Why I Left Social Media


Believe it or not, I’m not here.

You’ve stumbled upon the meager remains of a once thriving social media profile. I buried everything I could. Alas, digital footprints are like spiderwebs and they cling to every dark recess of the cellar. Facebook is especially nefarious because it’s required for technologies I want to retain. It is another one of social media’s insidious strategies for world domination.

So as a massive digital middle-finger to the social network that wreaked havoc on my mental health, I’ve decided to leave this; a monument to my exit.

Ten reasons I left social media.

1. Social media warps our expectations

Social media is now the primary repository for daily content generated by billions of people. This mountain of information competes for attention, ensuring only the extreme (good, bad, or just weird) rises to our timeline. We’re flooded with around-the-clock access to the most elite human talent, knowledge, and beauty available. This content litters our news feed, simultaneously entertaining us and reminding us just how unexceptional we are. It also sets a new and wholly unrealistic bar for “success.”

Before the internet, humans had social circles of a few hundred people, which meant nearly everyone was elite at SOMETHING in their community. In these small groups, each of us were known for something, could earn praise for something, had a trait or talent our friends admired, or achieved a measurement of success amongst our peers.

In contrast, today we live in an unprecedented age of interconnection. We boast “friends” lists in the thousands, amongst which we’re easily lost in a pea-green mush of unexceptional, unsharable, and unenviable “average.” No matter what hobbies I pursue, no matter how hard I try, social media let’s me watch myself through the demoralizing lens of the world’s greatest.

Social media haunts the perfectionist in me. I allowed it to set standards of success I could never match. It made me likely to throw out the things I tried and often dissuaded me from even making attempts. Social media encouraged me to settle for observing instead of doing.

2. Social media is inauthentic

When humans feel unexceptional and insufficient, we bend our image to be more acceptable to others. We don a mask, put on a show, and curate the best version of ourselves for the world to love. We “fake it until we make it.”

I often watch in amazement as people huddle together to take dozens of pictures from every conceivable arms-length angle. Once complete, the camera’s owner moves into post-processing mode. They painfully choose their most flattering picture; piling on layers of face-clearing, hair-patching, eye-brightening, and glittery filters, which serve to mask their deepest unspoken insecurities.

On social media, you’ll find mostly mountains of similarly curated moments; the best of the best moments of a person’s life. You’ll find the only picture where the kids weren’t crying, where the legs were crossed perfectly to look thinner, with lips jutted to the “goldilocks zone” of pouty, JUST before everyone got sunburnt on the beach and had to wash sand out of their butt.

You’ll never see the huge argument with their spouse posted, the angle of dirty laundry in the corner, or a video of that monumental overreaction to their kids’ mess earlier in the day. You won’t find a social media post that admits their newsfeed makes them certain the world is leaving them behind; an admission that they’re drowning in insecurity and failure.

Instead, the filtered photo caption might simply read “#winning.”

On social media, I mounted all my trophies on the porch for everyone to see. Then I lived inside a house, where all of the “not good enough” remained. I was a fraud that maintained a façade because, against all odds, I was CERTAIN everyone else’s house was just as beautiful on the inside as what they displayed on the porch.

3. Social media is a drug

The feedback system of social media praise is simultaneously cheap and powerful. Our brains get a release of dopamine for every like, love, comment, and share. Like scientifically-engineered Dorito dust, these “engagements” are concocted to leave us momentarily fulfilled but still craving more.

A hundred years ago, a typical person might have received only a few moments of validation in a month; an occasional award for a job well done or sincere complement from a friend. Those moments were meaningful because they were rare and they came from someone close. The validation was both costly and earned.

Now, people sit on the toilet with their phones out and pass out “thumbs up” like Halloween candy. The constant stream of validation overloads our brains and numbs the effect, which means we need more and more to get the same high.

We’ll do anything to get another fix. We’ll pander to our friends with a post that they’ll all agree with or drop a controversial (maybe even hurtful) “hot take”, sitting back and taking a long drag on the “likes” that roll in but never quite satisfy our insatiable appetite. When we’re REALLY desperate, we’ll grovel for engagement with a “Only my real friends will…” or “I’m cleaning up my friends list…” post.

Social media cheapened the value of what I considered “friendship,” exchanging genuine affection for cheap highs. It turned me into another validation junkie.

4. Social media turns us into a product

We love free stuff. There is a mass appeal to getting something for nothing and, for years, I assumed social media WAS free.

…but if you’re not paying, you’re the product.

Facebook turned me into an advertising target by compiling and selling my data and demographics to retailers, who try to get me to buy their stuff. Facebook turned me into a hacking target for fraudsters, who use social manipulation schemes to gain access to my identity and assets. Facebook turned me into paid views for every aspiring content creator, hoping to live the “influencer dream.” Facebook turned my feed into a stream of multi-level marketing promotions from friends-turned-“entrepreneurs.”

Facebook also made my family a target when my wife went on TV and our daughter’s disability was broadcast to the nation. At that point, we became targets of every ambitious and soul-less quack, who had a miracle cure to sell. We sorted through weekly attempts to scam us, each private message trying to leverage our pain and guilt in an attempt to scam us out of money.

Social media masquerades as a free way to maintain human connection but it dehumanized, used, and marketed my attention to others. It turned my feed into a sales pitch.

5. Social media manipulates our emotions

The famous algorithms developed by big tech companies aren’t blatantly nefarious but they certainly don’t have our best interest at heart. They are aimed to create revenue.

Since they are paid by “engagement” and the supply of human demand (24 hours/day) is fixed, social media machine learning models are developed to attract the maximum amount of our time and attention possible. These platforms want us to be loyal…they want us to be dependent. The algorithms just happened to discover the optimal solution.

Predictably, humans are disproportionately and biologically obsessed with things that create emotional attachment. Fear and outrage are specifically appealing and biologically hard-coded into our species because they helped humans survive as cautious socially-interested groups, alongside much bigger, stronger, and faster predators.

Pre-television humans didn’t have to worry about many problems outside of their immediate area. Thanks to news and social media, we’ve been force-fed 24/7 access to every existential risk and domino theory known to man. Our natural attraction to those things result in more engagement, which the algorithms begin to optimize until your news feed is a perpetual cycle of outrage and anxiety.

Social media used headlines to turn every world event into a lion in the savannah, ready to eat my family. I couldn’t mute enough people, words, or news sources to put my mind at rest.

