It was the first day after 2012 Spring Break. Cailyn was in her car seat singing and grinning from ear to ear. Amber pulled into the school and helped her out of the car. They made their way to the door, Cailyn clumsily skipped with her tiny Dora backpack dragging on the blacktop. Amber didn’t even get to say her customary goodbyes. As soon as the door opened, Cailyn darted off to class. Her happiness was a welcomed sight after a long week of temper tantrums and time-outs. With Dalton around, preschool and ABA therapy became a release for Cailyn. She loved the routine and structure and she seemed to be thriving when she was there.
If school time was Cailyn’s release, it was a parent’s life saver. Amber no longer had the time to give Cailyn eight hours of uninterrupted, individual attention each day. It wasn’t fair to Dalton, who turned out to be so much more demanding than his sister. As we attempted to spread our efforts and time equally, our daughter’s progress slipped. When she began school full-time, things started to change. She was making real, tangible progress. What’s more, we were seeing all her accomplishments laid out in a student binder that we reviewed every day. Instead of treading water, we suddenly felt like Cailyn was moving forward again…and then break hit.
It was a perfect storm of Dalton moving around the house a lot better, finding his voice, and Cailyn being home more. The net result was all day scream-fests, violent outbursts, and a lot of crying. Cailyn was unable to focus on anything but her brother and he loved whatever attention she would give him…even if it was the bad kind. She began hitting herself and putting her hand in her dirty diapers, again. Even her sleeping was worse. She was rebelling against the change. We weren’t responding much better. Patience had run short, discipline was in great supply, and we were flailing around in vain, trying to establish a class structure to get us through. I remember laying there one night, unable to sleep. I looked over at Amber, completely defeated, and asked “How are we going to make it through summer?”
Summer came, school ended and, predictably, Cailyn’s behavior changed for the worse. During this time, my relationship with her changed. Instead of pressing focused lesson plans and charting progress, I decided to just concentrate on making her happy and having fun together. I’d get home and tickle her, give horsey rides, play games and run around with her. This was not a selfless endeavor, but my resignation to a life of Autism. I no longer had the energy to play the role of Sisyphus on my daughter’s mountain. If the boulder was going to crush me anyway, I was determined to have some joy on the ride down. I no longer had faith that anything I did mattered, and so I quit trying.
…At least that was my original intention.
One day, Cailyn and I were outside playing. She was galloping down the sidewalk like a horse and I was jogging more slowly behind. Suddenly she stopped. She turned to me, grabbed my hand, looked me square in the eyes and said “Ready, Set, Go!” She bolted off, holding my hand just tightly enough to force me to put some leg into it. She giggled excitedly as she ran and repeated the pattern, despite my best effort to explain that daddy wasn’t quite so in shape. When we came inside, I told Amber the story. What followed has been a recurring conversation in our household.
“Where did she learn that?” Amber asks, often stunned.
“Oh, she and I play that together sometimes. She must have picked it up.”
“She always imitate the things you do!”
This is just one small example. We were seeing all sorts of these changes in Cailyn. It was as if all of our efforts to teach her had been creating stress and discord (in everyone) and the “quitting” approach was actually encouraging her to interact and be a part of her surroundings.
One particularly fun-filled night I sat on Cailyn’s bed, before she went to sleep. I prayed with her and then looked her in the eyes and I saw a different look in them. She seemed so much more aware. I began talking to her, just as I would another adult. I’ll never forget the conversation.
“Cailyn, there is a part of you inside that understands me. I know things are scary and don’t always make sense. I just want you to know that, when you’re ready to tell us what you’re going through, Daddy is here. You can come to me and I’ll protect you. I’ll listen to you and make sure that you have everything you need to feel safe. I love you so much and, even if I never hear you say another word, I’m so proud of you. You’re daddy’s girl and you’re absolutely perfect.”
She never broke eye contact and, when I finished, she grabbed my face and brought it into hers and rubbed our noses together. I knew then that we were going to be okay.
It’s been a year since I left the bondage of a life, wherein my sole purpose was to fix Cailyn. Looking back on it all, I see how far she’s come. She’s become more social and aware of others, craving interaction and praise. She is communicating needs, wants, and even her emotions. She engages in pretend play and has made great strides in receptive communication, following instructions better than we imagined possible at this age. The most gratifying part is that I don’t have to look on a chart to see all of this progress…I was a participant. I’m discovering that she has these capabilities within her and I’m convinced that one day the switch will flip and she’ll confound and amaze. Not because of any specific effort we’ve made, but because she sees that we are safe.
I’m somewhere between Egypt and Canaan, so far from where I was found and an immeasurable distance from the place I hope to be. Here, the discontent and restless venture in circles, only to have their footprints filled and their bodies buried in sand. I, on the other hand, have been set free to live each day new. While I still struggle with the weight of a journey, yet to come, I’ve come to learn that time is a commodity without price. A man with an uncertain destination will leave Earth with only regrets unless he learns to find beauty and joy in the scenery.
Who knows, someday, while we’re all enjoying our time together on Cailyn’s journey, the light may just…