Amber Strikes Back (Part 6)

After our appointment with the child psychologist, Amber and I took some advice he gave and subscribed for a free trial to “Rethink Autism,” a service that empowers parents to do ABA therapy at home. We also applied for additional outpatient therapy for Cailyn. We were determined to do things using a methodology that was proven to work. Although we understood the importance of getting professional services, we knew we would have far more time and impact with her than anyone else. We needed to be therapists at home.

I’m not going to pretend to be an expert on ABA therapy. I can only speak from our personal experiences. The basic principals are repetition, hand over hand demonstration, repetition, positive reinforcement, and repetition. Although your ideal ABA therapist is specially trained on techniques for teaching Autistic children, a supplementing support system at home is critical, as it creates continuity and (you guessed it) repetition.

We both worked with Cailyn a lot, at first. After just a day utilizing ABA techniques and having video instruction, we got her to respond to her name for a bite of a graham cracker. She progressed to coming across the room when her name was called. Soon afterward, she would do it without a reward.

The results sold us. Amber was home far more than I and she soon began to develop a passion and gift for teaching Cailyn. We decided to sign up for a year subscription and were soon pouring countless hours into therapy. This often involved four to six hours of what we called “focused” therapy, where the teaching took place in our home office with the door closed. We bought a miniature table and chair for the room and determined it would only be used for ABA instruction. This helped Cailyn delineate between play time and learning time. There were short breaks in between, but these sessions were largely a structured marathon. Each lesson was planned, each trial charted, and every success celebrated.

Early results were positive. Cailyn was listening and performing basic tasks. Soon, these practices became habit and seeped into our everyday interactions.

Just a few weeks after the first appointment, we had to return to the psychologist for the results of the testing. This involved placement of Cailyn on the Autism “spectrum.” Amber was convinced Cailyn would be placed with high functioning Aspergers, due to her proficiency with letters and numbers. I tried to prepare her for an Autism diagnosis in the “moderate” range. Either way, we were determined not to make too much of it. Cailyn had come a long way since these tests were run.

We shared our progress of the last few weeks with the doctor as we sat to conduct business. I remember opening the report and completely tuning him out. For me, it was about the cold, hard facts. I began to scan through the pages and charts. Let’s just say that Cailyn wouldn’t need a Sherpa guide to reach her flag on those bell curves. Finally sick of the numbers, I wanted a summary.

“Doc, (I didn’t actually call him that) where exactly does this all place her on the spectrum?” I asked. His answer was complex.

“Based on our assessment, she definitely doesn’t fit with an Aspergers diagnosis. We’re talking Autism and in the severe part of the spectrum. With the progress you’re seeing, maybe just on the line of moderate to severe.”

He must have seen our faces go pale, because he offered a ray of hope.

“Cailyn is extremely young to get this diagnosis and I can count on one hand, all of the families I’ve seen that have done what you two are doing for your daughter. Literally, I can name the other four. It’s rare that we see this level of commitment at home. You really have the opportunity to move the needle significantly.”

Over the course of the next few weeks, Amber kicked therapy into full gear and we began to see some of the most amazing progress to date. Cailyn was imitating tasks, stacking blocks, matching items, sitting and waiting. It’s truly amazing to see a mother so possessed. The success seemed to only increase her drive.

Although Cailyn was generally trending positively, therapy was a long and emotionally draining process. Many times there were hours of crying, screaming, and biting…on better days. She also had some really terrible times, where she suddenly lost the ability to do everything that she had learned. There were also so many concepts she couldn’t grasp and she was still nowhere near talking.

…And she was about to become a sister.

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