Monthly Archives: February 2012

A Twist of Grace

I finished my conversation with the doctor, hung up the phone and just stared at my desk and chewed at my nails. I started to dial Amber several times, but never hit send. I couldn’t bring myself to tell her. I couldn’t hold my composure, anyway. My mind was moving too fast. I had to think about how I was going to break this news.

I walked in the house and heard the faint sound of the shower. Cailyn was napping and Amber was just getting to relax. I knew that was a symptom of a rough day of therapy. I tip toed through the hall and into our bathroom.

“Honey,” I said, slightly startling her in the process “I talked to the doctor, today. Our results came in.”

She slid the door open a crack and looked at me. I think my face told the story, but I continued.

“The mutation they found in Cailyn’s genes…” I paused, looked at the floor, and took a deep breath. “They found the same abnormality in your DNA.”

She looked like she wanted to say something back, but just began sobbing. I jumped towards her just in time, as her knees began to buckle. I caught her and lowered her to the seat in the shower. She just sat there weeping with her head in her hands.

I can’t tell you the number of times I’ve held my daughter and apologized. How I felt that I had let her down and was, to some extent, culpable for the battles she would face. I felt responsible for not researching vaccines enough, for wrestling with her too much, for letting her watch TV too long while Amber was at work, for not getting her around other children, and for not pressing for an emergency c-section during her traumatic birth. I wondered if the trigger could be the food and water I gave her, the house I chose, or the bright, loud toys that I bought her.

Guilt is the terrorist of an Autism diagnosis. No one knows what causes Autism, but we know it is part genetic and part environment. In a parent’s mind, that translates to “I’m to blame.” In the heat of a tantrum, sweat pours down your forehead and your heart beats to the words “your fault…your fault…your fault.” Every time you watch her in a corner, a part of you wonders if you put her there. You watch her struggle with other children and you tell yourself you’d do anything to make up for your mistakes. You just want her life to be easier. She deserves so much better.

The truly dangerous part of guilt is that it breeds and forms a downward spiral to pity and depression. Every moment spent dwelling on an unchangeable past, distracts from a fragile present. Regret prevents progress, which spawns future regret. This isn’t a unique feeling for families fighting Autism. It creeps up everywhere in life, which is why I feel like I have to share what I’ve learned from this battle.

I’ve found to overcome guilt, I have to first remind myself that I have done everything possible for my family given my knowledge and ability. Second, I commit to the mindset that some things in life are out of my control and Cailyn’s life is meant for more than just my comfort. Lastly, I have to admit to making mistakes and use it as motivation to move forward. By giving my present self completely to my family and pushing Cailyn to be more than what others expect, I live today in a way that will make me proud 5 and 10 years from now.

We’d later see a geneticist, only to be informed that Cailyn and Amber’s specific genetic mutations were of little to no significance. In hindsight, it wouldn’t have mattered. Parents aren’t perfect, be it in action or DNA strands. We don’t need to be. Our course is plotted, not by a single event, but by a lifetime of commitment to the present and a twist of grace. This realization is what puts me to sleep at night and lifts me from bed in the morning.

Someday, you will see the evidence of this in Cailyn.


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…of Flesh and Blood

It was a morning like any other. I woke early and carefully went about my routine, quietly slipping out of the door to avoid waking my family. As I approached the top of my station, the sun began to peek over the stone wall. The shadow it cast grew shorter, until I began to catch it’s glare from the helmets of the other guards, positioned further down the walkway.

Our’s was a mighty fortress, built generations ago by our ancestors and proudly protected by my father and grandfather, before me. As time went by, our adversaries seemingly moved on to more attainable targets. Our walls were firm and life became predictable, consistent, safe.

In these moments, I would often gaze over the distant cliff, watching the glimmering water rise up and crash against our shore. I would pass time by thinking of my wife, young daughter and the child we were anticipating. Suddenly, my daydream was interrupted by an unfamiliar sight. There was smoke beginning to build over the rocks. The black cloud grew and started to move. I shielded by eyes, as a fleet of burning vessels began to emerge, floating out to sea.

