editor of BANNED QUESTIONS 
ABOUT THE BIBLE and BANNED QUESTIONS ABOUT JESUS.  He co-created 
and co-edits the bWTF: Wherebs the Faith"b young adult series 
with Chalice Press, and he has a memoir on faith, family and 
parenting being published in early 2012 called PREGMANCY: A Dad, 
a Little Dude and a Due Date.