Lessons in the Wilderness

It was the first day after 2012 Spring Break. Cailyn was in her car seat singing and grinning from ear to ear. Amber pulled into the school and helped her out of the car. They made their way to the door, Cailyn clumsily skipped with her tiny Dora backpack dragging on the blacktop. Amber didn’t even get to say her customary goodbyes. As soon as the door opened, Cailyn darted off to class. Her happiness was a welcomed sight after a long week of temper tantrums and time-outs. With Dalton around, preschool and ABA therapy became a release for Cailyn. She loved the routine and structure and she seemed to be thriving when she was there.

If school time was Cailyn’s release, it was a parent’s life saver. Amber no longer had the time to give Cailyn eight hours of uninterrupted, individual attention each day. It wasn’t fair to Dalton, who turned out to be so much more demanding than his sister. As we attempted to spread our efforts and time equally, our daughter’s progress slipped. When she began school full-time, things started to change. She was making real, tangible progress. What’s more, we were seeing all her accomplishments laid out in a student binder that we reviewed every day. Instead of treading water, we suddenly felt like Cailyn was moving forward again…and then break hit.

It was a perfect storm of Dalton moving around the house a lot better, finding his voice, and Cailyn being home more. The net result was all day scream-fests, violent outbursts, and a lot of crying. Cailyn was unable to focus on anything but her brother and he loved whatever attention she would give him…even if it was the bad kind. She began hitting herself and putting her hand in her dirty diapers, again. Even her sleeping was worse. She was rebelling against the change. We weren’t responding much better. Patience had run short, discipline was in great supply, and we were flailing around in vain, trying to establish a class structure to get us through. I remember laying there one night, unable to sleep. I looked over at Amber, completely defeated, and asked “How are we going to make it through summer?”

Summer came, school ended and, predictably, Cailyn’s behavior changed for the worse. During this time, my relationship with her changed. Instead of pressing focused lesson plans and charting progress, I decided to just concentrate on making her happy and having fun together. I’d get home and tickle her, give horsey rides, play games and run around with her. This was not a selfless endeavor, but my resignation to a life of Autism. I no longer had the energy to play the role of Sisyphus on my daughter’s mountain. If the boulder was going to crush me anyway, I was determined to have some joy on the ride down. I no longer had faith that anything I did mattered, and so I quit trying.

…At least that was my original intention.

One day, Cailyn and I were outside playing. She was galloping down the sidewalk like a horse and I was jogging more slowly behind. Suddenly she stopped. She turned to me, grabbed my hand, looked me square in the eyes and said “Ready, Set, Go!” She bolted off, holding my hand just tightly enough to force me to put some leg into it. She giggled excitedly as she ran and repeated the pattern, despite my best effort to explain that daddy wasn’t quite so in shape. When we came inside, I told Amber the story. What followed has been a recurring conversation in our household.

“Where did she learn that?” Amber asks, often stunned.

“Oh, she and I play that together sometimes. She must have picked it up.”

“She always imitate the things you do!”

This is just one small example. We were seeing all sorts of these changes in Cailyn. It was as if all of our efforts to teach her had been creating stress and discord (in everyone) and the “quitting” approach was actually encouraging her to interact and be a part of her surroundings.

One particularly fun-filled night I sat on Cailyn’s bed, before she went to sleep. I prayed with her and then looked her in the eyes and I saw a different look in them. She seemed so much more aware. I began talking to her, just as I would another adult. I’ll never forget the conversation.

“Cailyn, there is a part of you inside that understands me. I know things are scary and don’t always make sense. I just want you to know that, when you’re ready to tell us what you’re going through, Daddy is here. You can come to me and I’ll protect you. I’ll listen to you and make sure that you have everything you need to feel safe. I love you so much and, even if I never hear you say another word, I’m so proud of you. You’re daddy’s girl and you’re absolutely perfect.”

She never broke eye contact and, when I finished, she grabbed my face and brought it into hers and rubbed our noses together. I knew then that we were going to be okay.

It’s been a year since I left the bondage of a life, wherein my sole purpose was to fix Cailyn. Looking back on it all, I see how far she’s come. She’s become more social and aware of others, craving interaction and praise. She is communicating needs, wants, and even her emotions. She engages in pretend play and has made great strides in receptive communication, following instructions better than we imagined possible at this age. The most gratifying part is that I don’t have to look on a chart to see all of this progress…I was a participant. I’m discovering that she has these capabilities within her and I’m convinced that one day the switch will flip and she’ll confound and amaze. Not because of any specific effort we’ve made, but because she sees that we are safe.

I’m somewhere between Egypt and Canaan, so far from where I was found and an immeasurable distance from the place I hope to be. Here, the discontent and restless venture in circles, only to have their footprints filled and their bodies buried in sand. I, on the other hand, have been set free to live each day new. While I still struggle with the weight of a journey, yet to come, I’ve come to learn that time is a commodity without price. A man with an uncertain destination will leave Earth with only regrets unless he learns to find beauty and joy in the scenery.

Who knows, someday, while we’re all enjoying our time together on Cailyn’s journey, the light may just…


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A Life Less Frightening

It was a beautiful fall Saturday. Amber was working and I decided to take Cailyn to the park before a full day of football. The park nearest our house has a huge play fort made of wood. The most fun parts of it are meant for children over three but we never paid attention to that. Although Cailyn was a bit too small to climb the stairs, I always held her hand and made sure no kids ran her over.