A crowd began to gather around my station, shocked at what they saw. There had been rumors of a great invading army, a destructive league of barbarians that sought to conquer, occupy, and kill. It soon became apparent that the legend of distant lands had now arrived at my doorstep. The burning ships grew greater by the minute and it became apparent that these invaders would not be retreating. We had a battle awaiting.

I instructed another to sound the alarm, as I ran across the village to warn my family. I threw open the door to find my wife sitting there, holding my daughter’s head to her chest. She looked into my eyes, resigned to the actions I would have to take. I kissed their foreheads and darted out, without a word. The horns grew louder and archers began to fire over the walls, signaling an approaching force. I ran from door to door, gathering others to help me fight. We had amassed a large group of heavily armed combatants by the time we arrived at the gate, which was already under siege by the opposition.

We held fast for a time, when we began to spot other ships arriving in the distance. We were already cut off from supplies. We were beginning to grow hungry and were down to just a few boxes of arrows. Once the enemy realized our position, they would break through and we’d be destroyed. In desperation, I penned a note to the King. I explained that we were in a critical situation and had overestimated our ability to handle it alone. We needed urgent reinforcements and supplies. I handed the note to a messenger and sent him out under the cover of darkness. This was our last hope.

The invading troops camped inside the forest and plotted their next move. The next two days were filled with brief, small scale attacks to keep us off guard, tired, and to test our capabilities. Finally, we were left with no more arrows. When we stopped firing, one of our attackers let out a scream and the entire army came flooding out of the trees.

In the days of intense battle, I thought about our message frequently. I wondered if the King would choose to help. I sometimes wondered if He’d even received the note. It seemed that I hadn’t ate for days. I took continuous shifts fighting over the wall and at the gate. Although we had cycles of rest, I would just lie there and ponder what our life had become. There were no more thoughts of the future, only of the fragility and mounting hopelessness of today.

Both sides had taken heavy casualties, but it was becoming more obvious to me that our fortress couldn’t hold much longer. At first, my men and I would easily strike down all on comers. Now there were too many scaling the wall, too many pouring into the gate, too many of our own dying. In those moments, only my family kept me fighting. It seemed my answer had come. There were going to be no reinforcements, no supplies, and no King.

The thought enraged me and I began fighting like a madman, swinging my sword uncontrollably and looking in vain to end the entire ordeal one way or the other. I took out quite a few when, in my haste I overextended myself and was caught by surprise. I was hit to the ground with my face in the dirt. I began to get up, when I saw my enemy eye to eye, standing over me. I was resigned to my fate, understanding this was a battle I wasn’t prepared to win.

Then, I heard the sound of another horn. It was deafening and resolute. In that moment, both sides stopped and turned. In the distance, I could see our messenger riding at full speed with his arm triumphantly raised over his head. Behind him, a sea of soldiers.

The entire time I’d been fighting and losing faith, the answer was already on it’s way.

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Through a Glass, Darkly

Cailyn and I were sitting on a bench, watching kids run back and forth on the playground. She sat perfectly still and her head followed the movements of a few of the kids. She turned her head up to me and looked me straight in the eyes as I spoke.

“Cailyn, do you want to go play with the other kids?” I asked.

“No, thank you, Dad. I want to stay with you.” was her reply.

We sat there for a few minutes and, although I don’t remember the exact conversation, we talked, joked and laughed. These talks usually ended with me telling her how proud I was of her and she always ended with “I love you.” Then the sound of loud music would startle me. I opened my eyes to the familiar green glowing numbers on my clock. I just sighed. Six o’clock. Time to get ready for work.

I’ve always remembered my dreams. Like everyone else, they run the gambit from horrifying to downright stupid. They’ve always been breathtakingly realistic, however. So much so, that I’ve had trouble drawing the lines of where they began and ended. I even have those “déjà vu” moments, where a scene of my real life lines up exactly the way a previous dream did. It only lasts for a few seconds, until actual events begin to slightly deviate from the path of my dream and the feeling suddenly drops.

Since the day that Amber tied a yellow pair of baby boots around the steering wheel of my car, I’ve had two significant recurring occurrences in my dreams.

In the first, I realize during the dream that I have a loose tooth or several loose teeth. I spend the rest of the dream fighting to maintain a normal lifestyle as the tooth gets worse. It begins shifting dramatically, until it falls out and I’m left staring at it in my hand. It’s always a prominent tooth and I know that everyone is going to notice.

