Tag Archives: Healing

A Road Paved with Never


“Based on these test results, Cailyn is extremely delayed…based strictly on what we’ve observed, I can’t say that I would expect her to communicate verbally; certainly not in sentences.”

We quickly learned that the depths and complexities of Cailyn’s capabilities couldn’t be so easily summarized by anyone. Just months after hearing that Cailyn wouldn’t speak to us, her first repeated word (“bubbles”) was triggered as an incentive to play with bubbles. Her second, third, fourth, fifth, etc. all followed within minutes. She could suddenly say ANYTHING and it was as simple as a switch “on.”

This was no anomaly, but the beginning of an emerging pattern: Cailyn was only a single connection away from an exponential jump in progress. One day, while playing with a Christmas gift, we captured another amazing moment on camera as 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.”

The search was on. If incentives and toys could flip the light on, we were going to try anything and everything to jumpstart another achievement. Unfortunately, Cailyn wasn’t exactly able to communicate the things she loved. We began a painfully long and expensive cycle of trial and error, where we would buy anything if she showed interest. We’d give families gift ideas for birthdays and Christmas, only to get the same response.

“All done.” Cailyn would say, pushing away the item.

While she has made progress using the word “yes,” Cailyn doesn’t understand the abstract concept of “no.” Negatives are actually quite complex. The word “not” makes an entire statement into the opposite. We learned that Cailyn wouldn’t respond when we asked her not to do things, so we had to give her positive reenforcement to perform another task, instead. So, as opposed to asking her not to hit herself, we’d instruct her to put “hands down.” Cailyn can’t even tell us when there is a problem, she only knows solutions. Instead of telling us when she doesn’t feel good, she asks for “medicine.”

Over time, we’ve slowly happened into items and incentives that have led to miraculous gains. Equine therapy sparked her ability to follow multiple-step instructions and resulted in tear-free fine motor gains. Cailyn’s therapists had worked with her fruitlessly on tracing, when we discovered she responded to an iPad tracing game using stars as points. When her teachers used stars, she excelled. Now, we’re using numbered points and she’s connecting the dots. Her love for suckers have even led to her beginning to spontaneously and independently use the restroom.

Progress is rarely overnight. To get Cailyn to ask for things she wants, we started by letting her pick a picture on a set of cards. We moved on to labeling these items in the house, so she’d take us to them. Then we took off the labels. When she learned to repeat words, the labels became vocal. Then we began making her use the name of the item, even when she couldn’t see it. Now, we make her use sentences, ask her to be polite, and are pushing adjectives. It’s a beautiful thing to hear the toilet flush, see Cailyn run in without pants, and then hear her speak…

“Mommy, I want sucker, please. Pink. Yes.”

Cailyn should not talk; She’d never use sentences. She can not go to Kindergarten and could not keep up in a typical class. Cailyn is not fit for a job, can not meet a boy, and will not live independently. These are the things we read, see, and are told every day…even by our subconscious, in dreams. In a moment of vulnerability, I might admit to having believed every one of them.

Cailyn’s journey is littered with impossibilities, riding a road paved with “never.” She’s surpassed each of these expectations; relegating unrealistic milestones to her rear-view. Step-by-step, and sometimes in leaps, Cailyn is defying every one of us and becoming the girl I was afraid we’d never see. She doesn’t know your limitations…

…because Cailyn has never been good with negatives.
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Flawed with Intention


I pulled my car into the campground, pulled out my bags, and began the trek to the dorm. I was now a working man and had missed previous day, so the grounds were already buzzing with people talking and playing. In the distance, I spotted a few friends and raised my arm to make sure they saw me. They began running in my direction. As they approached, it became clear that they wanted to tell me something.

“Did you hear about Ryan?”

My friend, Ryan was a rather large guy. I’m guessing about 6’6″ and probably about 235 pounds at the time. The previous night, he had been playing in a classic camp pick-up basketball game when he came down hard and rolled his ankle. Apparently, he was in massive amounts of pain and, as the swelling got worse, they decided to have someone go get a vehicle (he couldn’t walk) and drive him to the hospital.