Once we made it to the top, she’d run around, smile, and squeal. That is, until she got to the bridge. Made of wood panels, held together by metal suspension cables, it is incredibly secure but designed to sag and sway when you run across. Cailyn would run up to it, look down as if to judge the risk, and run immediately in the opposite direction.

At first, I tried to be gentle and would walk with her up to the edge, encouraging her to take a step. She always cried and screamed, so I’d relent. After a few tries, I was tired of games. I knew that she’d be fine if she just tried it once. We watched other kids run over it a few times and I finally decided she was going to do it. I began to press up behind her and gave her no room to turn around. Finally, I gave her just a final little nudge. She went to step and was doing great, until her toe caught the edge of the platform. As she fell, she put her hands down to brace her fall and she pinched her finger in the bridge.

For two and a half years at work, I went to Subway and ordered the same sandwich for lunch. I would walk across the street each morning at 11:27 AM and would be spotted by the manager. My sub was ready by the time I walked through the door. Life mirrored my meal choices, as I avoided anything uncomfortable or uncharted.

Ever since I can remember, I’ve wanted predictable, average, and safe. At a young age, I decided that my life’s dream was nothing more than a wife, two kids (hopefully a boy and girl), and a stable job to keep it all together. I recognized a career path that I thought suited me and I followed through, not because I was passionate about it, but because it seemed to maximize my potential for success. My senior year of high school, I had an assignment to write about what I would be doing in five years and it is unbelievable how closely it matched my eventual reality. Sometimes, I swear I was born for project management. When given the time, I’ll find and mitigate risk where others see smooth pavement. I’ll plan contingencies for my contingencies and find some way to control and deliver on exactly what I envisioned.

Except no one plans to have a child with Autism.

Cailyn laid on that bridge and bawled her eyes out. I’m sure some of it was the pain but the fear loomed larger. Being a father, I immediately scooped her up and held her to my chest. I insisted that she’d be fine and tried to soothe her, partially because I felt responsible in some way. As she started to calm down, I decided that there was no quitting. She had to move forward.

I don’t know the exact statistics but it sure seems like there are a lot of single parent homes impacted by Autism. The diagnosis comes with a degree of sacrifice, frustration, and fear unknown to those who haven’t dealt with it. Many times, it’s a life-long commitment. To be perfectly honest, I can’t even blame someone for being self-aware enough to know they can’t handle it. In my twenty-eighth year of life, it was the first thing to ever really and wholly “shake” me.

I remember lying in bed in the morning with my eyes closed. I’d concoct a scenario where some extent of my current existence was a dream. I’d begin to imagine that I was lying in the apartment and Amber would be beside me, still be pregnant with Cailyn. Sometimes, I’d wonder if I was still asleep on my old bachelor couch that sunk down to the floor. I’d talk myself into thinking that If I just counted to three and opened my eyes, that I could return to a different time and this dream as a way to mitigate the risk of my future…that I could hit the “reset” button. Instead, I’d see the recessed white ceiling of our bedroom.

Although Amber and I were both in the house, for a short period of time, I’d quit. My commitment and love for Amber and the kids kept me present, however I’d abandoned all hope of change. I accepted a life without progress and just decided to go through motions of normalcy, to trick myself into believing that I hadn’t colored so far out of the lines. I would spend all day playing with Cailyn and not pressing her to do anything that could result in her acting out, I would hug her when she was having good moments, walk away when she’d hurt herself, and throw on headphones when she screamed. Meanwhile Amber was doing therapy and dealing with the stress all alone.

After a few weeks of this, I remember one specific day where we had just returned from vacation and I wanted Cailyn to do some simple activities with me. With almost no notice, she flipped into a rage, started screaming, and hitting me. She went on to biting herself and even hit herself in the head. After a vacation week with almost no structure or progress, the emotions of the previous year hit the surface. I ran across the room and flipped our coffee table into the wall, breaking the table and putting a hole in the drywall. I let out a yell that went until my voice cracked, began beating my fists into our front door as hard as I could until I had no more energy, and I just sunk with my face in the corner sobbing. Amber was on the other side of the room doing the same. She wasn’t scared. I think she knew I was back; That I was willing to risk heartache to fight for my family.

I was invested, again.

The following try, Cailyn didn’t step straight onto the bridge. She sat down and scooted to the first plank. She trembled as she stood up and began to walk. Every few seconds, she’d stumble and stop immediately with her arms out to balance. Fear draped over her, but she kept moving. I watched at a distance, knowing if I were closer, my instinct would compel me to catch her. She needed to make this trip alone for her own good. With each step, she became more confident and eventually she reached the incline on the other side. Then, she slipped.

Through no virtue of my own, I’ve stumbled to the place I am, today; My footing as uncertain as the day I first read the word “Autism” on a computer screen. Doubts are frequent, frustration is plentiful, and hope sometimes fleeting but if there is anything I’ve discovered, it is that the human experience wasn’t intended to be sterile. Instead, I feel reborn into the fullness of the life God intended because of my trials, not in spite of them. It is a bridge I was too stubborn to walk of my own volition.