The second are conversations with Cailyn. There are a few variables to them. They started just before she was born. Sometimes she is older than in real life. Other times, she is the same age. Sometimes I’m shocked that she’s talking so clearly and, in others, we just continue the discussion as if we were old friends. What remains consistent is that she speaks in full sentences and has perfect, plain speech.

I’ve told Amber many times about both of these dream scenarios. Shortly after they began occurring, I tried to look up meanings, online. Unsurprisingly, consistent dreams about losing teeth are supposed to represent a paralyzing fear of not having control. When you are losing a tooth, there is really very little you can do about it and it begins to guide your actions and thoughts. It’s the ultimate subconscious metaphor for a real-life fear.

I was less successful in finding information about the root of my dreams of Cailyn speaking. That is, until she began to get older and the speech never came. Increasingly, the dreams began to make me sad and even angry. I felt taunted by some interaction that I was being robbed of. It was like I was looking through the window of an alternate reality, where my life was once headed until it began to deviate off course. I surmised that the dreams began as moments I most looked forward to, and they became the moments that I most feared never obtaining.

A few times, in dark moments shared between only Amber and I, I would share the mounting resentment. More than anything else, I wanted my daughter to be able to tell me that she loved me. I selfishly wanted a conversation between she and I. I wanted to know what her voice really sounded like. They are things, for which you never anticipate longing, they are hammered into your mind every time you see another child interact with their parent, they stab you in the chest every time you hear another adult reference their child talking “too much.”

I remember the last dream of her conversing with me. I was in New York, away from my family for a week. That night I dreamed of a conversation that I had with Cailyn. All I remember about it was that she looked me in the eyes the whole time and I was focused on the little brown “freckle” in her eye. A few days later, I would come home and she would sing “Somewhere, over the rainbow” to me. Apparently, my subconscious was calmed because the dream I had at least a dozen times before has never returned,

I still have the “déjà vu” moments, however. One of these events, which inspired me to write this post, occurred on my 30th birthday. I got Cailyn out of the shower and wrapped her in a towel. I held her, cradled like a baby, as I often do. She just sang along with a random song that was playing on the iPad when, all of the sudden, she stopped and stared right into my eyes. It must have been for at least thirty seconds. I saw the little freckle in her eye, imagined hearing her voice speaking to me, and started to tear up a bit.

“Cailyn” I said “I’m so proud of you. Daddy kiss?”

She gave me her cheek and said “I yub you.”

I told Amber that it was Cailyn’s birthday gift to me. Maybe the best I’ve ever received.

These moments come and go, as we lose control and Autism forces our world down a different path. Someday, however, I believe that my dream world and reality will be on roads that converge into one and the same. For, today, I see that little girl through a glass, darkly. Someday, I’ll see her face to face.


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A Picture’s Worth

I’d like to apologize for lying to each and every one of you…and to myself.

Our video and picture library of Cailyn is substantial. We were the crazy parents that bought a video camera just months before her birth and documented everything. Recently, I was looking back on old videos and paying close attention to the dates for purposes of benchmarking with Dalton. I was astounded and embarrassed to discover a pattern in our documentation.

Just prior to the Autism diagnosis, the videos stopped.

People take pictures and videos at a lot of events. Weddings, graduations, and holidays are great examples of things that we want to remember and document. We dress everyone up, take multiple shots, pick the best, and then touch it up. When looking through a scrapbook, you don’t usually find images of a divorce hearing or at a funeral. People don’t hang “D minus” papers on the fridge, because it’s a time, event, or feeling that we aren’t looking to remember.

It wasn’t a lack of pride that led to us putting down the camera. We could never lose pride in our children. The true motive was an aversion to remembering a time of deep depression that we were never fully confident we’d be able to leave behind.

The gap in videos and photos didn’t last forever. It went off and on in spurts. It’s relatively easy to see why we documented the things we did. Typically, Cailyn was interacting well and doing something that gave us hope. Each time that we brought out the camera, our spirit was silently rooting for this to be video evidence of a breakthrough moment.The gaps are harder to piece together. Based of dates, emails, Facebook posts, tweets, etc. I can sometimes recall specific moments or feelings that I subconsciously tried to erase from remembrance.

