Defying Expectations

My son and I had a monumentally awful experience at a Girl Scout tree lighting event a few years ago. It was just as he was getting old enough to assert himself, but before we fully understood autism and what came with it.

The event was in a small and very cramped room at Town Hall, made even smaller by the giant Christmas tree parked in the middle. My daughter was there to hang decorations but the only thing he wanted to do was blindly run through the hallways. It was the first time I had experienced this behavior, wasn’t prepared, and didn’t know how to handle it. I tried to restrain him but the agonized reaction was worse than darting after him outside. So, after all his squirming and yelling, I gave in and let him race away with reckless abandon.

Olivia had to have someone else help her up the step ladder to put up the decoration and I, standing in the doorway, watched as Lucas almost ran head-on into oncoming people. I sped over to grab him and, in doing so, lightly backed into one of the mothers from another troop. Unprepared for any of this and beyond embarrassed, I offered a pretty exhausted:


To which, she rolled her eyes and exclaimed an annoyed:


I felt terrible that day. We’ve never had another outing quite like that since. Sure, it hasn’t always been Mardi Gras, but it’s never been as bad as it was at that Christmas Tree. Unfortunately, when it comes time to take my son out somewhere, that’s the first place my mind goes. I always think of that damn tree lighting.

walkingI spend days agonizing in my head over how he might be before most family events. I tell my wife that the car ride will be too long or the people there might get annoyed. There are always a hundred reasons why I don’t think he’ll be able to handle wherever we go.

And nearly every single time, he proves me wrong.

He’s shined on airplane rides and watched quietly at theater shows. That’s not to say that he’s never had a meltdown moment or yelled out in quiet situations. However, he’s done so far less in his life than I thought he would after that first day.

At the heart of it all, my son is unpredictable. As a non-verbal six year old, he can’t tell me, “Yeah. Let’s go to Chuck E. Cheese.” A lot of what he enjoys or doesn’t enjoy is guesswork. Case in point – he doesn’t care about Chuck E. Cheese at all. Bringing him there is like bringing him to the library.

Most of his favorite places come as complete surprises. They’re stumbled upon by accident and born by sheer chance. We’re constantly discovering them. That’s not an exaggeration either. The most recent time this happened? Yesterday.

With an hour to go before Olivia had to be delivered to a friend’s party, the three of us were looking for something to do on a late Sunday morning. After scouring the web for local Long Island events, I decided we would go to a “sensory friendly” play area that was geared towards children on the spectrum. In total, it would be $30 for less than an hour of play with no guarantees that any of us would even like it. When we drove by and saw how barren the location looked through the window, I opted to take them to a park I knew about nearby.

When we parked the car and began walking in, Lucas started the same monotone whine that he does when we walk through the produce section of the supermarket. It grows in volume as he grows in annoyance with his surroundings and I have to talk him down from getting too upset. With each step, his agitation grew bigger. I started to suspect that I had made a huge mistake.

In my head, I had already drafted up possible exit plans. Where could I take them when he inevitably has a meltdown? I saw Christmas Trees and that jackass eye-rolling woman in my mind. It’s Jingle Bells all over again. This whole park trip was surely doomed.

smilingOnly, it wasn’t. In less than five minutes, Lucas was having a ball. He ran from the blacktop to the sand and climbed onto different play areas himself. Seeing his sister on the swings, he went over to one and eagerly sat on my lap so we could swing together. Before long, he was laughing – genuinely laughing – with pure glee. Olivia and I couldn’t believe how much he loved it.

Getting a good picture of both kids smiling and looking together is like getting a picture of Bigfoot in my family. Yesterday, I got a ton of them. It was a day so amazing that you’re aware of how amazing it is as it’s happening.

As we left the park, Olivia turned to me and said,

“I’ve never seen him so happy!”

I never had either. It reminded me that time has moved forward. The early days of not knowing the future of life with Lucas was over. Will there be overwhelming events? Sure. Will there be judgmental people? Definitely. Are they the norm and do they define who we are or what we do? Not at all.

As a parent of a child with special needs, it’s easy to let those bad moments burrow into your brain. They stick with you. The dirty looks, stupid comments, or difficult situations aren’t easy to wash away. The world is a giant place, though, and the opportunities for great memories are abundant. If you let the ghosts of yesterday keep you from the experiences of tomorrow, you miss out on all life has to offer.