Steps Back, Steps Forward

It would be a lot easier if life was like television. Every lesson is overwhelming good or bad. One person wins. One person loses. The story moves on and it’s all easy to follow.

With kids, though, the lessons are never all or nothing. Children will both impress and depress you at the same time. The pride you feel in your child’s accomplishments could be balanced out by a nearly-immediate downfall. They win an award for scholastic achievement and then swear during their acceptance speech. Stuff like that. It’s how the non-televised reality we all live in operates.

When your child is non-verbal with Autism, those cyclical life lessons play out in some of the most unexpected ways. Unfortunately, it’s the negative experiences that tend to overshadow the rest. It’s easy to be so fixated on one specific victory that we miss all the other ones happening around us.

The perfect example is Lucas’s new gate-free life. I wrote about it a few weeks ago. After a lifetime with a barrier on his bedroom door, we finally took it down as it had become a safety issue. My boy, intent to wander the house at 3AM, was starting to fling himself over the top of it like an American Ninja Warrior. We figured that it was better to take it down than watch him lawn-dart himself into the hallway floor.

The reality is that the great gate experiment hasn’t really gone as smoothly as I had hoped. Sure, he would fall asleep without running free too much. He didn’t, however, stay in his room when he’d open his eyes at 4:30 the next morning. I was chasing him throughout the house and stopping him from running into his sister’s room long before the sun would rise. Before long, he and I were beginning our days – weekends included – shortly before 5AM. We became farmers without a farm.

In the midst of my sleep deprived life, strange things started happening. For example, a light in the living room would flicker on and off. It happened randomly and usually after we had all fallen asleep. I began to suspect that I was hallucinating from sleep deprivation or, maybe, we had a poltergeist.

We didn’t. We had a Lucas. In the midst of all this gateless insanity, he had learned to turn the lights on and off. Although it wasn’t skill anyone talked about, it was a new one for him. While his light-flickering might be difficult for the rest of the house to endure in the short term, the fact that he learned a new skill on his own was a good thing. For that, I was proud. It was a step forward.

I have to admit, though, I was pretty sad when we started tossing around the idea of re-gating his room. I was against the idea. It felt as though I had failed him. To me, that would be a step backwards. Yet, it felt like an inevitability. We couldn’t continue as we were going. It wasn’t so much that he would get up before sunrise, it was that he would terrorize our dreams like a little Freddy Krueger.

That was the biggest issue. Lucas would go room from room, clutching the nighttime music player that once hung on his crib and has evolved into his mobile evening companion. He’s go from room to room tapping us on the chins and trying to coax us up. Even after being returned to his bed, he would return to the hallway within seconds. We couldn’t live like that. No one was sleeping and, even though it would have given us some peace, I refused to give him with his entertainment iPad at four in the morning. It was a decision that sacrificed my own comfort in order to prevent him from becoming a monster. I knew that rewarding this middle-of-the-night face-poking would send all the wrong messages.

Then, two days ago, my morning was different. For the first time, Lucas didn’t come in to wake me up. I only knew he was awake because I could hear him in, what I assumed was, his room.

Happy with this behavior, I decided to get up and see him. It was 5:30, but still later than we had been sleeping. So, I stood up, shuffled across the floor, and exited my bedroom. That’s when I saw, across the still-dark house, one lone light on in the dining room. It was like the start of a horror movie. I expected to walk in and see Jigsaw from Saw on a TV monitor with a, “Hello, James. Let’s play a game.”

Nevertheless, I put one foot in front of the next and slowly made my way down the hall, which felt much longer than it ever had. I began to hear faint lullabies playing as I approached. The whole scene became creepier by the step. I turned the corner and that’s when I saw it.

The plastic music player was sitting on the dining room table and Lucas, resting his chin on his hand, was seated in one of the chairs, listening. He had woken up and, instead of bothering his family, went to the dining room, turned the lights on, and took a seat. He promptly stood up and ran over to me. I gave him a hug.

I was so proud in that moment that it’s hard to explain. This whole gateless lesson was never really about staying asleep. It was never even about staying in his room when he’s itching to get out. It was about courtesy and sharing the world with others. It was about my boy doing what he had to do without disturbing anyone else. That’s everything I ever want him to learn for life all boiled down into one sentence.

The next morning was equally successful and, although I’m mentally jumping for joy, I am prepared for whatever comes. We might eventually have to put that gate back on. He could always go back to suddenly running through the house again. I know and I accept that. I won’t, however, lose sight of all the other things he’s learned in the process. Turning on lights, consideration for others, and the ability to self-soothe could all be easily lost in the shuffle if my only focus was on whether or not he stayed in bed. It’s up to me to see those victories even during times where I feel defeat.

Some steps are forward. Some are backwards. Some are sideways. Some are steps that you never even knew your child needed to take, yet there they are. My son has a long journey ahead of him and he’ll need all his steps to get there.