When we settle for a life less frightening, we deprive ourselves of the highs as well as the lows. We trade an existence of impact and meaning, for one of comfort and imprisonment. Through the gift of Cailyn, I’ve learned to appreciate every milestone, achievement, moment of clarity, and word my children speak. I’ve discovered a previously impossible well of strength in myself, a flood of admiration for my wife, and an unconditional love for my children. I no longer only exist, I now live more abundantly.

Even more importantly, I’ve discovered there are other people who need us. Individuals who, without Cailyn, would see us as too contrived and clean for credibility.

I fought my every impulse to run and grab Cailyn, as she again picked herself off the wood. She was a little shaken but didn’t cry. This time, a little girl walked over to her and started talking.

“It’s okay. Watch me!” The girl said, as she jumped down onto the bridge, wobbling quite a bit, herself. With the added excitement and motion, Cailyn suddenly decided that walking across the bridge wasn’t nearly as fun as bouncing on it. She began to laugh and scream with excitement. The little girl eventually said goodbye and walked away, smiling. As I watched her leave, I couldn’t help but wonder if she had one day fallen and pinched her fingers, as well.


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On the Workbench

I sat down at the pharmacy bench to wait the last fifteen minutes until our prescription would be ready. I checked my phone for messages, sent out a text, and looked at the time again. Barely a minute had passed. Just then, I caught someone in my peripheral vision. It was a heavy-set balding man with a dirty t-shirt and crooked glasses. He came over, set right beside me, and I caught a wind of a musty smell. I’d seen this guy around town many times and knew him to be very “different.” Just then, came the moment I was dreading; He started talking to me.

I always had tactful exit strategies for moments like this. Usually, a fake telephone call, last-second purchase, or just simply pretending I didn’t hear the first sentence. It’s not that I’m a bad person, I just don’t prefer having conversations with a stranger. Especially one who didn’t seem to grasp typical social norms. I knew that, if I didn’t immediately extract myself from this situation, I’d be knee-deep in uncomfortable and inconvenient chit chat for the next few minutes.

Then something completely unexpected took place. I turned to look at the man and my mind immediately shifted to my daughter, Cailyn. Instead of picking up my phone, we talked. Apparently, this was just the opening that he needed. He shared stories about himself and his extended family. He told me about his week and pretty much everything short of what he ate for lunch. As the minutes moved along, it became apparent that this guy didn’t get the opportunity to engage with other people very often. I started to ask questions and share some stories of my own. In that moment, I began to get emotional. I pictured Cailyn sitting next to me and thought back to the prayers of a parent, just hoping God would keep their socially awkward child from being alone. In those few minutes, he wasn’t.

Like so many others, I’m a naturally a person of self-interest. I veer into the direction of the least inconvenience and tend to avoid problems that come with interacting with others. I’ve always been good at keeping my eyes ahead, pressing towards my goal, and tuning out the world in the process. It was far easier to clear my mind by passing a few bucks to charity than to give of my time and comfort. That was before Cailyn came along. Before I caught people whispering when she would scream and bite herself. Before I witnessed Cailyn jump around and babble to a woman, who walked directly by without even a smile. It was a time where I was oblivious to a world that will acknowledge me, but completely ignore my beautiful little girl because she gets too close and stems when she tries to talk. This new revelation was a box-cutter to the heart.

Conversely, there have been a few people in our life (and we remember every one) who immediately drop to a crouched position, at eye level with Cailyn to say “hi.” They press her for eye contact and wait patiently for a response. It was this type of interaction that inspired me to develop a new habit. Now, whenever I see someone that I would typically avoid, I picture Cailyn.

One day, this came in the form of bringing coffee and remembering the birthday of a man who sold newspapers outside of a building downtown. I decided that I’d want someone to make my daughter feel special on her special day. Another day, it was simply a smile and “hi” to an extremely awkward girl, who seemed disturbed and was staring at her feet, as she walked. She seemed surprised, but her demeanor shifted as she smiled back and returned the greeting. I remember saying a prayer that someone would take the time to smile and make Cailyn feel valued in a moment she was in that condition.

I’m not telling these stories to boast. In retrospect, my interaction with individuals less fortunate than myself had been nothing short of repulsive. My human nature is judgmental, narcissistic, and apathetic. The greatest tragedy is that it took my child being diagnosed with Autism to change it. Once I began to personalize a seemingly endless sea of faces, I was able to see from the perspective of a father and a God that created each of them with value. This was a gift of immeasurable value from my three year old angel. It is the antidote to one of my greatest personality flaws and exposed a sobering truth:

The entire time I’d been trying to repair Cailyn, I was the one lying broken on the workbench.

I still get caught up in my own situations. I react poorly and lose patience more easily on Cailyn’s severe days. When they hit one of us particularly hard, Amber and I say we’re having an “Autism” day. This began as a reflection of Cailyn’s behavior but is now an indicator that I’ve lost perspective. When these moments hit, I reflect back to my view from the workbench and my prayer begins to evolve from “God, make my daughter better.” to “God, make ME better.”

Thanks to Cailyn, the work has already begun.


