The struggle

Lighted Orbs on the Great Lawn of the Atlanta Botanical Garden's Christmas Lights display which changed colors as Christmas music was playing.

Back in October when husband and I went to Atlanta for a weekend, we visited the Botanical Garden there.  We were mesmerized by the place and when we saw that they do a Christmas Lights display, complete with a train garden, we knew Sam would love it.  We came home describing it to him and the excitement began to plan our journey to see the lights.  We came to the determination that it might be best to go right after opening day (Nov 16) to avoid large crowds and to visit on a weeknight to further enhance his experience of it.  That is how we settled upon Nov 20 as our night to head down to Atlanta.  He was so excited the day before and Dad took a half day off work so that we could leave at 3pm and be there at 5 when they opened the doors.

And so it was that I yelled upstairs for him to get his shoes on, and head down so we could be on our way.  His mood was subdued and not as excited as it had been the day before, but we both knew as soon as we got there, he'd perk up and love it.  No sooner had we hit the highway when the first inklings of a problem were evident.  He started fixating on things we were saying, and repeating them back to us.  Never a good sign.  We both tried to remain cheerful and cajole him into a better mood.  On down the highway, we were looking at one another and sighing deeply.  We've seen this ugly side of autism before, and it does not bode well for a good time.  The anxiety for no good reason, the irrationality of what he fixates upon, and the inability to articulate exactly why he is feeling the way he is feeling.  Even with questioning and gentle probing, he seems to escalate and then start focusing on the slightest difference in my tone of voice.  The unexplainable anger starts to be apparent with the furrowing of brows, and the inability to calm down takes center stage.  I tell him, "We're doing this for you Sam.  You were so excited to go yesterday.  What happened?"  And all I get back is a scowl and more irritable repeating of words and fixation on how my mouth is making odd sounds as I speak.

At this point, I am meeting husband's eyes in the rear view mirror and silently saying, "This is not a good idea.  Maybe we should just turn around and head home."  But, because we so wanted the experience to be a good one for him with limited waiting in line, we've already purchased our tickets ($56) electronically.  We keep driving in hopes we can diffuse his mood and have a good time.  Halfway there, he actually finally says (when questioned repeatedly) that he does want to go, and we make a pit stop at Starbucks for some coffee.  He finally puts his head back and closes his eyes.  Sigh... whew.  Crisis diverted?

As we get off at the exit in downtown Atlanta and head up Piedmont, he awakens and the bad, irritable, irrational mood awakens with him.  But, we're there, and intent on having a good time, as I keep gently telling him.  "It's going to be wonderful Sam, you'll see."  It wasn't to be.  He scowled the entire time and stayed angry for no reason.  Then, he started fixating on how he's missed his dinner time, and he will not get to shower tonight or brush his teeth because, "it will be too late."  As we walk through the very beautiful gardens, it is so hard not to want to sit on a bench and just cry. So hard not to take any of this personally.  It's not him.  It's the autism.  It's unpredictable. It's irrational.  It's his inability to see things from another's perspective.  It matters not to him that we are saddened that he's acting like this and not having a good time at something we specifically planned with his enjoyment in mind.  It's my life.

All the way back home in the car, he's obsessing about how late it is and how we've upended his night time routine.  It's too late to eat, too late for his shower, too late for brushing his teeth... over and over and over again he rattles on as we try to navigate horrible traffic out of Atlanta.  We are deflated.  We are beyond sad, and trying not to be angry ourselves as he goes on and on and on about what a horrible night it's been.  It's SO hard not to take it personally.  It's so hard not to want to yell back at him or make him see how his throwing all this back in our faces when we were trying to do something for him is wrong and inconsiderate.  But autism knows no inconsideration for other people.  Autism is all about whatever is going on in his mind at the time and how big it is for him.  And so, we arrive home, defeated, beyond sad, mentally and physically drained and wondering why we didn't just turn around.  I think I would have paid twice the entry ticket price to not endure such a bad evening.  Chances are my normal sweet Sam will be back today, and all will be fully forgotten in his mind.  And that my friends, is the struggle with living in the world of autism.