6. Social media blurs truth and reality

According to a 2018 MIT study, stories with false information are 70% more likely to be shared and spread 6 times faster than true stories. Facts aren’t as sensational as opinions, statistics don’t connect as emotionally as anecdotes, and attention-seekers never let truth get in the way of a good story.

Social media users are particularly likely to share “fake” posts that agree with their opinions (confirmation bias) or pander to their specific fears…especially when they lack experience with analytical research or vetting sources/methodologies.

Misinformation on social media is a growing concern because a large segment of social media users are going to Facebook as their “news.” They accept every person with a keyboard as a journalist; being manipulated by every fake image, out-of-context video clip, and slanted opinion in the process.

Be honest. You didn’t even bother to check my statistics from the MIT research.

Social media threw a gullible mass of people headlong into a world where they needed to separate a mountain of questionable data into wheat and chaff. The results frustrated and grieved me each time I logged on.

7. Social media kills nuance

Social media was ready-made for habitual, mindless use; dividing information into small chunks of “between time:” in a shopping line, a waiting room, restroom, or on the bus. It ushered in the “TL;DR” (Too Long, Didn’t Read) generation and normalized fast rewards in short spurts.

Online engagement rewards simplification and amplifies stark contrast in a world of gray. This makes Social Media the worst possible platform for conducting a caring, nuanced discussion on ANY subject of complexity.

Anti-Fascist, Blue or Black Lives, Pro-Choice, Anti-Vax; Online perspectives are only viable if they’re tightly packed into a neat box with a bright label. Your complex perspective may have taken decades to form, but it needs to be stamped into a 255 character hash-taggable, meme-worthy, bite-sized “hot take” or it will never get any social media traction.

If something is hurtful, disparaging, or foundationally important to who you are, it’s probably worth hours of earnest conversation…not a late-night rage tweet. On social media, you get a few sentences / seconds to categorically accept or reject a person’s entire worldview, turn them into a caricature of their beliefs, and classify them as a friend or enemy; a 1 or a 0…which is exactly how you’ll treat them.

Social media was supposed to bring us closer together but I mostly watched it divide. It made me more likely to misunderstand and be misunderstood. It fractured the lens through which I see other people.

8. Social media empowers bullies and mobs

It’s disturbing what people will say to you when they don’t have to look you in the eyes. Anonymity, physical distance, and sheer numbers have emboldened trolls everywhere…ushering in the era of the “internet tough guy.”

When observed individually the wild, they are typically quiet and generally respectful, if not complete cowards. Give them a high-speed connection and keyboard, however, and they become an unstoppable opinion-having force. They’re often overtly hateful and lewd; blustering at best…but violent and threatening at worst. They’ll tell you exactly what they think of you, all while hiding behind an avatar and screen name. You will likely never know if they’re completely unhinged or a person at your gym, church, or workplace.

Social media empowers these individuals by helping them build communities based on almost any interest. These ad-hoc digital cults use “in-speak” and hierarchies to exclude others, enforce conformity, and prey on “enemies.”

The new reality is that people scan social media and run into “outsider” opinions that outrage them. They start a flame war and eventually call upon their like-minded friends to join in the attack. The victim often has their own friends they call in for protection. The pattern continues until we’re participating in the digital-age equivalent of a medieval castle siege. It all seems innocuous, but the escalations can be severe, including harassment, emotional damage, depression, suicide, and/or loss of employment.

Social media gave me a front-row seat to harassment of people I love. It turned me into a helpless bystander, while a bunch of keyboard-toting chimps hammered each other with sticks and stones.

9. Social media won’t let us grow

I’m thankful every kid didn’t have their trigger thumb on a pocket-sized video recorder when I was in school. I hope we all mature with years of experience and access to other perspectives. Ideally that change wouldn’t stop when we graduate high school.

The biggest difference in the internet age is that the history of our unfiltered emotional outbursts, passive-aggressive arguments, and problematic opinions are available to everyone…forever. Social media is a time-capsule that preserves my stream-of-consciousness at an age when my prefrontal cortex wasn’t even fully ripe. It’s a fossilized look into our under-evolved states; on exhibit for the world to examine and judge. I often look back in crippling embarrassment at things that I’ve said and ways I’ve reacted.

Over time, I began using my Facebook “Memories” as a way to review and remove my old posts. My mantra became “When I know better, I do better….and then I delete.” In a best case scenario, only a portion of my social circle gets a front row to my cringe-worthiness. Worst case scenario, I go viral or a potential future employer finds my past ramblings…or I die and my children get a permanent exhibit of their father’s ignorance.

Social media isn’t interested in protecting my shame. It exploited my emotions, paraded me around the neighborhood buck-naked, and created an annual reminder to rub my immaturity back in my face.

10. Social media steals our time

Don’t get me wrong. Facebook helped me relax a lot too. Whenever I wanted to turn off my brain and procrastinate for a few minutes, I could take a quick scroll through my social media. It was a fun lens, through which I could watch sports, unload my mind, and keep up with a few geographically distant friends. It became an escape place.

Over time, I recognized that “escape” was a big part of the anxiety to begin with. It was both the illness and the cure; A self-sustaining weed that choked every “in-between” moment of my life.

I don’t think I’m alone here. I often see people post during their workday, I see elaborate social-media targeted engagements and birth announcements, I watch tourists catalog new lands through the eyes of their camera, and I’ve experienced the pressure of capturing my children’s every milestone through a lens I can share.

Our modern lives revolve around the tyranny of social media, the digital despot who commands we trade the vividness of our life experiences for momentary validations of a gawking mass.

Social media was created to share more of our lives. I left because I came to realize it was consuming more of my life and mind than I was willing to give. When I stopped interacting with it, I saw it for what it really was…

Social media was my storefront. The window where I displayed all of the beautiful moments I threw away by not being truly present.

So here lies my social media profile.

I had to do it. It was either him or me.

If you identified with this memorial, maybe you’ll decide to put a few slugs in the chest of your account too. At the very least, I hope you’re comforted in the knowledge that most everyone is a flawed, fraudulent victim of human biology too.

We weren’t built for the digital age and it is breaking us down.

Boys Live. Fathers Sacrifice.


The poison of masculinity is often the way we men treat ourselves. Long before a branch we can plot on our family tree, many of our male traditions were a matter of survival. Being a father meant unrelenting sacrifice for the good of his family, spending every bit of energy in pursuit of food, protection, and warmth. It meant being strong and stoic; not showing a single crack in resolve…as any sign of weakness could be an invitation for danger. Fathers had to be self-sufficient, able to solely accomplish all that was needed in order to keep competition and threats at arms length.

