The Lowest of Lows and Highest of Highs

I’ve delayed writing this post for a while. I’ve written it in my head 20 times, and I’ve certainly told the story, but for whatever reason, I’ve hesitated actually starting to type.

Autism forces you to face fears that you never imagined. Sometimes it’s fears that every parent has, but they’re just heightened in the world of autism. Sometimes it’s a fear that no parent should ever have…but we do. So this is the story of two common fears in autism…one absolutely terrifying, the other unbelievably heartbreaking. And it happened within a timespan of less than 24 hours.

It was a Sunday. I had gone for a run. Apparently, Kellen had gotten really upset when he realized I was gone. Patrick said he never really calmed down and constantly looked for me. When I got back, he seemed relieved, but I could see that he had been very bothered by my absence. Patrick went to get us lunch, Larkin was laying on the couch playing on her tablet, Kellen was sitting at the kitchen table with his iPad. I snuck upstairs to change shirts.

What I didn’t realize is that my invisible wall of security had several cracks in it. Larkin had headphones in, and I didn’t see it. Patrick had turned off the beeping that usually happens when doors open, so that he wouldn’t make so much noise letting the dog out. Patrick hadn’t locked the front door when he left.

I changed my shirt, I remember hearing the theme song from Ben 10 floating up the stairs as I did. Then I decided to fix my ponytail since I was a sweaty mess. A few more seconds. Took off my running shoes. A few more seconds. And as I came around the corner to head to the top of the stairs, I was struck by the silence. I called down as I walked a little faster “Kellen?” No answer, no noise. “Larkin, where’s Kellen?” No answer…now I see the headphones in her ears. I look at the kitchen table, there’s the iPad, but Kellen’s not there. I scan the living room and immediately turn to my right and see the front door. Open just a crack, maybe 3 inches.

That’s the moment my heart stopped. That’s the moment nightmares are made of. That is every autism parent’s worst fear. That image and moment will never be erased from my mind. I sprinted down the hall, screaming his name, threw open the door and ran out of the entryway.

And there he was. He looked to have been most of the way down the driveway, no shoes, nothing in his hands. When he heard my voice, he turned immediately and ran (sprinted) directly towards me. I never stopped running, so we collided at the top of the driveway as I bent down and he ran straight into my arms. Our faces were mirror-images. There was no relief, both of us had looks of sheer terror. Both of us seemed to be saying “Oh my God, that was almost it, I almost lost you, we almost lost each other, Oh my God, are we okay?”

I don’t know that we’ve ever hugged tighter. I don’t know that he’s ever been so still and so quiet in his entire life. We must have stayed there hugging for 2 minutes or so. Not moving. Just trying to breathe again. I remember feeling and hearing our hearts beating…they felt like they were trying to outrun each other. Yet we were still as statues.

I picked him up, never breaking our embrace. I walked inside slowly, he never took his head from my shoulder, his arms from around my neck, we walked over to the front window, and I sat down on the carpet. Him in my lap, our arms still around each other. I couldn’t move. Apparently neither could he. One minute, 5 minutes, 10 minutes later, I honestly couldn’t tell you, Patrick pulled into the driveway. When he walked in the door, he knew something had happened. Kellen saw him and for the first time we stood up, and Kellen walked off. I went into the kitchen, and as I tried to get the words out of my mouth to tell Patrick what had happened, the tears came. I couldn’t control them, I was shaking, and I couldn’t calm down. Then I feel a little hand at my side, I look down to see Kellen. He’s looking straight into my eyes, and I see his lip start to quiver, his eyes water, and I see him start to cry.

Kids like Kellen “aren’t supposed to do that”. They’re not supposed to show empathy, they’re not supposed to share emotions. But Kellen fills every day with things he’s “not supposed to be able to do”.

He cried because he saw me upset, he cried because he felt my fear, he cried because he shared my fear, he cried but he completely and fully understood the bullet that we just dodged.

I don’t think we left each other’s side the rest of the day, as if there was an invisible tether between us. You could feel the still overly emotional states we were both in. We had survived…this was the fear that I mentioned above as absolutely terrifying.

Now we get to heartbreaking, but you see, it’s heartbreaking that the fear exists for parents like us. But for us, this next tiny piece of our story is not about heartbreak, it’s about wonder, it’s about success, it’s about love.

The next morning, it’s as if we had an emotional hangover. I went to drop him off at school, and as I stood there talking to his teacher, he began to get sad. I could see him struggling not to cry, and as I looked down, he looked straight into my eyes and said, as the tears started to come, “I Love You.” I put my hands on both sides of his face, bent down, and said “I Love You Too Buddy”. And then I started crying, so we knew we had to get him inside before this unraveled. I cried through most of my drive to work, and his teacher said that they all cried after I drove away.

You see many parents of autism, especially those with initially non-verbal children, fear that they will never hear their child utter the words “I love you.” I certainly feared it. And while we had heard it many times in response to us telling him we loved him, he had never said it spontaneously, completely on his own. But there we were, having had a shared experience the day before that was still weighing on both of us, and he chose to tell me that he loved me. No prompting, no routine, no cue that we missed. He loved me, so he told me. While the 5 seconds (that felt like 5 lifetimes) he was gone made my heart heavy and weary, the 5 seconds of love between us restored my faith in all.

Yet, the fears remain. So we fight back. The beeps are back on. And we’ve changed the front lock, so now we have the ability to lock ourselves inside with a key rather than a turn lock. Whenever possible, I leave nothing to chance. And I will take nothing for granted.