Tag Archives: Daughters

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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Dancing With Cailyn

Every father with a daughter understands the almost supernatural pull that his little girl has on him. She holds in her fragile hands, the capability to crush or lift his spirit. She can make a grown man smile or cry…and sometimes both.

I remember long nights, taking careful steps up and down our hardwood floor as Cailyn laid with her head on my shoulder. She had digestion issues from birth and her “colic” would prevent her from going to sleep on her own for much of her infancy. This meant that I needed to walk, bounce, and hum to her ever so slightly for as long as an hour at a time. These were our first dances.

Eventually, we found that Cailyn slept on my chest better than anywhere else, which was fine with me. The only problem was that she had to be “walked” until she was totally asleep. She’d begin crying if I sat down a moment before she’d slipped away. At just a few months old, we could tell when she was asleep because she had begun to hum with me as we moved back and forth in the kitchen.

As I understand it, dependency on a person for sleep is one of the cardinal parent mistakes, outlined somewhere in chapter one of some imaginary manual. I felt, at the time, that I had justification for my actions and I really enjoyed the closeness. It creates a different bond…and may have been the best decision of my life.

You see, Cailyn was classified with “severe” Autism and, in case you’re unfamiliar with common symptoms of the condition, she would be likely to have a strong aversion to human contact.

If you’ve ever watched Cailyn and I interact, you would know the opposite to be true. If I’m laying on the ground, she’s going to jump on me and start to wrestle with me. Before bed, she wants to be tickled and expects “butterfly kisses” and “noozles” to be given liberally. Many times, when I kiss her and begin to pull away, she grabs my face and pulls my lips back to her cheek.

When I list things for which I’m thankful, this places at the top of the list. I honestly don’t know that I could survive this with a daughter that didn’t want closeness with me.

…and then there is the dance.

When she began to go to sleep on her own, the dancing began to happen during songs and at the end of movies. We’d watch something that would inevitably have music during the credits. I’d look at her and say “dance” and watch her eyes light up and she’d smile as she raised her arms to me. To a large extent, there is a lot of silliness in our dancing. She get’s thrown, dipped, spun, and flipped until we’re both worn out. It always ends in the familiar position of her head on my shoulder, with one of my arms supporting her weight and the other one holding her tightly.

We’d recently found a new dance song at the end of a VeggieTales video when the diagnosis came. “Beautiful” by Nichole Nordeman took on a different meaning, one night while Amber was at work. I just remember looking up videos of children with Autism, on the laptop as her video drew to a close. It was devastating to wonder if Cailyn would ever be capable of the father/daughter exchanges that I so anticipated. My concentration was broke when she came over to get my attention. I picked her up, but wasn’t in the frame of mind to be silly. She apparently wasn’t either because she immediately dropped her head to my shoulder.

It started with just me holding her, until the words started to get to me. As we rocked back and forth, I held her more tightly. I began to pray over her, which led to tears and a full blown cry. I began praying out loud. I’m sure I promised God everything I had by the end of that song. If so, I meant it. In return, I got just enough to make it to the next day. Cailyn pulled back and looked at my eyes. She must have noticed that things were different, because she touched the stream on my cheek and just smiled. I couldn’t help but smile back. The moments weren’t going to be what I always envisioned, but they would still tug at my heart.

We still dance. Although sometimes our current situation takes over the context of the song and I find myself emotional, it’s usually a great escape. In our dancing moments, it’s just her and I. All the worries of work and the world fade away. When I hold my baby girl, it feels like she’s a newborn again and I’m just walking her through the kitchen before bed. It’s a feeling of a more innocent and naive time. A place where Autism didn’t exist,

Dancing with Cailyn, after all, shouldn’t be possible.

Cinderella – Steven Curtis Chapman

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