Tag Archives: Milestones

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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An Introduction to Man (Part 1)

As men, we have some basic instincts that come with the standard load on an “XY” chromosome. We are pre-programmed to protect and provide for our families, form logical plans of action, execute those plans with precision, never ask for directions, and fix all that is broken. This is who I am and the most family-friendly way I can describe the general male populous.

As an individual, I’ve always been able to shape my circumstances through an accurate understanding of my limitations and supplementing areas of weakness with hard work, dedication, and the occasional call to a service technician (I’m a terrible handyman). I never understood hopelessness because hope could be manufactured through framing events in the perspective of people with “real” problems. I was in my niche and I played life safe enough to always succeed. It was a controlled, comfortable lifestyle.

Then came love, next came marriage, then came Cailyn in a baby carriage…

The moment she popped out, I counted fingers and toes and breathed a sigh of relief. Now I had complete control. The Big Man did His job (with some help from prenatal vitamins) for the first nine months. Now, I’ll take it from here.

It’s surprisingly easy to manipulate the environment of an infant. You keep them from the runny-nosed ankle biters in nursery and day care, throw on an extra jacket for a cold day, and avoid crazy old women in the grocery store. There are industries built on books, videos, toys, and step-by-step programs to make sure your kid is healthy, polite, and intelligent. The Internet provides access to medical advice, insurance allows you to take them to to doctor for every sniffle, and overpriced baby food will ensure they have the right nourishment. It’s a compartmentalized, logical, and controllable world.

Like most first-time (read “insane”) parents, I tracked milestones and freaked out when, at exactly 21 days old, my daughter wasn’t cooing loudly enough or following objects with her eyes. I remember Cailyn crossing the threshold on the average age to start crawling. Amber and I worked with her for three straight days and averted a global crisis by getting her to crawl while she was still in that “meaty” part of the curve. It was the same for every milestone, until we hit about a year of age.

Everyone has a story about their slow to talk, now perfectly normal relative. The stories become more frequent as your child falls further behind. After awhile, you even start to go through them in your mind. Finally, I came up with a solution. Like any red-blooded American child, Cailyn was fascinated with the TV, so Amber and I bought “Your Baby Can Read” for her first birthday. Surely, this was just a temporary setback that needed remedied so that we could resume a normal, controlled life.

After all, men fix what we deem to be broken.

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