I hadn’t really looked through those memories in awhile. I used to browse that library all the time. The first time I took a stroll through memory lane following the Autism diagnosis, it was just too hard to continue. I saw the sparkle in the eyes of Amber and I playing with Cailyn. We were just kids; so enthusiastic and blissfully ignorant to the reality that life had awaiting us. I hated the happy me. When I looked back to compare Cailyn’s progress, it still didn’t make me feel better. We had documented great moments in the midst of turmoil and had selectively chosen how we’d remember that time in the future. It made the present seem so much more daunting.

You see, a picture is usually worthless. We use them to lie to each other and to ourselves. On Facebook, you get to see the video of Cailyn doing something new for the first time. You watch her dressed up in a brand new outfit for the last time that she’ll wear it without a stain. Of the fifty pictures we take, you’ll see the only one that we could get her to look at the camera and trick her into a smile.

A big reason that I felt it was necessary to do this blog was to not only show Cailyn’s progress, but to document how truly outstanding her gains have been in spite of the battles we’ve faced. Maybe even more importantly, I want this to serve as an alter of remembrance in our future. When we look back during a bad day, we’ll be reminded that we’d faced and overcome the giants in our past. When we have a good day, we’ll have an objective measurement and another reason to be thankful.

Life is full of mountains and valleys. We experience both in our average week. Regardless of how bad things get, I can look back at all of our old pictures and videos now. There is still some pain in watching those naive kids, but now Cailyn’s worst days run circles around the “good” moments that we had chosen to remember. We’ve also taken on the challenge of documenting our “real” moments. By being more transparent with our battles, we give ourselves opportunities to learn and to give hope to someone else.

Then what is a picture’s worth?

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Dancing With Cailyn

Every father with a daughter understands the almost supernatural pull that his little girl has on him. She holds in her fragile hands, the capability to crush or lift his spirit. She can make a grown man smile or cry…and sometimes both.

I remember long nights, taking careful steps up and down our hardwood floor as Cailyn laid with her head on my shoulder. She had digestion issues from birth and her “colic” would prevent her from going to sleep on her own for much of her infancy. This meant that I needed to walk, bounce, and hum to her ever so slightly for as long as an hour at a time. These were our first dances.

Eventually, we found that Cailyn slept on my chest better than anywhere else, which was fine with me. The only problem was that she had to be “walked” until she was totally asleep. She’d begin crying if I sat down a moment before she’d slipped away. At just a few months old, we could tell when she was asleep because she had begun to hum with me as we moved back and forth in the kitchen.

As I understand it, dependency on a person for sleep is one of the cardinal parent mistakes, outlined somewhere in chapter one of some imaginary manual. I felt, at the time, that I had justification for my actions and I really enjoyed the closeness. It creates a different bond…and may have been the best decision of my life.

You see, Cailyn was classified with “severe” Autism and, in case you’re unfamiliar with common symptoms of the condition, she would be likely to have a strong aversion to human contact.

If you’ve ever watched Cailyn and I interact, you would know the opposite to be true. If I’m laying on the ground, she’s going to jump on me and start to wrestle with me. Before bed, she wants to be tickled and expects “butterfly kisses” and “noozles” to be given liberally. Many times, when I kiss her and begin to pull away, she grabs my face and pulls my lips back to her cheek.

When I list things for which I’m thankful, this places at the top of the list. I honestly don’t know that I could survive this with a daughter that didn’t want closeness with me.

…and then there is the dance.

When she began to go to sleep on her own, the dancing began to happen during songs and at the end of movies. We’d watch something that would inevitably have music during the credits. I’d look at her and say “dance” and watch her eyes light up and she’d smile as she raised her arms to me. To a large extent, there is a lot of silliness in our dancing. She get’s thrown, dipped, spun, and flipped until we’re both worn out. It always ends in the familiar position of her head on my shoulder, with one of my arms supporting her weight and the other one holding her tightly.