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The Impact of a Father (Part 2)

Over the last week, I’ve been fascinated with the concept of hereditary rule. When I first began considering the subject, I immediately dismissed it as an archaic practice and a terrible basis for government. Being born to a king doesn’t make you a king, nor should it entitle you to a kingdom. The more I’ve thought about it, however, I’ve begun to see some interesting parallels and some redeeming qualities in the “royal blood” philosophy.

Just a few weeks ago, I spoke with a man who reminded me of myself. In fact, the similarities were alarming. We talked extensively and I found us to have many of the same interests. He was engaging, intelligent, and insightful. In spite of these similarities, our lives couldn’t have landed in more opposite locations. He never stuck with a career path and had been unable to find steady work, his marriage fell apart and he has very limited contact with his children, and he is admittedly without faith or long-term hope. As we talked and traced the trajectory of our lives, I finally realized one interesting difference between us. He came from a home without a father.

“Nature versus Nurture” is an age old question, which compares and contrasts two possible developmental catalysts. Those who would argue that nature is the primary consideration in development, would suggest that a life is a sum of genetics; That personality and traits can be traced back to DNA. Alternatively, the “nurture” crowd considers an individual’s environment and experiences to be a greater factor in the molding of an individual. Reasonable people agree that it is actually a combination of the two, but disagree on the proportions.

I have what I consider to be a unique perspective on the argument. I believe that nature is who you are, but nurture defines who you become. Humans enter this world completely self-centered and survivalist. Although innocent, we are essentially myopic narcissists. Basically evil. Through a lifetime of experiences and development, most are able to relate to others while gaining perspective and empathy; traits which lead to consideration for others. This same equation applies globally. Traits which are taught and exercised, like muscles, grow. In instances where a specific trait is not practiced, nature will prevail.

By relating this theory back to the conversation I detailed, above, it becomes obvious how the lack of a stable father could so drastically change the paths of two similar personalities. The life regrets the man in my conversation shared could have been avoided through experiencing my life. Namely the impact of my father. Alternatively, it is a sobering reminder of exactly where my nature could have led me, had I been born to someone else.

My dad set an example by working as hard as he could, in a job he didn’t enjoy. He passed this onto me, and my parents forced me to honor my commitments, usually at the expense of my own desire. He demonstrated love to my mom, treated her well, and praised her…even when she wasn’t around. He taught me how to treat a woman and has held me to these standards. My parents provided me with a safety net, in which failure wasn’t catastrophic. They encouraged me to be realistic, but allowed me the freedom to choose my own path without fear of abandonment. Lastly, they showed me faith; instilling a hope in me that God would always be the path to making my tomorrow better than my today.

Males are biologically wired to be fathers but not dads. Propelled by nature to procreate, yet to also remain strong, virulent, and independent. In my own life, I’ve struggled with giving up things I love. As a husband and father I watch far fewer sports, I rarely play video games, and I don’t often go out with friends. I remember watching a college football game one day, when Cailyn came to me with her shoes, which meant she wanted to go for a walk. My nature told me to hand her a cookie and make her wait, but I decided that it was a small but important exercise in our relationship. That day, I came up with a phrase which summarizes my dad and grandfather’s legacy. It is one I will teach to my children…

“Boys live. Men sacrifice.”

I’ve learned that we must continually practice the denial of our personal ambitions and instinct for the prosperity of our family. We must consciously seek to do that which is honorable, until it becomes our reformed instinct. We must teach in actions consistent with our words and live a life worth modeling. To do otherwise will simply continue the cycle of handicapping our children, as we fail to set an example of the man our boys should become and our daughters will someday look to marry. This is the impact of a father.

Thankfully, it’s never too late to be a dad. You may have had a poor example of a father or maybe even been one, but the opportunity still exists to reconcile and use your failures as an experience to make your children better than yourself.

Being born to royalty doesn’t necessarily make you a king…

Being trained by a king can.


The Impact of a Father

I was sweaty, tired, and could barely see the rim as the night grew dark. The court was lit by a single flood light, but I wasn’t done just yet. I half-heartedly launched what I thought to be my final shot of the night. The ball bounced off the rim, down our gravel driveway and settled by our neighbors barbed wire fence. I’d just made one hundred layups on each side of the basket and I could barely summon the energy to go retrieve it.

“End on a good note.” Dad would always say.

He always demanded that we make our final shot and usually forced me to shoot from my previous miss. I can almost smell the crisp summer night air, filled with freshly cut grass. I still hear the crickets and the neighbors playing next door. This is a memory as vivid as the lunch I ate, today. If there were a single childhood moment I could relive, that would be it. To dad, it was just another night of mowing the lawn and sacrificing his free time to help me with my fundamentals. Little did he realize, these were the moments that would make an impact.

When they involved my dad, the most trivial memories became etched in stone. On Wednesday nights, I remember him driving straight to church from work and meeting us there. I always wanted to ride home with him; by myself, if I could manage it. Every ride, I’d hear about how I had no idea how much he loved me. We’d listen to the radio and talk about the most random things. While listening to baseball scores, he once asked me if I knew what a “Philly” was. He burst into laughter when I informed him that a Philly was a pretty girl.