As he laid on the bench in agony, our pastor’s son walked up to him and decided to fix the situation. He stretched his arm out to Ryan’s leg and prayed, in classic child-like fashion.

“God, make him all better…and give him some grape kool-aid.”

Although these details weren’t shared, I imagine the reaction from the group huddled around was a mixture of laughs and adoration. Everyone was probably wrapped up in that cute thing that they just saw, until something amazing happened. Ryan spoke.

“Guys…It doesn’t hurt, anymore.”

Ryan, being the practical joker that he is, would use any moment as an opportunity to get a laugh so everyone was naturally skeptical. Until, that is, he began to put weight on his foot. He stood up, walked around, and even jumped a few times before trying to restart the basketball game. Unfortunately, he couldn’t get his shoe back on over the swelling. Cooler heads prevailed, convincing him to go to the hospital, where they went through a series of tests and came out with the x-ray.

“Have you had any other problems like this, since the fracture?” the doctor asked?

Ryan looked at him, completely confused.

“I’ve never hurt this ankle, before.” he replied.

The doctor wasn’t exactly buying his story.

“That isn’t possible. I see evidence of an old fracture here. It had to have happened a while ago, because it’s healed over.”

The next day at lunch, the mess hall served grape kool-aid.

I continued going about my business as I listened to this story. I was mostly engaged, and although half sure that it was exaggerated, I was reasonably entertained. Just then, we arrived at the basketball court. I spotted a six and a half foot figure winning yet another unfair rebound battle over a smaller opponent and putting the ball back up and in. As he walked back, I noticed one foot had a sandal and sock on it instead of a tennis shoe. He caught sight of me and came jogging my way.

“Hey buddy!” Ryan called out “Did you hear the story? You’ve got to see this!”

He sat with one leg up on the bench and took off the sandal. As he began to unroll the sock, I cringed. It was horrifying. His ankle was swollen beyond recognition. I had never seen such a dark shade of purple occur naturally. Hearing about it was one thing, but the story was told when I saw him roll back up the sock and go back out to playing basketball.

Although years had gone by and the event was filed away in distant memory, the first time I heard the word “Autism” in the same sentence with my daughter’s name, I thought of Ryan’s ankle. The story kept recurring in my mind and Amber probably got tired of hearing it. For the longest time, I couldn’t make the parallel between this event and Cailyn’s struggle. Then it clicked.

It was the day Cailyn began to repeat things we said. She started saying all these words, which had seemingly come from nowhere. We were so happy, thinking we’d turned a corner. Still, I something bothered me. She couldn’t talk unless she waived her right hand up next to her face. Known as “Stemming,” this is one of a variety of repeated actions that many individuals with Autism perform to get stimulation or to concentrate on a task. In this achievement, just like every other in Cailyn’s journey, each ground-breaking success was met with another reminder that she still had a long way to go.

That is when I realized that Cailyn’s story may not involve Autism dissolving in a cloud of dust behind us. Although I would love to someday tell an entertaining tale about a girl, once diagnosed with severe Autism and then instantly completely “typical,” I’m not sure that’s our mission. I’ve reached a place of understanding, where the definition of “healed” has evolved beyond complete relief from symptoms, instead describing a process of unexplainable and supernatural conquest over them.

We are all made with scars; flawed with intention that when we succeed beyond our own capacity, our lives may have impact. The story of Ryan’s ankle would have only affected witnesses if not for the disgusting swelling and bruise. Now, it’s become a source of faith and hope for everyone who encountered him in the following weeks. Likewise, I believe Cailyn will continue to confound and amaze. She will excel in spite of her affliction but have lasting impact because of it.

Everyone has a story about their slow to talk, now completely normal relative who simply “grew out of it.” My little girl seems destined for a more powerful road and I’m okay with that.

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