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You have to live it to get it

For the past two weeks I have been living in Florida while my family marinates back in Illinois for a bit longer.  The next few months are going to be a challenge for me—the one who feels lost and adrift with no discernible role in life; for my husband—the one who has now undertaken ALL the roles in life; for my daughter—the one who has gone from a carefree teenager to a governess; for my youngest son—the one who’s always been a daddy’s boy and thinks the next few months are like one big campout; and for Ewan—the one who’s rock has just floated down the river towards an island in Florida.  I can assure you I am not the only one left adrift in the tide that just swept through this family. 


Surprisingly though, the first two weeks haven’t been a total disaster.  In fact, with the exception of a few little bumps in the road, it’s going quite well for my Illinois half.  And for me, well, I’m in the process of remembering who I was before marriage and before children—the ‘just me’ that hasn’t had to change a diaper, shuttle sick children from doctor to doctor, pick up toys, find a therapist, take a child to a therapist, or even be the therapist.  The ‘just me’ that seems to have enlisted an autopilot self-protection mechanism from feeling totally lost and overwhelmed without my other self.  The self that has thought about autism in every which way possible, the self that has continually searched for that missing piece that would help me understand just a little bit more about what our children are thinking and needing, the self that constantly pushes the boundaries of possibility for what it means to be autistic, the self that challenges everyone else to open their minds and hearts to allow room for the child with autism in the community. 


But that’s not me right now.  ‘Just me’ doesn’t really know the autism community in Florida yet.  This ‘just me’ is on the outside looking in.  The ‘just me’ who is now working behind the scenes rather than up close and personal with families and children.  The ‘just me’ who doesn’t even have a chance to hear the ‘isms’ spring forth from the most philosophical children to walk the planet.  This me feels like a planet spinning out of control, lost and disoriented because the gravity of autism no longer holds me in my place. 


Because you have to live it to get it. 


You have to live it to get it because being in the trenches 24 / 7 is not the same as working with the autistic child.  Being an ‘Autie Mom’ is not the same as being the best therapist in the world.  Autie Moms and Dads don’t get breaks, vacations, holidays, or sick leave.  Autie Moms and Dads don’t have the luxury of choosing what they want to deal with or passing on responsibilities to the next shift—all the needs and wants and emergencies hit you with the force of a runaway train.  Because at the end of the day we don’t get to clock out—some of our days keep going well into the wee hours of the next morning.  The Autie Parent is more like a four star general running a two front war—with squadrons covering sensory input, patrols looking for potential meltdown triggers in the area, whole divisions dedicated to communication issues, social demands, and behavioral programs, with units posted at school, at the clinic and in the backyard waiting to pounce on the slightest unrest. 



But that’s not me right now, this me is several states away from the action and operations base.  This me merely gets the abbreviated public affairs version of the days events.  This me is on leave--my passport to Holland has been temporarily revoked and I already feel out of the loop.  My perspective is skewed—my four star general status has been changed to a private and it feels like starting over in what I thought I knew about the autism life.  And I can already tell it’s going to take awhile to get acclimated once again when the troops relocate to the new base and I’m the new guy just trying to fit in.



Because you have to live it to get it.