“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…