Dad taught me how to read a baseball score while having me run Reds updates to him while he was working on the mower. When games ended, he taught me about socket wrenches and just the right place to hold a light. He let me stay up late to watch the World Series with him on school nights and didn’t make me go to bed during the countless other games I’d sneak in to watch from behind the furniture, although I’m pretty sure he knew I was there. He took me to Buckeye basketball games and we’d stay long after most fans were gone, I remember dozing off in the back seat on the way home, listening to the post game with Big Bear commercials and Carmen Ohio dancing in my mind.

We all loved going places with dad, because he liked to “spoil” us. He once bought me a Giants jacket on a business trip to New York and it instantly became the coolest thing I owned. I wore it until I was so big that I could barely button it. Another time, he called before coming home from work and asked if there was anything I wanted. Much to mom’s chagrin, he walked in the door with a new box of Legos. Often, he’d get home from work with a new pack of basketball cards, open them with me, and would talk about the players and positions. Thanks to him, pictures of Mychal Thompson, Manute Bol, Jack Sikma, and Terry Porter are burned into my mind. I could go on for hours with these random memories, each as nostalgic and meaningful as the previous.

Mothers spend the most time with their children and are primarily responsible for development. They are unquestionably the most important and simultaneously under appreciated part of the household. Mothers are ever-present and their impact is molded into lives over the course of years through routine and tradition. They methodically sand away and refine our personalities. Fathers, on the other hand, appear less frequently and make a mark in meteoric blasts that, while far less graceful, leave impact marks for life. Ironically, we try so hard to manufacture these memories through special, planned events, only to discover that the lasting moments occur with almost complete spontaneity.

At five years old, I wanted to wake up when my dad was getting ready for work. I sat in the living room, adjacent to the bathroom where he was shaving and watched the news. Suddenly, I saw a headline and ran in to inform him that the stock market dropped over 100 points (the largest number any child can fathom) and closed. He just smiled and said “Craig, the stock market closes every day.”

Not all my memories with dad were so trivial. I remember him always keeping the +/- of the score whenever I was playing sports. He always found a way to build my confidence when I was down and, even with his work and travel schedule, he NEVER missed an event in which I participated. I remember him talking to me in fourth grade about whether or not we moved. He sat me down first to tell me that he had cancer, so that I could be strong for my siblings and my mom. My dad held me in his arms during some of the most traumatic moments of my life, and has been on the end of the phone when I could barely speak for crying. He taught me the importance of a man’s name, of hard work, integrity, and in the beauty of giving to someone who is incapable of paying you back. There have been numerous times at work when I use the phrase “my dad taught me.”

Being a father myself, I often wonder what memories I will etch into the minds of my children. It’s easy to get caught up in the frustration of everyday life and forget that there are two little people watching, admiring, and imitating you. Cailyn is beginning to approach the age where I was when my memory begins to take root. With this in mind, I try to make our moments together worth remembering. I desperately want her to remember times with me, the way I do with my father. Moments where the most powerful and important man in your world, made you the center of his.

There are a mountain of statistics that prove the importance of a father’s presence in the home. Even greater is the example that a present father sets. One of the most common explanations for a girl with questionable self-image is that she has “daddy issues.” If a woman wants to know how a man will treat them when they are married, the best indicator is to watch the man’s father. My wife often tells me that I act just like my father. Sometimes it’s in reference to some of my personality quirks, but more often she refers to the way I honor and praise her, just as my father with my mother, and my grandfather with my grandmother. It’s the greatest compliment she can pay me.

My dad may not remember many the moments I’ve recounted here. The importance of these events are not that they were as meaningful to him, but that he cared enough to have them with me. Now, my duty is to pass on he and my grandfathers’ legacy, by giving of myself so that my children will one day remind me of a relatively insignificant moment of my life that they will hold onto forever with a smile. That is the true and lasting impact of a father.

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21 Grams

21 grams. This is the purported “weight of the soul,” popularized by those seeking scientific evidence that we are built of more than carbon and oxygen. It is fueled by outdated research, which suggests the body loses a small but measurable amount of weight at the moment of death. I’m not sure whether these results are methodically sound or even accurate. They neither validate nor refute my belief, as I look at my daughter and see at least 21 grams of something unexplainable.

The nuances are discernable from birth. Each child is endowed with a distinct personality, often ranging in similarity to their parents, but with a subtle quality all their own. As they grow, the symptoms of this existence begin to erode as social norms and a preoccupation with acceptance begin to wear away at the edges of individuality. Sometimes, I catch myself in this battle between youthful exuberance and acceptable behavior. I may see a high ceiling at work and subdue the urge to jump and touch it. I sometimes have to rock my leg to focus and keep from drifting into thoughts of art, music, or video games. Other times, it’s a fleeting opportunity to show kindness to another person, missed only because I took the opportunity to pause and wonder if I would appear strange.

In many individuals with special needs, these battles seem much more one-sided. Cailyn shows no inhibition when she has an urge to jump in the store. Her excited scream doesn’t have a separate volume setting for a quiet restaurant. She clumsily sprints around the block with her head down, arms waving, and is repeatedly distracted by oddly shaped leaves on the ground. Society tends to turn up their noses at this atypical behavior. I’ve even been guilty of feeling the embarrassment of being the center of the(sometimes imagined) disgust of others. Lately, however, I’ve taken on new emotions.

