Tag Archives: Therapy

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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The Theology of Doubt

I just sat there, speechless. In the first several months following Cailyn’s diagnosis, this was a feeling that was still new to me. Amber came over, placed her hand on my shoulder, and looked at the computer screen. There, she would see a projection of our monthly budget. For the first time, the big number at the bottom was in the red. Deeply in the red. I watched her reaction. It was one of surprise and fatigue. Her eyes finally fell from the screen, down to mine.

“What do we do, now?” She asked.

Over the course of the prior few months, we’d had several financially “uncomfortable” moments. There was the $7,000 genetic testing bill that our insurance initially rejected. There were numerous trips to Pediatricians, Autism specialists, Child Psychologists, Geneticists, and Neurologists. None of these were cheap. I just thanked God that I had a job that allowed me to cover it. We were still quite comfortable.

After Dalton, the expenses for another child kicked in. Right around that same time, we decided to fully devote ourselves to all natural cleaning supplies, we went organic whenever possible, and switched Cailyn to a completely gluten free diet. On top of that, we began giving Cailyn a cocktail of expensive vitamins and natural supplements prescribed by our DAN (Defeat Autism Now) Pediatrician to help with her development. Now, we were realizing that Amber could no longer continue her therapy sessions with Cailyn. We would have to start Occupational Therapy services, Speech Therapy Services, and ABA (Applied Behavior Analysis) therapy to supplement.

ABA services weren’t covered by our insurance and would be $30/hr at a local preschool, which specialized in Autism Spectrum Disorders. We had experience with the staff and had checked out the school. It was perfect for her. The only problem was cost. We’d have to send her for at least ten hours a week, for it to have an impact (Note: Do the math). When Cailyn turned three years old, we’d likely be able to send her there for free….but that was over a half a year away. We plugged the numbers into our budget spreadsheet and it wasn’t pretty. To provide her with these services, we’d have to operate at a significant monthly loss for the better part of a year.

Being the pragmatic individual that I am, I’ve always doubted whether Cailyn would lead a high functioning life. I found that doubt was easy to dismiss, as long as we had the financial wherewithal to invest in Cailyn. The moment we knew that her therapy would begin to drain our savings account, we began to question if they were worth it. Maybe, we thought, we could just wait until she turned three years old and then get these services for free? We started looking up alternatives, including options for Social Security disability benefits and family resource services. We didn’t qualify for any.

In life, you don’t know what you truly believe until you’re held over the flame. As a result of my experiences, I’ve developed what I term my “theology of doubt.” This is just a personal set of beliefs that have helped me reconcile my faith, with the cynical and logical mind God gave me. I grew up assuming that faith and belief are one and the same. I was ashamed that I sometimes lacked belief, because that meant I must also lack faith. I’ve since concluded that this logic is completely inaccurate. In my mind, faith is action in the presence of doubt. The measure of faith is greater when the action is of greater consequence or, actions being equal, when there is greater doubt.

To demonstrate this point, I consider a simplistic scenario of a child jumping from a ledge to their father. All else being equal, it takes considerably more faith to jump down from twenty feet, than from five. Likewise, it requires more faith to jump the first time, than on subsequent tries. As time goes on, the doubt fades away and is replaced with belief.

Amber and I couldn’t help but doubt. Still, we went forward in faith. We didn’t cut a single Autism-related expense. Month after month, we saw our savings dwindle. By December, Amber and I gladly agreed to forgo anniversary and Christmas gifts to each other. You see, the Cailyn that we first enrolled in these services couldn’t talk or tell us what she wanted. She intentionally avoided others and had frequent violent outbursts. In the months afterward, she was speaking and asking for things. She was voluntarily going to family members on request, was no longer biting herself, and was even riding a tricycle.

Cailyn is now three and covered by an IEP and an Autism Scholarship. She’s still going to the Center for Autism and Dyslexia, but for more hours at a time…and at no expense to us. I sometimes wonder how her life would be different, had we decided to give into our doubts and fear. I firmly believe we would have missed a key developmental opportunity in her life.