The times have changed but the responsibilities have not. And so the self-inflicted expectations persist. Whether by nature or nurture, the hard-working, unemotional, isolated male archetype lives on.

Many families will never see their father leave for work. He’s up and off while they sleep, making widgets, shuffling paperwork, or otherwise laboring for others. He’ll rarely experience the pride of placing his day’s labor directly on the table for his family to eat. He’ll often feel insignificant, wondering whether he’s making any impact at all. If he’s really “successful,” he’ll work longer and harder, watching work from a device in his pocket. He’ll keep chasing the ghost of comfort; a bar that changes each time his family adjusts to a new lifestyle. His can feel like a Chuck-E-Cheese life, where he cashes in his valuable time for meaningless tokens and trinkets…but he loves his family and has been taught to sacrifice for them, so he exchanges freedom for comfort and meaning for money.

Despite this growing access to work, a father can feel like he never checks the box. He’ll pull into the driveway with a longer list of things to fix, bills to pay, emails to read, behaviors to remedy, practices to attend, decisions to make, and problems to solve. He won’t let how he feels become the priority, because he feels a responsibility to be the steady calm in the storm. He’ll jump head first into the screaming cycle, losing track of days and feeling as if the perfect man he’s supposed to be…the one he remembers seeing in his father, is pulling ever further away from his grasp. He’ll take a day off to recoup. Something for himself. Time to get away, only to fill it with guilt for not working hard enough or being selfish. His can feel like a failure-ridden life, wherein each of his problems is inflicted by his own flaws…but he loves his family, so he clings to the granite-clad facade and lets the waters rage behind.

A father doesn’t ask for directions, even when he knows he’s lost. A friend in “father-ese” means a fishing trip, woodwork, or football…shared interests that won’t dig uncomfortably deep. He withdraws from real conversations with anyone, even his wife. The truth is that he wants her respect even more than he wants her love…and he’s afraid talking about his flaws would cause her to lose both. His raised chalice of success belies the cracks in the dam, and so he will forever hold his conversations on the emotional porch…because when a man lives in isolation, his house is almost always a mess.

It’s easy to laugh at the simple, compartmentalized, male mind. It’s fun to joke about our quirky and superficially predictable nature. The truth is that, in a rare moment of public reflection…usually as they near the end of their journey, you’ll find a father has a much greater depth of complexity than he ever lets on. He finally accepts it was wrong to hide, but it’s not his fault; it was the way we’re all taught. We’re taught to love you enough to keep our insecurities from you, so that you feel safe in our superhero grasp. We’re taught to fight our battles alone, so you can’t be hurt in the crossfire. We’re taught that boys live and men sacrifice.

Chances are, your father sacrificed far more than you ever knew. Thank him for it, today.

Happy Father’s Day.

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No Room at the Inn


When I mentor aspiring project managers, I push my own personal golden rule of sand-bagging: “Expectations are the single greatest factor in the perceived success or failure of any project and one that you can set at the beginning.”

When it came to Holidays, those expectations aren’t wholly set by us. They are a product of how we grew up. They are molded by a barrage of outside messages from advertisers, consumers, influencers….”friends.”

Christmas is the “most wonderful time.”  That’s the message I lived, growing up. I baked cookies and making homemade candy with mom and siblings, with sounds of Crosby and Sinatra ringing in the background.  We’d always do Christmas puzzles, finishing a piece or two with each trip through the room. The anticipation of presents was only bested by the promise of a night with my cousins, aunts, and uncles, where we’d eat, talk, and play games all night. It was a time without school, filled with activity, but free from stress. We never truly experienced need and my dad led an annual family “Christmas project” to help those, who did.

My first year with Cailyn warned of change. When she awoke from a nap on that first Christmas evening with my extended family, she was surrounded by a home she didn’t recognize, filled with loud sounds, tons of people, and overwhelming senses. At the time we didn’t understand why she cried, inconsolably, for nearly two hours. I held her and walked around the house, completely emotionally disconnected from the activity. There was a familiar pit now growing in my stomach. It told me that something was different. Something was wrong.

We now attend only one Christmas outside the home. My mom sets up a room for Cailyn to get alone time. Amber and I acquiesce to all of her demands, knowing we’ll have a bill to pay later because she doesn’t understand we’ll have to say “no” again when we’re home. We often drive two cars, because one of us often has to leave with Cailyn early. As I drive home, I see houses lit up with cars stacked in rows. I see people walking in and out, playing as a family. I remember the unencumbered joy and belonging I felt as a child…

Because you can’t understand how lonely a village can feel, until there’s no room at the inn.

Each year I shop for my daughter and I’m completely confused. Cailyn has anxiety in public, screaming and kicking when we try to take her to the store. When we look at gifts online, she gets frustrated and wants them immediately. She’ll obsess for weeks on end, so we’re often left to guess.

“Will she play with it? It’s expensive. What if it sits around the house?”

I see other parents with little girls, picking out dolls, jewelry, technology, and crafts. Meanwhile, I’m looking at toddler toys for a nine-year-old aspiring woman, nearly as tall as her mother. Sometimes I resent the other families, so I try try not to go out. I’m often rude and condescending; annoyed as I push through the aisles of seemingly happy people.

Every Christmas I pull a “giving tree” name of a girl around Cailyn’s age. Maybe I want to help her and her family. Maybe I want to pretend for a moment that she’s mine. Whatever the case, I watch myself balancing on this razor’s edge of philanthropy and shame. It’s my tradition nonetheless…

Because you never realize your envy smells like the pigs, until there’s no room at the inn.

Cookies and candies never last in our family. Often, we decide not to make them. If Cailyn knows we have sugar in the house, she’ll want more until they’re gone. Afterwards, she’ll beat herself up and scream for an hour out of frustration.

Christmas songs aren’t novel, we hear them all year long. Cailyn is obsessed with the same album and requests it in July as much as December. We know every minute musical detail and it don’t invoke nostalgia or Christmas spirit…only repetition and memories of sadness.

Cailyn is out of school for the Holidays, which is more stress-inducing than free. She doesn’t understand she’ll have to return again soon so the months after Christmas each year is filled with notes from teachers.

“What happened? What changed? Send a helmet. Rough day.”

