7. Come Eat Dinner

The point of this blog was to share and document my experiences and challenges raising a child with Autism Spectrum Disorder.  But while I do most of the hands-on work because I am a SAHM, I am not alone, which is why I wanted to do a post about my husband and his and my relationship post-ASD-diagnosis.

Stormtrooper asked me if he was going to be the comic relief of this blog, and while he does often say really funny things, it's not all fun and games.  Actually, when it comes to the two of us dealing with things ASD-related, it can be very tense and angry.  At least, it was for a while.

I met my husband almost a decade ago when I waitressed at a bar.  He worked at Harley Davidson and rode motorcycles.  He had his ears pierced and his tongue pierced.  Such a bad boy.  Little did I know, he was secretly watching Star Trek reruns in his bedroom.  What a dork!  Now there are no piercings, no motorcycles, but at least the tattoos are still there, a small reminder of the past.

He asked me to marry him while I was half-asleep (probably so that I was too out of it to say no, ha!)  And then about thirty seconds later, I was fully awake once I realized what had just happened.  We eloped, because I had zero desire to have a "real" wedding.  Our day was perfect and lovely and I wouldn't change it for the world.

It seems like a good story now that I write it down, and it is, but not every step of the way has been easy.  My husband is very laid-back, which can be a fantastic quality, but when your mind is so used to going-with-the-flow, it can be very frustrating to deal with someone who cannot go with the flow.

Stormtrooper would say, "Come eat dinner."  Three simple words that would create a not-simple response.  Come Eat Dinner implies drop what you're doing and come into the kitchen now.  J wouldn't want to drop what he was doing.  He'd have to reach what he says is a "stopping point."  Whether it's in a book, drawing, or game, he has to reach a mental or emotional stopping point before he can switch tasks.  Often, a tantrum would ensue, a breakdown with tears because J could not transition.  He'd lock up, but then so would my husband, and they would be at an impasse. 

I would tell Stormtrooper, "You have to give him a warning.  Tell him he has five minutes before dinner, give him time to begin the transition."  

But he wouldn't do it.

To me, it seemed like such a little thing.  Just give J a warning, begin the process, and he would, and can, transition from one task to the next.  Since Stormtrooper doesn't understand the why's of the ASD mind, he has trouble accepting.  Personally, I don't understand being unable to transition from one thing to another.  I know that dinner is coming as soon as someone begins cooking, so when it's finished, I can go into the kitchen and eat. J cannot do this.  Even though he will see one of us cook, even if he has already asked what food he will be eating, if we don't say give him a timeline, he cannot stop in the middle of what he is doing.  I may not understand why he does this, but I understand that he does it, so I can adjust myself accordingly.  If Stormtrooper doesn't understand, he resists the adjustment.

One night I told Stormtrooper, "Either give him transitional warnings or stop complaining about his behavior because I'm no longer here to listen."  So he began to do so.  You have ten minutes and then you need to clean your room ...  Okay, now it's three minutes and then you'll have to clean your room ...  Clean your room.  And then?  It was like this epiphany.  It worked.  It's not a perfect system, there are still times J resists switching from one activity to another, but overall it's such a simple thing and now that Stormtrooper does it, J can transition well and they don't butt heads.

The funniest part of the whole thing was how Stormtrooper said to me a while later:  "Giving J warnings really works, we hardly ever have meltdowns anymore."  And he said it like it was his idea.  Which is truly fine, as long as he and J have easy-going nights when I'm at work.

Through this ASD journey, the thing I've learned about my husband is that he has trouble accepting what he does not understand.  He does not understand the way an ASD mind works, so he has trouble accepting the changes that come along with it.  When I first began taking J to therapy, Stormtrooper seemed resistant to almost every single change.  It didn't matter how drastic or how subtle, everything seemed to bother him.   Which, in turn, bothered me, so I felt we were battling more against each other than we were battling the ASD.

It took a lot of time for Stormtrooper and I to reach an understanding about J.  I think he is more open to accepting what he does not understand instead of pushing back against it.  I think I am more willing to allow him to modify the changes to help suit him.  I take on tasks and projects head-on and full-force.  That is my nature.  So when a therapist suggests doing something new for J, I am 100% all in and ready to go.  It takes Stormtrooper longer to adjust to these changes.  For months he would not update the schedule, even though J responded to daily tasks so much better knowing what was coming next.  So I became less rigid and accepting of Stormtrooper's looser, more fluid schedule, and he became accepting of doing the schedule in general.

There was a dark time several months ago, where I felt Stormtrooper pushed back against anything that was ASD-related, where I felt alone, like I had no one to talk to, no one who understood.  I dreaded leaving the house to go to work or run an errand without J because I wasn't sure what kind of crazy stories I would come home to.  I have no illusions that my son doesn't have bizarre behaviors and rituals, so I know the stories were not exaggerated, but almost every night was so negative that I wanted to quit my job just so I could be a buffer between Stormtrooper and J.  I cried a lot.  I felt everything was falling to pieces.  I felt like I was failing at everything.  Between J's behavior at home and school, stories from Stormtrooper and the teachers at school, I thought I was losing some invisible battle against ASD.  There was this bubble around me, filling with pressure and sadness, and nothing seemed to be able to pop it.

Then I heard Stormtrooper describe J to someone.

He's one of the most kindhearted kids you'll ever meet.  

He can be very sweet and caring.  

But everything in his world is puppy dogs and rainbows, 

and he drives me insane.  

Yes, J often talks to himself, sings and twirls around.  He'll have a conversation with no one, look up towards the sky, smile and laugh.  The puppy dogs and rainbows.  But I think it was the recognition that J can be sweet and kindhearted.  It felt like an affirmation.  It was something I needed to hear, to know that even though J makes him crazy, that he doesn't resent him.  And, yes, J drives me insane, too.

It took a lot of arguments, a lot of talking, and a lot of stress before Stormtrooper and I were able to reach a balance.  We are very different people, which means we are very different parents.  Underneath it all, we have the same values and ideals, so at the core we want to raise our kids the same.  We have the same ultimate goals for them (get jobs, move out, be self-sufficient, be happy).  One or both of us could have thrown in the towel.  We could have said NO MORE.  It would have been very easy, and I don't think we could have blamed either of us if we had.

Through all of this, I have learned several things.

• Do not shut yourself off from your spouse.  Keep talking.

• Everyone has a different journey to acceptance.  Some takes longer than others.

• If you're the one who stays home with the kids then you're always going to understand them better.  It's up to you to help your spouse also understand them.

• Compassion.  Compassion for each other.  I have compassion that my husband works 10 hours a day so I can stay home.  I have compassion that he misses out on so much of our children's growth to ensure that they are able to stay home with me, so that I can help guide both our neurotypical kids, and also the ASD one.  He has compassion for me that I stay home and deal with ASD, babies, diapers, dinner, errands, doctors' appointments, therapy, prescriptions, etc.  

• Recognize what the other parent does right more often than what they do wrong.  Sometimes what you may think is wrong is just different and not wrong at all.

In the end, I love him too much to let some stupid ASD stuff get in the way.  In the end, I had to learn to adjust myself to both him and our new ASD world.  In the end, he had to learn how to adjust himself to me and ASD.  In the end, we're a stronger unit, laughing at the puppy dogs and rainbows, and being driven equally insane.