Have you ever had to make a decision that you just didn’t want to? A decision that even though you knew in your heart was the right decision to be made, still felt so much like defeat, you cringed at the thought of it?
As a general rule, you will find the upside of life on the spectrum scene here, but this week, it’s time for a reality check. There are some tough times – moments, days, sometimes even weeks.
I have been blessed with a family of thespians. I grew up watching my brother perform on stage and honestly, wanted nothing more in my younger years than to be just like him and grace the stage myself, but by the time I got to high school, schedules had changed and I had to choose between ag class with FFA membership and performing arts with stage performance. I chose FFA and have never regretted that decision (another story for another day), but still, to this day, I love theater, song and dance.
When I met my FFA sweetheart and learned he’d spent his share of time on stage, well, let’s just say it didn’t take much convincing to know I’d found my guy. We dated, graduated from college, got jobs, married, bought a house and had a family. It seemed like the American dream. Some days, most days, all these years later, it still does.
We could not have been more thrilled when our kids started demonstrating a love of performing as well. Rob, now 15, made his debut as Geoffrey, the gosling, in Charlotte’s Web at the age of 6. I still remember his only two lines in the entire show…the wide-eyed “ooooooooooooooooooooooooh, it’s so BIG out here” referring to the world he discovered upon being freed from his shell, and “Then I wanna be just like you” in talking to Wilbur, followed by a duet with said pig. And to top it off, Tom and Jac were two of the cutest little spiders you could ever find, running and jumping around stage, over top and off of straw bales. They were only 2. And so it began, our history at the Ellisville Opera House.
It seemed only natural at that point to assume that all of our children would love the stage and want to be part of this magical experience of forgetting all there is to know about their own life and completely becoming someone new, solving their problems, and returning to life as we know it. And they have. Ben made his stage debut as Baby Jesus at less than a month old and Ali nearly stole the show last year trying to “help” Ben stand up during Soldier Boy in the Spoon River Rascals performance at the Opera House.
The Opera House is home to some fabulous memories for our family. We absolutely love watching our kids on stage. They are so filled with joy, you can see it in their eyes and their smiles and hear it in their laughter. The excitement oozes out of them, dripping from every word as they talk about the shows to anyone who will indulge them. And the joy from seeing them do something they love, it’s unmatched.
Then came autism. But with ITAP, and rehearsals, and a non-speaking role of the handsome soldier boy who only had to salute and let his sister kiss him on the cheek, we beat it. He beat it. Ben won the battle in 2012. He was the best soldier boy anyone could have ever hoped for. He enjoyed it so much, he even returned to the stage for the group numbers that followed and finished the show with his peers. To say it was a proud moment doesn’t even come close.
And then came kindergarten, and show time rolled around again, and the battle began again. Autism is a fierce foe, one you never really beat. You can make great strides and feel all is going well, even better than expected, but you never really let your guard down because you know it’s there, lurking, waiting to rear it’s ugly head.
Ben is doing very well in kindergarten. Praise be! We had many fears and uncertainties going into this school year, but so far, most have been handled so much better than we anticipated and the whole school thing seems to be rolling along quite nicely.
And now, show time, again. Ben loved being soldier boy last year, so much so that he still asks on occasion to go do it all again. This year, his role was that of a little boy who has a few lines in a song. Now, Ben loves to sing and dance. He can outwiggle anyone he’s ever met and scripting is his gig. Ask him about any Blue’s Clues episode and you’ll get your answer. But “Charlie says”, not on his radar. So we improvised, and said he could do the part of the song he wants to do. But he still wants to stand in the soldier boy spot on stage and that won’t work with Charlie says. Autism is rearing…
Rehearsals consist of a constant battle of trying to keep him quiet backstage while letting him play until it’s his turn. It’s a workout like no other. I have the biceps to prove it. At the last rehearsal, he looked at me, right in the eye (if you know autism, you know how key this is) and said, “Mommy, can we just go home, please?”
“Ben, do you want to be in the show?”
“Do you want to do ‘Charlie says’?”
“Ben, if we leave, we can’t come back. No more ‘Charlie says.’ No more on stage for Ben. Just watching Tom, Jac, and Ali in the show. Do you understand?”
“Yes. Let’s go home.”
To say I felt defeated would be the understatement of the season. I sat there thinking through the situation: Why are we here? Why is this important? Is it for him or for me?
I want so desperately for him to not miss out on stuff, especially something he enjoyed so much last year. But… The buts are heavy.
I gave my son the freedom to choose and he did. It’s not the choice I hoped for, but it was his choice. I told the other mom backstage we were done and headed out, near tears the entire seven miles home, wondering if I’d done the right thing, not so much because I wanted him to do it, but because he so enjoyed it last year, so much that he still asks to do Soldier Boy again and again and again. And he loves to watch the video from last year, and to look at the pictures, and to dress up in the suit. I thought he wanted to do it, and to be honest, I wanted him to want to do it. But that was last year, this is now and he made his choice.
Chris clued me in that the transition to kindergarten could be part of the breakdown from last year. He works so hard all day at school. So perhaps he’s just done forcing himself into our world by the time he gets home. Perhaps we need to give him the freedom to be in his for a while. And yet, I still felt so deflated having walked out of rehearsal, defeated in fighting autism, feeling as if I’d failed him in this battle and given up on seeing this glimpse of my son. Most days, I feel as if I can take on the world because part of me feels we already have, but that night, that night, I felt as if autism had won. And I’m really not a good loser.
But then I noticed something. Ben was no longer fighting me. He was no longer arching his back. He was no longer scripting. He was no longer being loud. He was smiling. He was making eye contact. He was talking, not scripting, but talking to me. He was Ben. He wasn’t a kid on the spectrum, he was my son, my so very happy to be home son. Our two worlds had once again become one. And for a brief moment, I got the glimpse I’d been trying to find.
I had no idea the freedom I’d find in letting my son choose not to be in the show, even though it was something he so very much enjoyed last year, even though it is something we had looked forward to since the last curtain in 2012, even though it’s something we’d been preparing for over the last month, even though it was something I wanted for him.
When Chris and I looked at the calendar last night and all I saw on today was 6-OH indicating play practice tonight, I didn’t have that kicked in the gut feeling knowing I’d have a battle on my hands, I had the sweet feeling of freedom, knowing I’d have a couple of hours with our boy tonight while his siblings were at practice. I’ll have my boy, at home, in his world, our world, happy. Oh sweet freedom!