We read the notes each day for weeks…sometimes months. We know they’re coming from the scratches and bruises on our daughter’s face. We’d do anything to help but everyone who loves her is helpless. We can’t seem to soothe the anxiety of change. Last year, the timing of the holidays made us miss church for multiple weeks and Cailyn wasn’t able to cope with returning. We were called back from service weeks in a row because she was a danger to herself…we now attend separately, switching off and on weeks with our son.

Each year invites a new demon into our home. A holiday switch inevitably flips and turns our lives dark overnight. We don’t cut loops on a paper chain or cross out days on a calendar in anticipation, but rather in apprehension. The next shoe will drop, the next depression will begin, and the next hole will emerge.

Because you’ve never been so afraid of where you’ll wake up until there is no room at the inn.

Christmas in our house looks Instagram-worthy. Amber’s decorations are always first-rate. The tree and fireplace is perfectly coordinated and the presents are stacked just right. We take photos and videos as best we can, but Cailyn gets overwhelmed and stays in her room. She cries when we try to open more than one present and doesn’t want to do it with her brother, who is loud when excited.

Each smile created by my son’s joy is dulled by that perfectly stacked pile just feet away. It’s one where a smiling little girl should sit. It’s like one of the beautiful puzzles I’d worked on as a child…but with a single piece missing.

This year, Amber was decorating again the day after Thanksgiving. I snapped at her when she asked for help. I didn’t want to participate, I just wanted to complain. After a bit, I dutifully performed my errands with a terrible attitude and made her day miserable in the process. While she was at the store with Dalton, I was asked to finish and “fluff” the tree in the main room.  As I moved around the tree slowly, I began mumbling aloud.

“I freaking hate Christmas. I don’t know why we bother with this crap.” I went on and on until my eyes welled up with tears. “God. I don’t want to go here again.” I started to pray. “I can’t live like this. I can’t make it through another winter like last. You’ve got to do something here, because I can’t keep watching everyone living the life I’m supposed to have…the one I used to have.”

It was then I was reminded of the reactions I’d received to my blog posts this year; The people, who thought we “had it all” and thanked me for being so open with the struggles of Autism. I began to recall others, who shared stories with us and how I found fellowship in that transparency. I started praying for people I knew, for whom Christmases meant financial worry and debt. I prayed for people, who had sickness and an uncertain future. I listed some people we’ve lost in the past few years, and the families who would be left with an empty stack of presents in their minds on Christmas day.

In that moment, I realized that we weren’t so different from others. The weight of expectations is something we all bear this time of year. The monkeys on our backs and elephants in our rooms should be shared with those we love as freely as the elf on our shelf. A broadcast of hope for the broken should outshine the perfect little lies we all frame and filter for our followers…

Because I never realized that we are all Christmas projects…
I never understood how much we all need a savior…
I never appreciated that a little child could light my stinking stable…

…until there was no room at the inn.

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Sing


“I am giving up my voice, so Cailyn can find hers.”

The tears in Amber’s eyes belied her resolute strength, as she first informed me of her plans to step down from music ministry. The revelation was startling. From the moment I met Amber, “Worship Leader” was always the title that followed her name. She loved to sing, she was meant to sing…she LIVED to sing.

…and now that identity was gone. At the time, I didn’t completely understand.

Following her decision, when Amber was overcome by “mom moments” during her day, she would quietly step into the sound room I created for her. We would hear a couple of slow chords on the piano and the rest of the house went completely silent…even Cailyn. It would usually begin as a whisper or a groan, but Amber’s voice always evolved into an unrelenting roar, as she summoned strength from whatever song was connecting her heart to God. The emotion in the house was palpable and thick. A shiver would run down your spine.

One day, I thought I heard Amber’s warm, airy, treble tone from across the house. As I got closer, I realized it was Cailyn.

“Head and shoulders, knees and toes.” Cailyn repeated over and over, becoming increasingly irritated.

While this was an interesting anomaly at first, it quickly turned into a regular event. Whenever Cailyn was growing upset, she would begin singing that same song.

“Head and shoulders, knees and toes.” she repeated over and over. Although we grew to despise the song, it filled an important void in Cailyn’s development. While she couldn’t describe when she was sad or angry, she sang to give us early insight to when she needed attention. This allowed us to address it before she became violent.

The second evolution in Cailyn’s songs occurred when she started using them to describe her more complex emotional needs. One day, I was entrenched in my phone after work as she tried to grab my attention to take her to her room and play. She soon grew upset and violent, when I finally looked up.

“Cailyn, what’s wrong? What do you need?” I asked, exhausted.

“Daddy car ride song.” She responded.

As we pulled out of the drive, she made her music request.

“Cinderella song. Daddy Cinderella.” she asked.

At first, it caught me off guard. “Cinderella” is a song by Steven Curtis Chapman, which describes a busy father setting aside the business of his day to spend time with his daughter. I dismissed it as a coincidence and turned the song on. As soon as it ended, she looked at me and emphatically made her next request.

“Play Cinderella song!” she yelled, staring directly at my eyes.

We repeated this cycle countless times on the one hour car ride, never listening to anything else. Finally, I realized she needed something else from me.

“Cailyn, daddy is sorry. Want daddy to play?” I asked.

“Daddy go home. Take you room. Daddy tickles.” She responded firmly.

What I had interpreted as an inconvenient routine was apparently a deep emotional need. By punishing me and forcing me to listen to that song, Cailyn was using it as her voice. Now, I’ll often surprise her and come straight to her bedroom after work. I’ll sing “Cinderella” and begin to tickle her, as she puts aside her iPad and giggles.

Perhaps most amazingly, Cailyn uses music to heal. I first noticed this the Christmas after Amber gave up music ministry. We were at a Christmas program when a teacher from the school pulled me aside. Her eyes welled with tears as she told me a story.

“I’m so grateful to have Cailyn in the school. Whenever I think I’m having an awful day, she always seems to comes over to me and begins to sing ‘Yes, Jesus loves me.’ Every time, I just begin to cry. If this little girl, who can barely communicate, can sing about God’s love, who am I to complain?”

But years later, Cailyn was facing a crisis of her own. Each night, she sat in bed and repeated everything making her nervous about the next day. Sometimes it was school, others a doctors appointment. We went downstairs to be with her several times each night. She cried, screamed, and hit herself…even to the point that it wasn’t uncommon for her to bust her lip and bleed all over her pillow.

One night, I thought I heard something different so I checked her security camera…Cailyn was singing.