I feel an overwhelming sense of pride that I “get” her. Although Cailyn cannot always communicate her inner thoughts and feelings, I’ve watched her grow. I know her quirks and love them in a way most individuals will never understand. I love how visibly excited she gets over the most simplistic things, not knowing enough to suppress emotion for the sake of looking cool. I love that she runs, not for competition or exercise, but for the joy of letting out her energy and feeling the wind blow through her hair. I love that she sees the world in a fresh way, with lenses that appreciate each subtle detail of intriguing and exciting things. I sometimes wonder if Autism really creates traits or if it simply removes the filter, allowing a more “pure” image of an individual to be seen. I envy that she lives in such a carefree, joyful world and it makes me sad that so many others will be too uncomfortable to appreciate her beautiful uniqueness.

This battle with my daughter’s battle with Autism sometimes consumes me. I struggle with thoughts of regret, despair, and fear for Cailyn’s future. I’ve looked at her as afflicted for so long, that the mindset begins to taint my interaction with her. Although it sounds cliché, the more I experience the stress of a “typical” life, the more I become convinced that she has been given a gift. My purpose therefore, is not to force her to hide it for the sake of normalcy, but to teach her to use her gift to impact others and function in a world that doesn’t understand her the way I do…a world that has to be held to a flame to rediscover the 21 grams of unbridled childhood they painted over.

I know of the existence of the soul, not because a scale told me it leaves the body on death. It’s something I see every day; a quality for which chromosome rearrangement, mutation, and millennia of trial and error cannot fully account. It’s a moment of understanding in Cailyn’s eyes when we look at each other and I tell her “I love you.” It’s the suddenly confident smile on her face when I applaud an achievement. It’s the metaphysical, spiritual connection I feel when I pick my sleeping girl up, hold her heart to mine, and take her to her bed. These moments bring calm to all turmoil, speaking to my spirit that I was somehow meant for her and she for I.

I never know what challenges and emotions the next day will bring but I’m thankful for the opportunity to be the steward of such a beautiful soul. I wouldn’t have entrusted her 21 grams with anyone else.

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Flawed with Intention

I pulled my car into the campground, pulled out my bags, and began the trek to the dorm. I was now a working man and had missed previous day, so the grounds were already buzzing with people talking and playing. In the distance, I spotted a few friends and raised my arm to make sure they saw me. They began running in my direction. As they approached, it became clear that they wanted to tell me something.

“Did you hear about Ryan?”

My friend, Ryan was a rather large guy. I’m guessing about 6’6″ and probably about 235 pounds at the time. The previous night, he had been playing in a classic camp pick-up basketball game when he came down hard and rolled his ankle. Apparently, he was in massive amounts of pain and, as the swelling got worse, they decided to have someone go get a vehicle (he couldn’t walk) and drive him to the hospital.

As he laid on the bench in agony, our pastor’s son walked up to him and decided to fix the situation. He stretched his arm out to Ryan’s leg and prayed, in classic child-like fashion.

“God, make him all better…and give him some grape kool-aid.”

Although these details weren’t shared, I imagine the reaction from the group huddled around was a mixture of laughs and adoration. Everyone was probably wrapped up in that cute thing that they just saw, until something amazing happened. Ryan spoke.

“Guys…It doesn’t hurt, anymore.”

Ryan, being the practical joker that he is, would use any moment as an opportunity to get a laugh so everyone was naturally skeptical. Until, that is, he began to put weight on his foot. He stood up, walked around, and even jumped a few times before trying to restart the basketball game. Unfortunately, he couldn’t get his shoe back on over the swelling. Cooler heads prevailed, convincing him to go to the hospital, where they went through a series of tests and came out with the x-ray.

“Have you had any other problems like this, since the fracture?” the doctor asked?

Ryan looked at him, completely confused.

“I’ve never hurt this ankle, before.” he replied.

The doctor wasn’t exactly buying his story.

“That isn’t possible. I see evidence of an old fracture here. It had to have happened a while ago, because it’s healed over.”

The next day at lunch, the mess hall served grape kool-aid.

I continued going about my business as I listened to this story. I was mostly engaged, and although half sure that it was exaggerated, I was reasonably entertained. Just then, we arrived at the basketball court. I spotted a six and a half foot figure winning yet another unfair rebound battle over a smaller opponent and putting the ball back up and in. As he walked back, I noticed one foot had a sandal and sock on it instead of a tennis shoe. He caught sight of me and came jogging my way.

“Hey buddy!” Ryan called out “Did you hear the story? You’ve got to see this!”

He sat with one leg up on the bench and took off the sandal. As he began to unroll the sock, I cringed. It was horrifying. His ankle was swollen beyond recognition. I had never seen such a dark shade of purple occur naturally. Hearing about it was one thing, but the story was told when I saw him roll back up the sock and go back out to playing basketball.

Although years had gone by and the event was filed away in distant memory, the first time I heard the word “Autism” in the same sentence with my daughter’s name, I thought of Ryan’s ankle. The story kept recurring in my mind and Amber probably got tired of hearing it. For the longest time, I couldn’t make the parallel between this event and Cailyn’s struggle. Then it clicked.

