Flashing Lights

Being a parent of a child on the spectrum is a quite a journey -- a series of highs and lows and everything in between. There are celebratory moments of progress and success. There are challenging moments of regression and struggle. Then there are those other moments when autism becomes a giant undeniable force. It appears out of nowhere like a flashing neon light blinking "he's different...he's different....he's different!"

Parents who have a child on the spectrum know how to deal with tough situations. Actually we've been in so many before, we have practically developed a sixth sense. We may not have a crystal ball, but we can usually tell the future. Most of the time we can read all the signs and know just what to do to head off a melt down. We know how to prepare for every game and know which plays to put in motion at any given time. But sometimes, there are moments where all of that goes out the window and we are reminded just how hard life can be for our little ones.

We'd been coasting along under the radar enjoying Evan's progress, which was occurring across the board. He'd even started to observe his peers and become more motivated to do things independently. Of course it was the perfect time to be reminded that no matter how high-functioning Evan is, autism is always there and ready to rear its ugly head when you least expect it.

We arrived a few minutes late to Evan's classmate's birthday party. The karate instructors had the kids lined up and participating in games when we walked into the backyard. Evan refused to join in and insisted on sitting to the side and just watching. When the karate lessons were over he played with some of the other kids on the swing set. The playing was a mash up of scripting (Evan), teasing (other kids) and regular five year old play. It was better than watching Evan stand in the corner and talk to the plants -- which is what would have happened a year ago. I'll take what I can get. I turn around and see Evan start to run to the sliding glass doors and squeeze by before I can catch him. I enter the empty house and grab Evan's hand before he can climb the stairs. "The party is outside, Buddy. We're not allowed inside the house," I tell him. He starts whining and manages to pull away and start clamoring up the stairs. I know what's happening. He remembers this house from a playdate a few months prior. He desperately wants to go to the birthday boy's room and find whatever book or toy he has pictured in his mind. I explain, I insist, I bribe and nothing works. His whining has developed into a full on meltdown. We walk down the stairs and I hold Evan's hand as he fights me- kicking and screaming and yelling. Another parent walks by and asks, "does he want cake?" "No, he doesn't want cake! He's the only child who didn't eat cake. The only child who didn't participate in the karate games. The only child who can't see when other kids are teasing him. And the only one having an epic melt down in the middle of this party!" Well, that's what I wanted to say. Instead I just shake my head and walk Evan out to say happy birthday to his friend and thank you to his friend's mom before escaping the stares and getting the hell out of Dodge.

That neon flashing light damn near blinded me that day. "HE'S DIFFERENT!" it blinked blatantly. Yes, he's high functioning. Yes, he's doing well. But he is different and don't you forget it the blinking sign could have read. A birthday party where all the kids are having a blissful time is where my kid struggles. The environment is loud and abrasive, the surroundings unknown, people asking him to do things he's unsure of, new faces and noises and rules he's not used to. "Don't forget who he is," I remind myself on the car ride home. When it's smooth sailing I can easily let myself be convinced that we've escaped autism. But we haven't. It's always there and I can't forget that no matter how well Evan is doing, he will always have Asperger's Syndrome and I'll never be able to predict how it will manifest.

These flashing light moments are the only times I feel sadness. It sneaks up on me. I'm not ready for Evan's struggles to be center stage for everyone to judge. I can never be emotionally prepared for those moments. We pull into our garage and I take Evan out of the car as I cry. When he was three years old my crying didn't even register on his radar. At four years old he thought it was funny and would ask me to cry so he could have a good laugh. But now he sees the tears and he hugs me. Not the scripted flopped arms over my shoulders, but a real hug so tight I can feel his little arms around me. He says, "Don't cry. Don't be upset." He takes my face in his hands and looks me in the eyes. With authority he says, "You have to count to three and calm down." OK, the last part was from a show, but still! It was just what I needed. A reminder of the progress he's made, the feelings he can recognize, the empathy he has and his ability to express it. Everyone is entitled to a bad day, a moment of pity or a flash of sadness. I'm so lucky my boy could look me in the eye and pick me back up.