The song was familiar but we couldn’t quite figure it out. We started trying to decipher the lyrics and searched for the song. When I finally discovered what my anxiety-riddled daughter was singing to get herself to sleep, it nearly broke me:

“Oh Lord, oh Lord I know you hear my cry. Your love is lifting me above all the lies. No matter what I face, this I know in time. You’ll take all that is wrong and make it right. I will stand my ground where hope can be found.”

As we discovered the important therapeutic role specific songs played in Cailyn’s life, we started incorporating them into her most traumatic experiences. Eventually, she found a song she wanted for showers. There was a different song for bedtime and even a playlist she liked specifically for her ride to school. Her entire school would know the last song she heard, because Cailyn insisted that “mommy sing” it with her as she exited the van. I’m convinced this is to soothe and anchor Amber as much as it is for Cailyn.

Even more recently, Amber and I were dealing with anxiety of our own. We had just scheduled an appointment to meet with an attorney about our will and a special needs trust for Cailyn. We discussed the inevitable questions, including what would happen to our autistic, poorly communicating daughter when we could no longer be with her to interpret. At one point in the conversation, Amber just huddled in the corner of our entryway and bawled.

“NO ONE ELSE KNOWS HER! THEY WON’T UNDERSTAND!” she almost had to yell to break through the sobs. “SHE’LL BE SO SCARED.”

The only thing I could think to do was hold her. That was, until Cailyn apparently had a better idea. She came upstairs, pulled out some slime, and sat at our kitchen island.

“Youtube. Hallelujah Music.” she demanded, asking for her praise and worship playlist to be on in the living area, instead of her room.

Just an hour later, Amber had to take Dalton to another appointment so I drove Cailyn around town. I was still battling, distracted by our previous conversation. That’s when one of the songs Cailyn asked for struck me. I began to sing along.

“So let go, my soul, and trust in Him. The waves and wind still know His name.”

My thoughts fell back to the day I realized that Cailyn had Autism. It was a moment that everything was crashing around me…one where I saw God as distant; asleep on my boat. That night, I logged on to Facebook and posted one thing…

“Peace. Be still.”

Eight years later, in a car, Cailyn began to sing it with me.

“It is well with my soul.”

By the end of the song, she was laughing and clapping as a tear rolled down my face. She had a new demand.

“It is well song. Daddy sing!” she would repeat for the rest of the ride.

Early last week, I began making plans for Thanksgiving. While many people love the holidays, Amber and I have come to dread them. In our family, the darkest seasons have always begun on Thanksgiving or Christmas. They represent change to Cailyn and create a huge rut we end up spinning in for the next few months. Just last year, the extended break began the worst cycle of our lives…one in which we stopped being able to attend church as a family. As my own anxiety began to get the best of me, Cailyn again walked up the stairs with a request.

“Daddy, yellow guitar sing it is well.” She asked, laughing.

Although it had been years since I’ve done much with a guitar, I got it out, tuned it, and began to sing with Cailyn. As we went through the song over and over, I listened to the words and a flood of thoughts and emotions poured in.

If a nine-year-old child with borderline uncontrollable and violent anxiety can find rest in praise, who am I to be troubled? Maybe the lesson is not that waves can be calmed, but that I can rest while they crash. Perhaps faith isn’t a belief that our situation will improve, rather the knowledge that I’ll be okay even when it doesn’t?

I looked down at Cailyn, who was no longer jumping around and playing. She was sitting next to me, looking at my eyes and interested in my every expression. It almost immediately struck me.

She wasn’t singing for her. She was singing for ME.

My voice cracked and I stopped for a moment. I flashed back to the moment Amber delivered that startling news to me. Looking back I could clearly see the vision Amber had years earlier. Amber gave her voice so that Cailyn could find one. In turn, Cailyn was giving her voice to help others (including me) find theirs.

That’s when I was interrupted…

“Daddy sing it is well.” Cailyn instructed, as we finished singing:

“Through it all. Through it all. My eyes are on You and it is well with me.”

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Hoping Mechanism


“Dad, I’m ready for the new house to be done so you can play with me again.”

I adjusted the rear view mirror to see my son, looking down and fidgeting with his hands. In hindsight, it’s apparent he was hurting and neglected. Instead of comforting or listening to him, I just rationalized my behavior.

“I’m sorry, buddy. Daddy has to make sure everything is going good with building the house. I know that it’s not fair to you that we don’t play as much. I try to take you with me so we can spend time together. There is only a little more of this left. When it’s all done, things are going to be so much better. You’ll have a huge room and Cailyn will have what she needs. This will all be over soon and we’ll have more time to play again. I promise.”

That’s how I lost nearly eight months of my son’s childhood.


 

The process began with noble intentions. Cailyn had less than 100 square feet of space in our old house. That tiny room was adjoined by the master bedroom, Dalton’s room, and the exterior wall beside our new “party” neighbors. One night, those neighbors made so much noise that Cailyn stayed up wailing and hitting herself past midnight. We approached them multiple times and couldn’t come to a resolution, so it became the proverbial straw that broke the camel’s back. On memorial day weekend of 2016, we decided to take the opportunity to build something perfect for us AND Cailyn. We put our house up for sale.

We were in a dark place, wrestling with Cailyn’s behavior. The new house represented a chance to reboot and would, in theory, fix all of our problems. Cailyn would have two rooms, a bedroom for sleeping and a play room for playing. This would alleviate her confusion with “bedtime” and “playtime.” The play room would be sound-proof, so she didn’t have to wear headphones or hide in the bathtub whenever neighbors mowed their lawn or had parties. Her bedroom would be under her playroom and separated from both our master suite and her brother’s room. We fixed almost everything we didn’t like about that old house and even planned for a semi-independent living area for Cailyn in the basement, for when she got older.

Once the changes began, things instantly felt better. There was hope in everything we did. The house we were renting was smaller. This meant Amber had to move her home-based personal training business to a building downtown. We signed a lease and began renovations. This allowed her to get out of the house and kept me busy and productive. In addition, I was starting a new job so all of my projects were fresh and exciting. Our entire life felt different, as if we were living in a state of “temporary.” Whenever something bad happened, Amber and I would just talk about and imagine the new house. We viewed it as a finish line; a destination that we pretend we could put our current sadness behind for good.