It was the day Cailyn began to repeat things we said. She started saying all these words, which had seemingly come from nowhere. We were so happy, thinking we’d turned a corner. Still, I something bothered me. She couldn’t talk unless she waived her right hand up next to her face. Known as “Stemming,” this is one of a variety of repeated actions that many individuals with Autism perform to get stimulation or to concentrate on a task. In this achievement, just like every other in Cailyn’s journey, each ground-breaking success was met with another reminder that she still had a long way to go.

That is when I realized that Cailyn’s story may not involve Autism dissolving in a cloud of dust behind us. Although I would love to someday tell an entertaining tale about a girl, once diagnosed with severe Autism and then instantly completely “typical,” I’m not sure that’s our mission. I’ve reached a place of understanding, where the definition of “healed” has evolved beyond complete relief from symptoms, instead describing a process of unexplainable and supernatural conquest over them.

We are all made with scars; flawed with intention that when we succeed beyond our own capacity, our lives may have impact. The story of Ryan’s ankle would have only affected witnesses if not for the disgusting swelling and bruise. Now, it’s become a source of faith and hope for everyone who encountered him in the following weeks. Likewise, I believe Cailyn will continue to confound and amaze. She will excel in spite of her affliction but have lasting impact because of it.

Everyone has a story about their slow to talk, now completely normal relative who simply “grew out of it.” My little girl seems destined for a more powerful road and I’m okay with that.


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The Anatomy of Fear

The second day of Cailyn’s life would come to shape the next few months of mine. The nurse had come in to take some of Amber’s vitals and I was finishing up changing one of my first diapers. I finished, pulled Cailyn up to my chest and laid her head on my shoulder. Suddenly, her whole body went rigid, she threw her head back, and opened her mouth wide. I expected a cry but heard nothing.

“She’s choking!” I yelled to the nurse. “Help!”

The nurse casually walked over and explained how sometimes new babies get mucus caught in their throat. She started to demonstrate the process of clearing out a babies throat, when she raised her eyes with a very uneasy look.

“Hit the red emergency button.”

I was too shaken to find the right button, I was pressing everything in sight. I was in my socks and slipping all over the floor, running back and forth trying to process what was happening. I slid out of the room, into the lobby and just yelled as loud as I could.

“Someone please help! My daughter isn’t breathing!”

I came back in with a few nurses closely behind. They worked on Cailyn and I watched Amber, who sat there in stunned silence. She was obviously scared out of her mind, but bed-ridden and powerless to help. Finally, they cleared Cailyn’s throat, but her lips had begun to turn blue. They gave her oxygen and assured us that she was okay. Amber and I were emotionally drained, relieved, but simultaneously very fearful. My next question was simple.

“Could this happen again?”

Life as a well-employed bachelor was easy. I remember playing video games for a few hours on end after work, driving the “long way” with my windows down on cool summer nights, pulling through Taco Bell for dinner, and getting back to the apartment just in time to watch a baseball game or movie. In those days, I’d get a call from some friends wanting to hang out and I’d be up for it…immediately. I drove fast, I played hard, I ate poorly, I thought I controlled everything, and I feared nothing.

Anyone with kids can write the next paragraph. Children change everything. Cailyn’s bassinet didn’t leave our bedside for the first few months. Every time she made a noise, we jumped up to check on her. When she finally went to her own room, we put the baby monitor as close to her face as possible and jacked up the volume. We were almost caricatures of ourselves; A new breed of hyper-paranoid, obsessive compulsive, anxiety overridden parents on steroids. For months, we worried about everything from her appetite to her sleeping position and the consistency of her poop.

The anxiety doesn’t stop after infancy. We live in a sick world. One where you have to keep your child next to you in all public places. You begin to drill scenarios into their head by teaching them not to talk to strangers and to always look both ways before crossing the street. That evolves into discussions about friends and bullies, cars, dances, dating, college, money, etc. This continues, even when your children are grown and restart this cycle with a child of their own.

My fears underwent reconstruction with Cailyn’s diagnosis. She didn’t understand the concept of a stranger and, at the time, couldn’t cry for help even if she did. In the news, we were beginning to see stories of teachers joining with bullies in abuse of children with Autism. We began living with the reality that Cailyn may live her entire life with a different aptitude for the world around her. I resigned myself to this possibility and decided to dedicate myself to taking care of her and making her life as happy as possible. That’s when the real fear rose up in my mind. Someday, I would die. Cailyn would be without me. She may not have anyone to protect her, provide for her, love her, or understand just how awesome and beautiful she is. This became my biggest fear and the subject of many of my prayers.

Just a few weeks ago, my dad informed me of a special “healing” service his church was having. He said that everyone was fasting (giving up) something they loved and using that time to pray for an individual, in whom they wanted to see a miracle. I’m naturally a skeptic about all things “miracle.” It’s just my logical, scientific, cautious nature. In many ways, I believe this to be a defense mechanism to prevent myself from being let down. To supplement this ever present doubt, I decided I needed to completely dedicate myself to this endeavor. That made my fasting choices easy: I decided on soda, salt, and bacon. Anyone who knows me, understands the level of sacrifice involved.