We’d recently found a new dance song at the end of a VeggieTales video when the diagnosis came. “Beautiful” by Nichole Nordeman took on a different meaning, one night while Amber was at work. I just remember looking up videos of children with Autism, on the laptop as her video drew to a close. It was devastating to wonder if Cailyn would ever be capable of the father/daughter exchanges that I so anticipated. My concentration was broke when she came over to get my attention. I picked her up, but wasn’t in the frame of mind to be silly. She apparently wasn’t either because she immediately dropped her head to my shoulder.

It started with just me holding her, until the words started to get to me. As we rocked back and forth, I held her more tightly. I began to pray over her, which led to tears and a full blown cry. I began praying out loud. I’m sure I promised God everything I had by the end of that song. If so, I meant it. In return, I got just enough to make it to the next day. Cailyn pulled back and looked at my eyes. She must have noticed that things were different, because she touched the stream on my cheek and just smiled. I couldn’t help but smile back. The moments weren’t going to be what I always envisioned, but they would still tug at my heart.

We still dance. Although sometimes our current situation takes over the context of the song and I find myself emotional, it’s usually a great escape. In our dancing moments, it’s just her and I. All the worries of work and the world fade away. When I hold my baby girl, it feels like she’s a newborn again and I’m just walking her through the kitchen before bed. It’s a feeling of a more innocent and naive time. A place where Autism didn’t exist,

Dancing with Cailyn, after all, shouldn’t be possible.

Cinderella – Steven Curtis Chapman

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Dalton Christopher

It was a terrible week. I’d been up working for 28 of the previous 33 hours and had just missed my first Ohio State football game in almost a decade. As I get home, I receive a call from mom. She said that Grandpa was very ill and in the hospital. Amber and I immediately left to see him. I held Cailyn as we were walking through the parking lot.

“I can barely keep my eyes open. I need some coffee. Do you want some?” I asked.
“No thanks. I’m staying away from caffeine.” Was her response, which shouldn’t have been strange at all. Except, something was off in the way she said it.
“Are you pregnant?” I said, halfway joking.
Her smile stopped me dead in my tracks.

We had tried to plan it all, years earlier. We’d have a girl, first. Next, we hoped to have a boy around the time that his sister would be out of diapers, able to listen to instructions, and help out with little brother. Autism wasn’t in the plan, but part two had already been set into motion just weeks prior to the epiphany that rocked our lives. Had Amber and I stuck to the 18 month planned evaluation for Cailyn, thoughts of a second child would have surely been postponed.

After we got our head around Cailyn’s condition, our next thought went to the person developing inside Amber. Would having another child be fair to Cailyn? We were going to lose the ability to give her the one-on-one attention she so desperately needed. How would this affect the new baby? It seemed unfair all around. Then came the question that would haunt us for the foreseeable future…

“Would our second child have Autism too?”

In retrospect, it’s one of my most hideous mistakes. One of the most beautiful and healthily apprehensive periods of a couple’s life are the nine months leading to the birth of their baby. Autism was a vacuum, sucking out the joy of this pregnancy and filling the space with our pitiful efforts to control something, anything in our life.

Then we heard the phrase “It’s a boy.”

Autism may affect approximately 1 in every 110 children but, according to a recent Autism Speaks study, a boy with an older Autistic sibling has a 1 in 4 chance of also bearing the affliction.

We concocted what I refer to as the “Constanza Plan,” based on an episode of Seinfeld, where George found success by doing everything opposite of his first instinct. We knew genetics played a role in Autism, but we also knew environment was a factor. By reversing our approach on even the most trivial guilts (a subject for another day) we held onto from Cailyn’s pregnancy and infancy, perhaps we could avoid Autism the second time around.

In hindsight, I’m convinced that our efforts were frivolous.

Although the same blood runs through them, Dalton is the polar opposite of his sister. This is true in everything from looks, to their personality, development, and even preferences. Where Cailyn was independent and content, he is needy and a bit of a whiner. Where his sister was distant and somewhat cold, Dalton is warm and in your space. Cailyn was active and advanced in her gross motor movements whereas Dalton is a lazy lump of boy, but he sure loves social interaction.

You see, God was gracious enough to humor me in this answer to my prayers. If I couldn’t escape the prison of worry that I built up in my mind, He’d crumble the walls around me. I didn’t have the ability to impartially assess the weight of similarities between my children, so He created them entirely different. I couldn’t have loved another Cailyn to the extent that I love her. So, I was gifted a son that gave me every opportunity to love him in very unique, yet completely equal ways.