Looking back, Dalton’s statement was a cry out to a parent, who had been lost in this alternate reality. I was using a utopian dream as an escape from all my problems, a “hoping mechanism” for everything wrong in my present. Amber and I were both convinced that our sadness was dictated by our situation…that we were victims of uncontrollable circumstance. Whenever I felt out of control, I visited the work site. Whenever Cailyn had a bad day, I visited the work site. When I should have been helping with homework or throwing the ball, I invited Dalton to the work site. My drug of choice was to look so far ahead, that I blurred what was right in front of my face.

…but future eventually has to intersect with the present.

Everything with the house started out well enough but quickly fell back to our “normal.” It was never quite as good as we’d dreamed. Then, at the beginning of 2018, Cailyn’s behavior got worse. Much worse. Amber and I started to resent our decisions and the house that didn’t fix anything. We began to to discuss how we should have moved into the country instead. We talked about downgrading and using the extra money for vacations. We even looked into and imagined living in different states or countries. One day, I found the perfect home, next to the perfect school, where we could have Cailyn live. As I researched and fantasized, I looked beside me, where my son was laying on the floor with his iPad…and I realized I wasn’t exhibiting healthy behavior. This was one in a myriad of symptoms I was displaying, all of which pointing to an overwhelming absence of joy in my life.


 

One of the most frustrating behaviors Cailyn exhibits is repeatedly asking for things on her schedule. We’ve tried writing it down, setting timers, and making up songs but it does no good. Sometimes, she can go fifteen minutes or so without asking but sometimes she’ll ask every 30-90 seconds…for hours at a time. This summer, we promised to take her to Great Wolf Lodge for vacation. Unfortunately, we scheduled it too far ahead and she obsessed over it for weeks, to the point of self-harm. On the day of our visit, she had fun for only a few hours before asking to go home. She immediately began to ask for “slime.” Apparently, the promise of fun in her mind didn’t live up to what we delivered and she was already onto the next thing.

As I drove Cailyn home, I became irritated. Why can’t she just enjoy the nice things we try to do for her? Why does she always need something else? Why does she always need so much more? Why do the things she asks for never make her as happy as she thinks they will? As I started feeling sorry for myself, I recognized the irony in my self-pity. That’s when I turned the music up, rolled down the windows, and put my hand on Cailyn’s hand.

We laughed, danced, and sang the entire way home.


 

The human brain is extremely efficient, using “shortcuts” to handle the constant barrage of data coming at it. A vast majority of what your eyes take in is just “noise” to your mind and goes completely unnoticed. The benefit is that you filter out the unimportant signals, focusing on meaningful changes or patterns you recognize. There are numerous cognitive biases that result, including one known as the Baader-Meinhof Phenomenon. This describes what happens when you pay attention to a previously unknown pattern and suddenly begin seeing it everywhere.

This is why you’ll sometimes hear the definition of a new word for the first time and begin hearing it much more frequently in conversations. It’s also why, when you are looking to buy a car and start researching it, you begin to see that car everywhere. It’s not that people are suddenly buying the car more. You have trained your brain to now recognize a pattern that was previously insignificant and filtered out.

As a child, I went to church camp every year. Our camp speaker, Jim Smith, had a fun challenge, wherein he would allow a camper to bring a box to each morning service. We could put ANYTHING inside that box and he would preach about it for five minutes. I remember him opening that box to discover rocks, a frog, a diaper, or dirty socks…it didn’t matter. He always managed to frustrate us and accomplish (even excel) in his mission.

It wasn’t until I had to abandon that Great Wolf Lodge vacation, that I began to understand his proficiency. As I drove down the highway with my Autistic daughter, laughing and singing. I saw our camp speaker’s sermon skill through the lens of Baader-Meinhof. Jim Smith lived a life, where he looked for God working in all things…and when your brain recognizes the pattern of God working, you can’t help but see it everywhere that God works: Everywhere.

The same can be said for joy. In that car, I learned that true happiness is neither a condition nor a situation. Our outlook on life is the pattern we’ve trained ourselves to observe. We are the common denominator in all of our sadness, because joy is a function of perspective and not position. When we look forward to a change in our environment to bring us fulfillment, we’re moving all our old problems into a new house. When you make a choice to look for the pattern of God working in all things, however, it becomes a habit…until eventually it’s difficult NOT to see Him.

When God replaces change as my “hoping mechanism,” I can stop waiting on a new home to make me happy. I can stop waiting for my daughter to sleep, for a sickness to end, or for neighbors to be less annoying. When I can find joy in my present, it doesn’t matter if I open a box with a rock, or frog, or stinky socks; I can see God working and I stop throwing away the gift of today by waiting for a tomorrow that never comes.

Live every day with the reverence, that your future self would give ANYTHING to get it back. I only wish I could go back to that moment where my son cried out for his absent father. I would turn the music in the car up, put the windows down, turn around and throw the ball with him…because I now know he will never be five years old again.

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Hide


“MONDAY NO SCHOOL! ALL DONE!”

It was over an hour past her bedtime but Cailyn was wide awake, screaming and hitting herself in the face. The next morning, we were going to send her back to school after an extended weekend. She didn’t want to go and decided to engage in a battle of wills. I tried speaking calmly, fruitlessly working through clapping and breathing exercises. She flailed around violently and battered the sides of her head as she huffed and puffed, mocking my breaths. Next, I took her headphones away as incentive. I told her she could have them when she was calm. We tried counting backwards to no avail. She began scratching and ripping at her ears. I got close and tried to provide pressure by giving her a hug. She had an overpowering smell of body odor and was drenched in her own sweat. She dug her chin and nose into me and then slammed her head against my shoulder. I was exhausted. Out of options, I grabbed both of her hands and held them against her side to keep her from doing any more damage. With tears in her eyes, scratches up and down her face, and a now bloody quivering lip, she got an inch from my eyes and let out a hybrid growl scream reminiscent of a modern day exorcism.

“MONDAY NO SCHOOL! BE CALM! 5-4-3-2-1! HEADPHONES!”

After a few more minutes, we were both exhausted. She finally relented and went to bed. I set my alarm to wake up just three hours later, when I would need to wake up in the middle of the night to take her to the bathroom. Unfortunately, I never needed it. My adrenaline, thoughts, and tears conspired to ensure that I wouldn’t fall asleep. This is not an isolated incident…it was an emerging pattern.

