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

[Baracco, Andrew W]

I understand that Asperger's, as a distinct diagnosis, will be dropped
in the next revision of the DSM.
Andy


-----Original Message-----
From: acb-hsp-bounces at acb.org [mailto:acb-hsp-bounces at acb.org] On Behalf
Of peter altschul
Sent: Friday, February 03, 2012 7:13 AM
To: Acbhsp
Subject: [acb-hsp] On Asperger's and Broken Hearts

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.
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