Thursday, April 21, 2016

Still Here

A time to sparkle 
I believe in natural cycles.  I believe there is a time to grow and a time to rest; a time for action and a time for reflection; a time for extremes and a time for moderation; a time for light and a time for dark.  This concept shows up all over our universe in different iterations.  In nature, there are seasons.  In philosophy, there is the ying and the yang.  In a lifetime, there is birth and there is death.  As someone who spent their youth surrounded by acres of land for which there was a time for planting and a time for harvesting, cycles are a given.   In all these cycles there are also constants.  Throughout every season, the sun appears.  Throughout every lifetime, no matter the duration, there is the thrubbing of a heart.  Throughout every planting and harvesting season, there is the rich earth which nurtures and releases its yield.  Whenever something changes, there is always something that is still there.  For every cycle there is a constant, and so it goes for parenting.

Autism has become our "normal."  We have fully embraced the idea that ordinary was no longer an option, and so we choose to live as extraordinary.  The accommodations and differences in our lives have become routine.  Every Monday is speech therapy, which means rush hour traffic to backtrack to pick up Sweet Girl before reversing to get to the appointment.  Every Wednesday, Sweet Girl and Little Man get hamburgers because occupational therapy requires nearly two hours in the car.  Scooters get scooted in the house.  Singing is an accepted form of communication; life is a musical here.  Shorts will be worn indoors even in the dead of winter.  Routines are set and followed.  So engrained are these extraordinary things, that they've become white noise - barely registering.  But they are important because they have allowed us to enter a cycle of comfort.  Sweet Girl and Little Man enjoy their time at home and feel comfortable in their surroundings.  They are generally happy and mostly self-sufficient while in the warm embrace of our abode.  Which is why I had nearly forgotten that in our familial cycles, autism is one of constants.

Last month, my dear husband and I were able to travel south to celebrate some great friends and their commitment to one another and their own family.  We drove to God's country and thrust our beautiful babies upon Nana, Papa, and Aunt Carrie.  Then we fled south of the border.  It was a lovely, lovely respite from the cycle of work and school.  We had a great time and returned to spend a quick Easter with family before heading home.  Sweet Girl and Little Man enjoyed their own respite from the school cycle so much that there were tears for two weeks upon our return.  "I miss Illinois!" became a common refrain, and this time it wasn't coming from me.  It's extraordinary that we were able to do this: take our kids to their grandparents' house and leave them for several days.  We are extraordinarily blessed that we have family caring and loving enough to care for Sweet Girl and Little Man while we vacationed alone.  However, it is possibly more extraordinary that Sweet Girl and Little Man can/do/want that to happen.  Autism is not great with change.  But I was barely registering that constant above the din of everyday noises until two nights before we started the adventure I just described.

I came home from school and Sweet Girl and Little Man went off to play "pool party" in the bathroom (sounds more exotic than "fill the sink and splash some plastic toys in it").  I started sorting laundry to pack and double-checking travel lists.  Then an offended and crying Little Man came in to my room to report that Sweet Girl had hit him.  Hit him?! This was unlike her.  She's very vocal, and prone to flight from situations of which she can not wrest control, but hitting is not usually on the radar.  I assuaged the indignant and righteously huffy Little Man and went to discuss the inappropriateness of her actions with Sweet Girl.  When asked about it, she related that she had wanted to win the game and when Little Man didn't let her, she took her hand slapped his hand.  "Well, even if you want to win it is not ok to hit people.  You need to apologize to your brother and take a time out in your room."  Before I could even get the terms of the time out explained, she was on the floor yelling "No!  I do NOT want a time out!" Her eyes wide and her body going rigid as it looked like she was struggling to maintain control of not just her emotions but every nerve ending in her body.  I explained that she needed to have a time out whether she wanted it or not, and that she has to think about what her actions might mean to someone else before she takes them.  What ensued was ugly and low.  There are no other words.  She was not in control, and if I know her at all, I am convinced she sought that out; she spurred her flailing emotions into a whirlwind frenzy that lasted a full thirty minutes of her yelling, crying, kicking the floor, hitting the door, refusing to calm herself.  Her reaction raged and tore against every ounce of patience and calm I had, until they were just abstract ideas to be utilized as a different person than the one I was as I held the door closed from the other side.  I tried everything I could think to try.  I raised my voice.  I whispered in quiet impotent rage.  I held fast.  I walked away.  All to no avail.  This tempest was hers and I was just scenery for contrast.  I had forgotten, but I was duly reminded: the challenges of autism are still here.

In my subsequent tears and reflection, reality presented itself.  One, background noise or not, autism is a constant and demands to be remembered from time to time.  Sweet Girl has made so much progress.  She has worked hard and been surrounded by great people who work hard to help her do so.  But sometimes.  Sometimes.  Sometimes, it's not enough to keep it together.  Two, the cycle of being comfortable had been upended.  Sweet Girl knew that she would be in a situation where she would not have control or the comfort of her favorite surroundings.  She knew that routine would be on hiatus.  She knew that, and she couldn't figure out what to do with the anxiety that gave her.  Feelings of uncertainty, questions about the many unknowns, dark colors, and swirling emotions came together, pulsed, expanded as each day brought the big trip closer.  There is not enough room inside of her yet to contain that, and so she released it.  In spectacular fashion, she let out all her worries, doubts, and concerns so that she would no longer have to hold that inside of her.  And I do not blame her.  I just wish I would have remembered.  If I had remembered, I would have been better prepared.  I would have reminded her that autism isn't the only constant here.  We also have love and support.  And tacos.  We will always have tacos, but what we can't handle through deliciously warm, gooey, crunchiness, we will tackle with stumbling and clumsy love.  We will weather the seasons of worry and doubt together until we find ourselves basking in the season of calm and tranquility.  Our constants remain.  There is a season for everything.  And through every bit of it, we're still here.