"I'm Free"

Another summer has come and gone.  Holden and Zane are both back in school today.  Summer is a time of choices for parents.  How much do we make our children work? How much do we allow them to play? What will their bedtimes be?  etc…. When you have a child on the spectrum, summer presents a whole different challenge.  First of all no two kids are alike, and that is so true of autistic children as well.  There is a saying in the ASD (Autism Spectrum Disorder) community: “If you’ve met one child with autism, then you have met one child with autism.”  So I don’t want to generalize here, but at the same time, there are certainly certain characteristics that not only represent ASD, but actually are used to diagnose ASD.  One of them is a strong need for structure, and the other is an inflexibility to change and transition.  These are very common traits among ASD people.  So summer presents quite a challenge for parents of kids on the Spectrum.  Lets face it ALL kids like structure, but the fallout isn’t quite as bad with neurotypical kids.  It becomes the parents or caregivers job to try and fill in the gap of that structure.  Holden went from having school everyday from 8:15am till 2:50pm and then “in home therapy” from 3:30pm till 5:15pm.  So a huge chunk of his day was structure.  As I previously stated, the first week of summer, Holden’s therapist was out with an injury, so he went to NOTHING!!!!!!!  I tried to fill the gap as much as possible, but Holden didn’t do well at all.  That was such a huge change.  When summer school started it helped a little, then his therapist came back towards the end of summer school.  However, by that time, damage had been done.  He had backslid a whole lot.  There is always a backslide at the beginning of summer, then we work our butts off, get in a great rhythm, really start making progress, then the summer ends, and there is another backslide at the beginning of the school year.  If you think this is frustrating, you are right.  We reach all time lows in the summer, and work our way out of this deep back slide (this years exacerbated by previously mentioned incidents) claw our way back to some slight resemblance of where we were, and then we climb forward.  This isn’t like climbing a ladder, or walking up a hill, this is Everest! This is ice boots, ropes, a pick, and progress of a few inches an hour, in air with no oxygen in it.  But we bunker down, we tie on our safety ropes, we harden ourselves to the climate, and we celebrate each inch we make of progress.  All the while knowing we are going to slide down half or more of this insane climb we are making.  Yet this is the gig.  This is what we do.  This is how we help our children through the summer.  

Personally every year I dread it.  I feel bad for all that have to witness it.  Zane has had to witness every single one of Holden’s summers, and I feel bad that he has too.  There are tools I use to help cope.  I journal everyday, I go for jogs, read, write, play music, all while Holden is asleep.  When he is awake… I attend him… Non stop… All day long!  You can’t relax around Holden, the minute you do, he is lighting something on fire, running out the front door, trying to grab a knife, throwing his iPad across the room, trying to punch a window our, flinging my personal belongings across the room, tearing down curtains, pulling on the dogs ears, eating his boogers, playing with his saliva, walking on the edge of the trampoline, outside the net, pouring dirt on his head, biting, kicking and pinching me… well you get the idea :).  

So when school starts, like today, we feel like we are Atlas, and somebody just took the world off of our shoulders.  Like we can breathe for a second, like we can relax for a second, like we can actually go to the bathroom and not be on high alert.  Take a long shower.  I could tell you some pretty harsh stories about our summer, but that isn’t what it’s about.  Those moments are a byproduct of a bigger picture.  What is really important, is that we made it through another summer, in which we made it past the back slide, and made progress.  We can look back and see every inch we climbed, and know that we came out above our starting point at the beginning of summer.  I know there will be a backslide over the next few weeks, but that backslide will slide down to a point higher than the end of last school year.  The work never ends, and sometimes it feels like one step up and two steps back, but we are making progress damn it!  We all have the scars from this great climb, but they were all worth it in the end.  So for now, as the kids are in school… “I’m Free” “And Freedom Tastes of Reality”.