Vulnerability

I haven’t always been vulnerable.  Autism made me this way but it’s not a complaint, just a fact.

We are a week into summer and Jack told me yesterday he was bored.  Well, he typed he was bored.  Since November 7, 2012, our world has been turned upside down when our otherwise “silent son” spelled out on a stencil board “I am trying” and  “I am really smart.”

Jack has progressed to typing on an iPad and we can have some pretty productive conversations some days.  It’s not, however, all rainbows and flowers now that Jack can type.  He still has autism.  And, quite frankly, it affects him tremendously.  It sucks.

He does type he wants “to learn” on a regular basis.   I appreciate his eagerness to learn but when he typed he was “bored” I decided we needed an adventure.   Adventures in “autism-land” require a lot of patience and time.  I need to be mentally ready for the stares (we attract a lot of attention just with a service dog. But, add in headphones and a kid that weighs 115lbs who still holds moms hand?   People stare.)  And, there is always the potential for aggressions.  This is just a part of Jack’s autism and it ebbs and flows depending on a long list of items that may or may not be present.  But, I need to be ready to have Jack’s impulsivity take over just when you think everything is going smoothly.

He likes history and battles so I thought a trip to the Gettysburg Battlefields, only an hour away, was perfect.  I enlisted the help of his amazing sisters.  They were dead to the world in a teenage slumber when I happily announced,  “We are going on an adventure!”  Kudos to them…they came with little to no complaining.   I was pumped.  “I can do this!!”

I was immensely proud of how the girls handled the stares and mumblings from bystanders.  The “special” attention we get is a bonus from my perspective  –preferred seating, fast service and, going to the FRONT of most long lines.  However, for my teenage daughters, it just makes us stand out even more.

Our afternoon is going along swimmingly when just like that…it starts.   The aggressions.  Hair pulling, pinching, grabbing and screaming.  Imagine the scene.  IT doesn’t look right to have a kid pulling his mother’s hair.  It doesn’t look right to have a kid grabbing his sister’s face while we quietly try to pry his hands off her.  It doesn’t look right to have big boy having a tantrum of a 4 year old.  Here in lies the vulnerability.  To be in public, I have to admit we are a different family.  We are louder than most and sometimes, our behaviors make people really stare- with crazed eyes and mouths agape.

Today, however, I am congratulating myself for doing it. Our day ended a bit earlier than I predicted but, I put us out there and we all handled it like champs.   Autism might suck some days but my family ROCKS.

7 comments… add one

  • Tish Halle June 20, 2013, 11:26 pm

    And the Halle’s think you guys ROCK too! Love the blog!

    Reply
  • Robyn June 21, 2013, 9:13 am

    Your family does rock, but you’re the biggest rock star.

    Reply
  • Libby June 21, 2013, 9:46 am

    Nothing ventured, nothing gained. You gain on a daily basis.

    Reply
  • Gina June 21, 2013, 10:09 am

    Way to go Amy!!! I think your family rocks too!

    Reply
  • Tracy June 21, 2013, 12:39 pm

    I totally agree…you and your family ROCKS!! XOXO

    Reply
  • Lori June 25, 2013, 11:39 am

    So happy that you ventured on the adventure! You’re amazing!

    Reply
  • Laurie Moore January 10, 2014, 3:06 pm

    Don’t feel bad and def don’t worry about what other people think. Chase, whom you met in Syracuse last summer, is 263 lbs 5’11 and 23 years old walks hand in hand with my husband who’s 6’2 225 pounds!! Just this am a passerby smiled and said they looked like twins!! Don’t let people judge who haven’t walked in your shoes!!

    Reply
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