Friday, 28 February 2014

The Fabric of An Autism Family- Quite the Intricate Weave

The other day, I was talking to John about taking the kids somewhere.  Let me rephrase that.  I brought the idea of taking the kids somewhere to John’s attention and didn't need to wait for an answer.  Just a minor shift of facial expression is all it takes anymore.  I can read what my husband is thinking and feeling via maybe 2 words of a text, by looking at his face, by the tone with which he says hello, by how long it takes him to come into the house when he gets home at night, by how many times he hits the snooze button in the morning, and most importantly by the way he looks at me. 

This does not happen overnight in any relationship.  It is a dance and ours is still in the choreography phase as we speak.  I guess that could be said for everyone right?  BUT, we have a dance, we are good at it, and we are fine tuning our steps daily. 

I want to talk about how this “dance” is affected by having children with autism.  When our boys were first diagnosed (within 6 months of each other), all we could ever see in each other’s eyes was distress, fear, anger, sadness.  It felt like our relationship was freeze framed in this way.  How can you read your partner when they are continuously grieving?  The pain was all I could see in his eyes and I am sure the same was reflected in mine.  During this time, there was really no way to move forward in our marriage.  We had to deal with an issue so huge, so life changing that we were literally paralyzed emotionally.  We were both so vulnerable and yet closed off from each other.  I say this not to evoke sympathy, or even to explain OUR lives, but to inform those who may have relatives going through something like this now.  You cannot get an accurate picture of a relationship as a whole when two people are devastated, when they have been through something that can most accurately be described as trauma.  

But this is not the point either.

The point is our communication now.  How our dance has changed over the past several years.  If other couples learn to communicate in the ways I mentioned above, couples with special needs children are all but telepathic in their communication.  In an instant, if we look at each other and see a certain glint in each other’s eyes, we will grab our kids and haul ass out of a store, restaurant, museum etc.  We have a whole new set of communication techniques now.  Before, if one of our children was melting down, we were both frozen, because it was traumatic for us.  I mean, who reacts appropriately the first time their kid starts banging their head on the floor in a restaurant?  If you think you would, listen closely, did you hear it?  Golf clap.  Because it’s bullshit.  It’s a learning curve, one in addition to the one that comes with parenting.  And for us, you can throw into the mix that we have two boys on the spectrum and completely different things set each of our children off.  It makes it all but impossible for all of us to go anywhere.

John, poor guy, resists family outings with everything he has.  So last weekend, I convinced him on a 60 degree day to go to Chick Fil A then the park to play.  Seriously we were sitting in Chick Fil A for less than 10 minutes when Nathan started gagging- with what may have been a relapse of his stomach flu or a reaction to one of his medications (sorry Jo :-) ). I didn't want to look John in the eye, I knew I wouldn't like what I was going to see.   And it wouldn't  have even been “time to go”.  It would have been “aha, now you remember why I don’t like to go out with both kids at once, and why we always go through the drive thru.  Now you remember that it NEVER ends well.  Now you remember why I offer to stay home with a kid pretty much every weekend while you take the other one out alone.”  One look.  Dude, I kept my eyes to the ground, lol.  

Without looking we both knew it was time to run anyway.  But no one got upset.  Just another day.  I am trying to figure out how to phrase my point.  I guess I am trying to say that there are many learning curves in life.  There is a continuous one in a marriage or committed relationship.  And another continuous one that comes with being a parent.  And then there is (what feels like) the Mount Everest of being a parent to two children with  autism.  It doesn’t matter how in shape you may think you are at the beginning of the climb, you’re gonna suck at it, I can guarantee it.  At least in the beginning.  All of the rules others have taught you, or that you have learned along the way go out the window.  For me and John, there is often no time to talk, to communicate about our kids’ behavior or needs.  We need to be able to grab them and run- together.  We need to be able to say no to negative situations, together; often without having time to consult with each other.  We need to be able to poke each other in the middle of the night for the rest of our lives and have faith that we will help each other, even if it means cleaning poop off the walls- again.  When I call John at work to tell him that when I told Nate to “touch bird” in a book he touched both of them instead of just one, John needs to know that he should freak out and be excited- for the rest of his life.  Even if it’s the only progress I ever report ever again.  Because we are an autism family, and every single step matters, even if it’s more like climbing a stairmaster (getting nowhere) most days. 

We are learning this new dance, over time.  All autism families are.  But I’m not going to lie to you, it quite often sucks.  We are in a completely different ballroom from typical families.  The music is quieter so as not to hurt our children's ears, the lights are dimmed so that they aren't too stimulating.  And we really have to watch the tempo or we may totally mess with one of our kids' vestibular systems.  Did we understand all of these little innuendo's several years ago?  Of course not!  We thought the disco would be just fine, that the strobe lights wouldn't cause issues, that the crowds would be fun.  Now we know better.  Our familial relationships have to adjust to suit these needs yes, but more importantly, we have had to learn a whole new marital dance.  The good news is that even if your partner is stomping all over your feet and dropping you at the beginning of the journey, if you just hold on, you WILL get the hang of it.

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