Tag Archives: ABA

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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Over the Rainbow (Part 8)


There is a calendar function on “Rethink Autism” that allows a family to track therapy sessions. It was very satisfying to look back on the months of March and April. The calendar was full of color and each day was full of completed activities. It was tangible progress.

Let me stop this for a moment. I’ve found that dealing with Autism is a very emotionally charged and subjective experience. A single event can impact your entire week and will distort your view on the prognosis. Some days, you’ll feel as if you are on the right track and others it will feel like you’ve spun your wheels for months. This makes it absolutely critical that you track progress in an objective manner and take video of milestones. Similar journaling tactics can have a positive impact for almost anyone, but I can not stress it enough for a parent fighting Autism. Someday, you’ll be depressed out of your mind and need to look back to remember how far you’ve come. It helps to even out the ups and downs to focus on the “trend.” Back to the story.

Looking back at the calendar for May and June is much more sobering. The first two weeks with Dalton were spotty and the frequency continued to decay until it eventually faded into complete blank. We still did unstructured teaching, but didn’t have time to track it. Cailyn was continuing to regress and rebel. She began to fight sleep at night and would scream, waking us and her brother. She was still refusing to do tasks that were basic to her before and she was hitting herself and biting more frequently.

Children that hurt others can be easily dissuaded from their actions, but how do you separate a child from herself? Watching the frustration and pain in her eyes as she bites into her own flesh was torture to us. We were helpless to stop it. The teeth marks and self-inflicted bruises that lined her arm were reminders that the joy was fading from our relationship with Cailyn. We needed something more than ABA alone. We needed to try to calm her behavior.

Amber had been reading all of the Autism material she could get her hands on. That included success stories of children with Autism. She was determined to try anything to help. As a result, she started Cailyn on a Gluten-free diet.

I’m not going to profess to know details about all of this. I’ve had conversations with my wife and medical professionals about any things we try with Cailyn. I enter every decision knowing potential benefit, risk, and risk mitigation. I will not, however, try to convince anyone else to try something for their child. I only serve to bring up things that helped us, so that you may also decide to have a conversation with someone much brighter than I.

Within a week of going completely gluten free, we observed Cailyn’s behavior to improve. We began to doubt what we were seeing. Was it placebo effect? Maybe. Then she started to grasp communication through sign language, which was never successful, before. Then, one day Amber was blowing bubbles for Cailyn and asked her to say “bubbles.” This was no different from an aberage day’s sequence but what followed would leave us with mouths agape.

Cailyn responded “bubbles.”

As you know, Cailyn had been making sounds and even saying full words to identify certain things. Primarily, this involved flash cards, letters, numbers, and colors. It also always happened on her terms. We could never get her to repeat anything, nor could we convince her to make a sound. We just had to be ready to react, when the sound came. By far, our longest running therapy test was to get her to repeat a simple sound on request. We went for months with almost universal 0/10 failures on that activity. She never passed a trial.

We blew some bubbles and tried again. Again, she repeated “bubbles.” We started asking her to say a ton of other things, “hi”, “happy”, “pretty”, “love”, “shoes”, “please”. She could suddenly do it all. It was like a light “flipped” on. We took a video and posted it on Facebook for the world to share in our triumph. July 9th was one of the proudest and happiest days of my life.

A few weeks later, I was in New York for work. After a week away, I came home and was greeted enthusiastically by my daughter. I began to sing. As terrible as I am, I sing to her because I had discovered that she would maintain complete silence and eye contact for certain parts of particular songs. I started with her favorite:

“Someday, I’ll wish upon a star and wake up where the clouds are far behind me. Where troubles melt like lemon drops, oh way above the chimney tops. That’s where you’ll find me. Somewhere, over the rainbow blue birds fly. If birds fly over the rainbow, why, oh why can’t I?”

A second after I finished, Cailyn’s voice breaks the silence.

“So where owa wa waybow bue bird fly.”

Amber, Cailyn’s grandparents, and I all sat there in stunned disbelief as Cailyn just smiled.

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