The bedtime fight is one of many new routines, in a season of escalating anxiety and violence in Cailyn. Overnight, she went from loving church to refusing to go. We got called out of service several straight weeks due to her meltdowns until we relented. Amber and I started alternating services with Dalton, each week. We now go nearly everywhere separately because we can’t count on being able to stay. Cailyn melts down at the mere mention of school and screams and kicks at us when we try to take her out of the car to go into the store. She loves car rides (especially when Christmas lights were out) and sometimes forces us to drive around for over an hour, but violently kicks at the dash and windows when we tried to take her home. I had to try to invent ways back ways to sneak her into the neighborhood without her realizing it. One time, she threw such a fit that she kicked my car into neutral in an effort to keep me from going a direction she didn’t want. In the past six months, she’s broken multiple iPads, pulled out her own teeth, eaten feces, and generally tormented nearly everyone in our house.

We haven’t just been sitting back and taking it. Cailyn had been on a medication that seemed to help for around a year. When things deteriorated, the doctor increased the dosage, tried another medication, then increased the dosage of that one. Since they stopped working and would assuredly have long-term side effects, we began to ween her off both. We’ve been to multiple specialists, one of which had to call assistants in to restrain Cailyn during testing. Completely baffled, they recommended immediate behavioral intervention and sent us home with a sedative used in surgery “for emergencies.” Amber was called into the school to discuss the new behavioral issues and came home with instructions to send Cailyn a helmet to wear because they were afraid she’d concuss herself. We recently received approval for respite care, which we viewed as a silver lining. Unfortunately Amber has tried for six months to find an assistant caregiver but every lead falls through. Not even so-called “experts” felt equipped to handle her behavior.

Almost overnight, we entered the longest, furthest, most painful behavioral regression in our daughter’s history. To this day, we’re still searching desperately for the source and solution.

My own personal slide was far less sudden. We recently built a house with a special room for Cailyn, thinking that all of our problems would be solved. Initially, it seemed to work. Her behavior improved and she enjoyed being home. With everything clicking on all cylinders, I grew comfortable in a season of relative ease in our lives and was certain that we’d turned a corner in our battle. When things turned so suddenly and our wheels began spinning again, I felt helpless and out-of-control…so I hid.

It started simply. I decided not to take Cailyn out into public, since it would exacerbate her behavior and resulted in stares and ridicule. Next, I began avoiding Cailyn’s room. I knew if I went in, she’d ask for something. If she asked for something, I might have to say “no.” When she was being calm, it was easier to just stay away and be grateful for a moment of peace. I told myself it was best for everyone. All of the sudden, our family was bored and trapped. Almost all of our activities split us apart and someone was always left behind. Self-pity began to fester in my mind. I couldn’t break from it, so I began obsessing over mindless games on my phone. If I honed my focus just right, everything else would melt away…until I was snapped back into reality by Cailyn screaming in the other room. I stopped feeling empathy for her. I was left with only resentment and anger. Her cries were pulling my mind back into a life I no longer desired.

At the same time, health problems resurfaced and I feared my ulcer was returning, so I wasn’t eating well. I couldn’t turn my mind off long enough to sleep, so I started staying up late and falling asleep to television shows, which I used as another life escape. There were times I would intentionally come back later from work because I didn’t want to have to walk through the door of my own home. I was ashamed and couldn’t talk about it with others. Nobody would understand or be able to help anyway so I avoided meaningful interaction with anyone. I faked interactions when forced, but isolated myself in every way imaginable. Outside of a few fleeting moments with my son or wife, there was nothing I truly enjoyed or looked forward to. I was alone, in hiding, and barricading the door.

It’s not a huge jump from “hiding from life” to “wanting to escape.” I began looking at real estate around the country and fantasized that it might somehow change our situation. I looked into turning Cailyn over to a full-time residency program. This proved too expensive and too wasn’t a realistic option for Amber, who was still thinking empathetically (and rationally) about Cailyn’s need for us. The guilt of being willing to part with my child overwhelmed me, only surpassed by the realization that I wasn’t enough for her. With all other avenues seemingly closed, I began just wishing it all would end.

While my distance wasn’t beyond notice, Amber wasn’t aware of the depth to which I’d sunk. Admitting I had lost control of my own mind was emasculating so I even hid it from her. Instead, I trusted the internet for answers, taking tests and reading the stories of others to determine whether I needed intervention and to seek strategies to begin a climb back up. I dialed a helpline several times and hung up before anyone could answer. Like a medieval superstition, I was afraid of admitting it aloud…even to myself. I feared the stigma, the judgement, and the pity. As a control freak and perfectionist, I couldn’t imagine accepting someone’s pity. I tried to convince myself it was a phase I’d eventually beat…until finally I couldn’t keep it hidden. One evening, it all flooded to the surface when I snapped at Amber. Now exposed, I knew I had to explain. I approached her with eyes red and full of tears.

“I think I have a problem.”

Transparency is easy when unveiling a conquered past. Sharing comes natural in a flattering light and at the perfect angle. Social media is filled with families on Easter, staged for a selfie in their Sunday best. You might not recognize those same people if you saw them running late and fighting just moments earlier. People always tell me I’m an amazing father but they don’t live with me when I’m tired. You see the “I’ve got this” version of myself on WordPress, weeks later. You never get a real glimpse into the frustration, doubt, and despair. I call this version the “this could be forever” me. This is the side that goes to bed, wondering if I’m just a hamster on a wheel, doomed to this cage until death. That is why I hide. I won’t share a lie and can’t stomach the public failure. Every struggle needs a victory; each mistake, an accompanying lesson. When I stopped winning, I stopped sharing.

Little did I realize, I’d been given my lifeline six months prior. It was a tiny breadcrumb I left myself from what I considered to be the height of our journey. On one particularly bad day, I found that breadcrumb while sitting around the house, waiting on some contractors to finish up work. Bored, I went back and started reading a journal entry I made in the previous year. I had titled it “Where is God when I’m suffering?” and it contained three “wilderness” lessons. I started to research and document these lessons, convinced I needed to share them with others struggling through difficult periods in their lives. When new priorities and comfort emerged, I let that mission die and never got around to finishing it. As I read this journal entry, it was now from the lens of the very people I’d intended to help. It was as if I was reaching out to myself; providing a mountaintop perspective of my current season…and maybe the way to climb again.

Once the workers finished, I went down to examine the final product. The foreman asked “Do you mind if I ask what your daughter’s situation is?” They had all heard Cailyn throwing a fit, as Amber ushered her off to school so it was apparent that there was a problem. I told him the situation and he explained his empathy. He recently encountered a health situation with his son which, although mostly resolved, still left their family with challenges. In that moment, I saw his pain and so I shared what was immediately on the top of my mind…my three lessons. We chatted for nearly a half hour and, by the end of our discussion he had tears in his eyes. He reached out and grabbed my hand to shake it.

