The End of the Beginning (Part 9)

Cailyn always sang. Usually, it was some repeating nonsensical phrase set to the lowering and raising of her pitch. During the summer of 2011, these songs became recognizable. We began noticing her singing songs that we forgot we’d sung to her as a child. We started testing how far back her memory went, by starting an old song and letting her insert the correct word. She was remembering things we hadn’t sang in months.

It didn’t stop there. Amber and I decided to try to get her to begin telling us what she wanted. We started by selecting two items that she knew and would have her say the name of the one she wanted. For awhile, she’d always choose the last option. For instance, If I said “Cailyn, do you want a strawberry or blueberry?” She’d always respond “blueberry.” We got a little smarter and began giving her an option between things like juice and daddy’s sock. Eventually, she learned to tell us what she really wanted.

This activity evolved into her asking for an item in our hand without being prompted. Soon she was coming to get one of us, grabbing our hand, taking us to the item we wanted, and saying the name of the item. When we set up her first goals with Ohio “Help Me Grow”, we said that our dream was that she could tell us what she wanted. This dream was becoming a reality.

To get some additional structure in her life, Amber and I decided to take Cailyn to school early. We felt that she’d benefit from extra therapy and experience with other children. We had heard wonderful things about the Findlay Center for Autism and Dyslexia, so we decided to take her for two hours a day. This wasn’t covered by insurance and it was all we could afford. We just wanted to make it to Cailyn’s third birthday, when her IEP would kick in and we’d no longer have to pay out of pocket.

Cailyn’s progress at school was great but, more importantly, she enjoyed being there. It was unbelievable to see her so attached to these teachers and to read her progress reports. This interaction began to bleed into her home life, where other people began to notice the difference in Cailyn’s interactions with them. She was a long way from where she should be, but even further from where she had been.

We began seeing a licensed pediatrician, who was also a DAN (Defeat Autism Now) doctor. We were looking for additional tips to build on Cailyn’s recent growth. To find one of these doctors who was covered by my insurance, we’d have to travel to Columbus. We gave it a shot and found it worth the trip. We were told to expand Cailyn’s diet to exclude dairy and artificial dyes. We were also prescribed B12, probiotics, omega 3 supplements, specific spices, and were asked to give her a mild laxative for a short amount of time. Cailyn’s digestion was apparently a contributing factor to her irritability, and she began to improve drastically when these steps were implemented.

It started with pushing cars and busses on the floor or couch, while she sang “Wheels on the Bus.” She previously had a fascination with wheels that made it impossible to get her to play correctly with cars. She also began making animals walk and she would mimic their sounds. We even caught her putting Woody (Toy Story) on his horse “Bullseye” and making him ride around the living room. She was beginning pretend play!

One day, while playing with a Christmas gift (correctly, I might add) we got another amazing moment on camera and shared it with the Facebook world. Cailyn spontaneously used a sentence! As she began to place a car sideways to go down a ramp, she realized it wasn’t going to work. She turned it around, made sure she could see the headlights and said “Car goes like this.” She has now begun to consistently string words together. She’s asking for things with sentences, instead of with a single word. She began school, today, and we’re expecting even more.

Parents of “typical” children press for consistent behavior whereas parents of Autistic children live for what I call “windows.” Windows are glimpses into your child, where you see the potential that they possess beyond their current abilities. Windows allow you to gaze, ever so briefly, at what life would have been like on the other side and it brings hope of that life still being attainable.

I’ve seen into the window of Cailyn. I looked straight into the eyes of someone that cannot be reduced to a diagnosis or held down by a statistic. Though Cailyn has some good days and some absolutely horrifying weeks, we have this hope; That at any moment, she may break out of her box just enough to share herself with us. We’ve reached the end of the beginning and the next chapter is the first step to her conquest.

The irony is that all along I thought I needed control so that I could fix her. As it turned out, I needed to lose control so that she could fix me.

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