During the first week of the fast, I discovered that I had “Stage 1” high blood pressure. With my family history and sedentary, yet often stressful job, blood pressure issues at thirty years old is a potentially huge early warning sign. Coincidentally, I’d already pledged to give up the things in my diet that most contributed to my health issues. It was interesting that I never had the discipline to eat right on my own but, since this was something I had promised to do for Cailyn, I held firm. It was a step I couldn’t have taken of my own volition, but required a greater purpose. Slowly, my blood pressure fell and is approaching “high-normal” levels. It seemed as though the healing had already begun…and it wasn’t all physical.

We instinctively fret the unknown, different, and uncontrollable. However ridiculous or improbable the anxiety might be, it doesn’t become less real. The anatomy of fear is such that it is completely confined to our mind and should be at our mercy, yet it imprisons us. There are times that we need reassurance that we don’t fight these battles by the strength of our own hands. Whether it be with the fear of my own mortality or of Cailyn never being “healed,” I’ve learned it best to plan for the future, live in the now, and leave my anxiety in bigger hands. This week I was blessed enough to receive a subtle reminder that the ravens are still being fed and life is so much more uncertain when left to my comprehension and control.


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Statistical Impossibilities

I remember sitting at the mall and watching the kids play with each other. They ran in Cailyn’s area a few times and appeared to be around the same age as her. They chased each other around the slide and over to the miniature house. I saw them peeking out the windows at each other and laughing. Cailyn walked over to the bead maze and pulled at the wiring. It made an annoying metallic rattling sound, which she apparently found amusing. I was done.

“Come on, Cailyn. We’re done playing, now.” I said, walking towards her with my hand outstretched. She grabbed it and followed me, as usual, without a word. On the way out, we saw young kids everywhere. To the left, a little girl asking her mom for a cookie. On the right, a young boy sitting patiently on a bench and talking with his dad. As I put Cailyn into the car, a family just down the row was walking in. The father was holding his crying little girl and he promised if she was good, he’d get her something. She smiled back at him.

We use benchmarks everywhere in life, often without intent and sometimes without knowledge. We define ourselves using comparisons to others and can’t help but feel validated when our number rises over the 50th percentile. We live in a world of hierarchies, salary scales, grade point averages, conference standings, friend counts, and SAT scores. With time and immersion into this culture, our self-worth becomes defined less by our individual achievements and more by how that compares to our peers. We begin to subconsciously (and often erroneously) define “normal,” only to be disappointed when we don’t attain that standard. This fictional, sometimes faceless enemy manifests itself in many ways, driving fathers to overwork, pushing young women to eating disorders, and generally resulting in levels of depression.

Comparing Cailyn to other children began with the purest of intentions. I wanted to track her milestones so that I could make sure she was on track to be successful. Once she started to fall behind, I began that slow spiral downward. It started with a healthy concern for her, but slid to jealousy, resentment, and anger. These emotions welled up to varying degrees whenever I saw children interacting “normally” with their families. I remember being so ashamed of having these emotions. I love my daughter far more than life, itself, and I’d never trade her for anything. Still, I couldn’t stop the feelings from creeping in. The only way to contain them was to withdraw completely.

I anticipated that comparisons would fade away in the world of Autism, but I found the classifications still existed. The Autism “Spectrum,” includes not only severe cases, such as Cailyn, but also moderate and high-functioning individuals. It even includes children, who are not even classified as having “Autism.” Others have almost unnoticeable symptoms. When Cailyn received her diagnosis, one of the first things I did was look up other children with that diagnosis, to try to establish a baseline for what we should expect for her progress.

When you talk to other parents dealing with Autism, the subject of diagnosis always comes up. We obviously want to know severity, symptoms, and treatments. Secretly, I always wanted to hear that Cailyn didn’t belong there. It seems sick, now, but there was a time where I’d observe other Autistic children and look for ways that Cailyn was ahead. I think I was reaching for a small ray of hope that she wasn’t as severe as the doctor said, or even that she was breaking free of the condition. With older children, it was also a good way to see what we could expect for the future. I was already setting standards for her, years in advance.

Eventually, I had a personal breakthrough. I began looking more closely and soon realized that, without exception, there are no perfect comparisons of children with Autism. For that matter, there are no perfect comparisons between any two children. This has never been more evident than with Cailyn and Dalton who, although they come from the same parents, could not be more opposite. Yet, in spite of these differences, each has my complete and equal love and pride.

Even with the exact same parents, a new baby has approximately a one in four trillion chance of being born with a identical significant genetic makeup. That’s excluding an infinitesimal number of potential genetic mutations. The beauty of this complete uniqueness is that it gives us an opportunity to operate independently of expectations set by others. It allows us to pursue success, defined by pride in our own achievements and not solely on a comparison to others. It breaks Cailyn free of the fate of other children, who just happen to have shared similar symptoms. It also provides me with an escape from my preconceptions of what my child would be, focusing instead on who she is.

Although man searches for structure, consistency, and control, God shines through in helplessness and chaos. If not for Cailyn, who is just one of the Earth’s seven billion statistical impossibilities, I may have missed the point. She is extraordinary as a result of her traits and not in spite of them. Her future is exciting due to the fact that it’s yet to be written. Most importantly, the true beauty of a relationship is diminished amidst the gray canvas of the “typical.” The bond that Cailyn and I share is significant because it is completely and erratically unique.


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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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