Although the trial of our budget has ended, I remain in a constant conflict. I’m too logical to never question, too inquisitive to never doubt. My faith is greater because I’m compelled to action in spite of my reservations. I may not believe Cailyn will be whole until the day I have this very conversation with her, but I will always give EVERYTHING to get there. In this way, my faith persists.

After all, in my theology, a miracle is where faith meets the impossible.


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Season of Change (Part 7)

In late April of 2011, I was in the middle of a huge job transition that had me traveling all over the country. For this particular trip, I flew back from Houston to Findlay on April 28th. At about 4:00 PM, I walked in the door and plopped down on the couch. Amber and Cailyn were sleeping, so I decided to get on the computer. I was only on for a few minutes before Amber got up and came into the living room.

“Honey, my water just broke.”

Our lives would never be the same after Dalton came on the early morning hours of April 29th. His biggest immediate impact within the context of “Cailyn’s Story” was as the cherry on top of a mountain of changes to her routine.

Structure and consistency had been the bonds tenuously holding everything together through Cailyn’s therapy. Children with Autism thrive on routine, because even small changes can overwhelm them with new senses and apprehensions. We found that, in order to teach Cailyn new things, we needed to keep everything else consistent. Otherwise, the wheels fell off the cart.

Apparently, my absence had already strained her to an extent. Then, while we were in the hospital her grandma and grandpa Buena watched her. Time with grandparents means fun, eating out, watching videos, and basically having your way. There is a universal rule about no crying on a grandma’s watch. There is also no structure, no discipline, and no therapy.

On the morning of April 30th, I hadn’t slept much. Amber was feeling bad and we just had a newborn baby. I decided to unwind by taking a shower in my own house for the first time in over a week. Cailyn had really acted out at the hospital the previous night, so I decided that I’d do some therapy with her while I was there.

Things were different from the start. Even some of the skills she had mastered now brought out tears. We usually introduced these easy tasks early to give her confidence, or to calm her down between more difficult activities. Now, she wouldn’t even clap or wave. She was rebelling.

She became increasingly upset and violent. She’d scream and bite herself when I asked her to sit and wait and hit herself in the face or bang her head against the table when I tried to get her to imitate an action. For a nonverbal child, this was her way to express that she missed me, while I was gone. I had been the source of all these uncomfortable changes and she wasn’t about to let me just waltz back in and try to take control.

As we got into the second hour of therapy, we were both exhausted. She was failing every trial while physically harming herself and emotionally destroying me in the process. I think she knew I was on the ropes. The next bite and subsequent scream was blood curdling. I couldn’t take it anymore.

“Cailyn!” I yelled, as I held her arms to her side. “Arms down! Do not bite!”

I bent down and put my hands to the sides of her eyes, tunneling them straight to mine. I knew she didn’t understand, but I needed her to be engaged in my monologue.

“Look at my eyes, Cailyn. I know this is hard and I know you are mad at me. We just have to get through this.” I was breaking down at the end and we went from eye contact, straight into me holding her. She was sniffling a lot and began to move her head down. I thought she was going to wipe her nose on my shirt (this happens a lot and I’m way past caring). Instead she lunged and bit straight into my chest. I literally jumped up, in a complete state of shock. I lifted my shirt and saw I was bleeding.

Not much else was said between her and I, as we took the short trip back to the hospital. I began winding down side streets, hoping that a little extra time would wipe that transparent look from my face. I was absolutely overwhelmed by the thought that this was our first morning with two children and that I may have just tasted the beginning of our new life.

I’m not really big into verbal discussions with God. It just isn’t my nature. On this day, I made an exception. I was too upset to be profound. I just remember repeating the same phrase over and over, at varying volumes to ensure He had my speakers at the proper level.

I walked back into the hospital room with Cailyn and turned to Amber. My eyes met hers and started to water, immediately. I could only muster the composure to whisper my phrase of the day, before turning into the restroom to get away from the crowd in the room.

“I can’t handle this anymore.”

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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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