Dalton may yet acquire the diagnosis of his sister. In his infancy, however, I’ve been given a precious gift. I’ve had an opportunity to repair a regret in my life, and get a second chance for time with my son that has been almost completely void of the demons that tormented me while he was being formed in his mother’s womb.

He and I are taking every advantage of that opportunity.


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The End of the Beginning (Part 9)

Cailyn always sang. Usually, it was some repeating nonsensical phrase set to the lowering and raising of her pitch. During the summer of 2011, these songs became recognizable. We began noticing her singing songs that we forgot we’d sung to her as a child. We started testing how far back her memory went, by starting an old song and letting her insert the correct word. She was remembering things we hadn’t sang in months.

It didn’t stop there. Amber and I decided to try to get her to begin telling us what she wanted. We started by selecting two items that she knew and would have her say the name of the one she wanted. For awhile, she’d always choose the last option. For instance, If I said “Cailyn, do you want a strawberry or blueberry?” She’d always respond “blueberry.” We got a little smarter and began giving her an option between things like juice and daddy’s sock. Eventually, she learned to tell us what she really wanted.

This activity evolved into her asking for an item in our hand without being prompted. Soon she was coming to get one of us, grabbing our hand, taking us to the item we wanted, and saying the name of the item. When we set up her first goals with Ohio “Help Me Grow”, we said that our dream was that she could tell us what she wanted. This dream was becoming a reality.

To get some additional structure in her life, Amber and I decided to take Cailyn to school early. We felt that she’d benefit from extra therapy and experience with other children. We had heard wonderful things about the Findlay Center for Autism and Dyslexia, so we decided to take her for two hours a day. This wasn’t covered by insurance and it was all we could afford. We just wanted to make it to Cailyn’s third birthday, when her IEP would kick in and we’d no longer have to pay out of pocket.

Cailyn’s progress at school was great but, more importantly, she enjoyed being there. It was unbelievable to see her so attached to these teachers and to read her progress reports. This interaction began to bleed into her home life, where other people began to notice the difference in Cailyn’s interactions with them. She was a long way from where she should be, but even further from where she had been.

We began seeing a licensed pediatrician, who was also a DAN (Defeat Autism Now) doctor. We were looking for additional tips to build on Cailyn’s recent growth. To find one of these doctors who was covered by my insurance, we’d have to travel to Columbus. We gave it a shot and found it worth the trip. We were told to expand Cailyn’s diet to exclude dairy and artificial dyes. We were also prescribed B12, probiotics, omega 3 supplements, specific spices, and were asked to give her a mild laxative for a short amount of time. Cailyn’s digestion was apparently a contributing factor to her irritability, and she began to improve drastically when these steps were implemented.

It started with pushing cars and busses on the floor or couch, while she sang “Wheels on the Bus.” She previously had a fascination with wheels that made it impossible to get her to play correctly with cars. She also began making animals walk and she would mimic their sounds. We even caught her putting Woody (Toy Story) on his horse “Bullseye” and making him ride around the living room. She was beginning pretend play!

One day, while playing with a Christmas gift (correctly, I might add) we got another amazing moment on camera and shared it with the Facebook world. 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.” She has now begun to consistently string words together. She’s asking for things with sentences, instead of with a single word. She began school, today, and we’re expecting even more.

Parents of “typical” children press for consistent behavior whereas parents of Autistic children live for what I call “windows.” Windows are glimpses into your child, where you see the potential that they possess beyond their current abilities. Windows allow you to gaze, ever so briefly, at what life would have been like on the other side and it brings hope of that life still being attainable.

I’ve seen into the window of Cailyn. I looked straight into the eyes of someone that cannot be reduced to a diagnosis or held down by a statistic. Though Cailyn has some good days and some absolutely horrifying weeks, we have this hope; That at any moment, she may break out of her box just enough to share herself with us. We’ve reached the end of the beginning and the next chapter is the first step to her conquest.

The irony is that all along I thought I needed control so that I could fix her. As it turned out, I needed to lose control so that she could fix me.

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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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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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