“I am so glad I met you. Thank you for the encouragement.”

As they left the house, I texted Amber. I felt a sense of joy that I was able to help someone. I also felt a renewed sense of hope. In the process of trying to convince him that there was a purpose in his pain, I had somehow flipped a switch in my own mind and began to see my own. Since that first opportunity, I’ve sought out and had similar discussions with at least a dozen other people. Each time, it becomes easier. Each time it lifts my spirit further. I didn’t understand the mechanisms behind it until Amber shared a sermon based on a story in the fourth chapter of 2 Kings.

In the story, a woman had lost her husband and everything she owned except for her sons and a small bit of oil. When she asked the prophet Elisha for help, he asked her to gather up empty vessels from her neighbors, take what little she had and pour into them until they were all full. This continued until there were no empty left. The symbolism is that we don’t need to be whole in order to pour into the lives of others. In fact, it may often be the act of sharing from our emptiness that leaves both vessels full.

I share this all from a perspective, with which I never thought I’d identify. One I often boasted of not being able to understand: Depression.

With the renewed media attention on the subject, I felt compelled to go one step beyond just sharing my hope. I feel like I needed to be transparent in my doubt, which is made more difficult by the fact that I don’t yet have an ultimate victory story to share. Cailyn’s behavior is as bad as it’s ever been, with no immediate end in sight. As I look back at the bottom from what you might describe as foothills, I can only provide some basic direction.

If you’re struggling, remember that everyone has a story. Don’t pretend. Don’t hide. You have something to offer to others and others have something to offer you. Seek casual opportunities to talk and slowly share your experiences. You’ll be shocked how often others are struggling and will reciprocate. Journal any small victories, lessons, or positive things in your life and use it for reflection in the “lean” times. You don’t have to reveal everything to be authentic and you don’t have to be a sage to impart wisdom. In a world where everyone is their own brand, I’m finding that transparency is one of the only meaningful broadcasts left. If you can provide support to others, that will be the tide that lifts your ship as well.

If you’re doing well, your responsibility is greater. Posting a phone number to call for help isn’t enough. Every time you reply “Good. You?” when someone asks “How’s it going?” you are complicit in their lie. I’m not suggesting that you host a deep dive with every person you meet but you should be exploring the lives of of people, for whom you genuinely care. Make it just a little harder for friends to stay in the shadows. At worst, you’re strengthening the bond with another human. You may just be the last lifeline for those, who choose to hide.

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To Fall but not Fail


I woke up, half-dazed, to the sound of Cailyn screaming in her room. I glanced at the clock…just after 5:00 AM. Amber had already left to go work out so I was on my own. We didn’t get to bed until late the night before because Cailyn fought sleep and screamed herself to sleep. Of all the days to have an important (and early) meeting.

She asked to go downstairs and watch “Nemo” so I took her to the basement, got her a small breakfast and went upstairs to get ready for work…and now I was running late. Minutes after I hop in the shower, I hear  screaming and banging again. I jump out with shampoo still in my hair, throw on a towel and run out to Cailyn screaming for fruit snacks.

“No, Cailyn. Eat your breakfast and go downstairs, you’re going to wake up your brother.” I say firmly, but quietly, as I usher her back down to the basement.

“FRUIT SNACKS!” Cailyn yells, as she immediately begins hitting her chin, stomping her feet and screaming at the top of her lungs. I start to walk back up the stairs, when suddenly I’m face to face with Dalton, who is standing there holding his stuffed dog by the tail.

“Daddy, I couldn’t sleep. Sissy was loud. Can I have fruit snacks too?”

Cailyn sat on the bottom step and just kept yelling.

“FRUIT SNACK! FRUIT SNACK! FRUIT SNACK!” Each successive rang louder in my ears, yet I could hear my own heart beating.

“QUIET!” I yelled, myself, cutting the entire scene with silence. “FINE!”

I walked over to the cabinet, pulled out a bag of fruit snacks and threw it at the wall and it slid down the stairs.

“I DON’T CARE ANYMORE! TAKE EVERYTHING YOU WANT! ROT YOUR TEETH, BE SPOILED, OR WHATEVER! JUST PLEASE, FOR THE LOVE OF ALL THAT IS GOOD AND HOLY, SHUT YOUR MOUTH!”

I turned around and went back to the bathroom, imagining that both kids were just standing there scared and watching me leave them.

On my way to work, my mood was’t helped by the traffic. After repeatedly watching a car change lanes, slow down and turn their signal on, only to speed up and then cut immediately in front of me to turn, I had enough. I laid on my horn and started screaming again.

“WHAT IS YOUR PROBLEM?! YOU HAVE NO FREAKING CLUE WHAT YOU’RE DOING! CAN YOU GET ANYTHING RIGHT?! AHHHHHHHHHHHH!” If anyone were in the vehicle with me, they would be sure I was having a breakdown. This was the culmination of what I term a “dark period” in my life; One that would soon bring me to beg for help from my wife. I was only partially yelling at the car. I was partially yelling at Cailyn…I was mostly yelling at myself.

Later, after I came home from work, it was time to push Dalton to practice riding his bike. Dalton is a perfectionist and demands a lot from himself, just like his father. He hated riding that bike because he was embarrassed but I’d watch him admiring the kids across the street. He wanted it so badly. Just as things were going well, I watched his foot slip off the pedal. Then came the ensuing meltdown, as he yelled and started to walk off.

“I JUST DON’T CARE! I’M NOT GOOD AND I DON’T WANT TO RIDE THE BIKE EVER!” he yelled, nose scrunched, eyes wet, and face red.

“Dalton, you can’t quit because you messed up. You just don’t know how to do it yet. You have to be patient and practice. Someday, you’ll be good at this and you’ll be so glad that you didn’t give up.” At this point, I realized the irony of the conversation and, choked up, I struggled to finish. “It’s okay to mess up. It’s never okay to stop caring…to stop trying.”

It’s hard to hear people say that I’m a good dad or that Cailyn is blessed to have me. Most people who say that will never spend more than a couple hours around us with Cailyn. I go back and re-read my own advice, philosophies, and stories and don’t always recognize the person talking. Posts are so infrequent because the path to each success is covered in scars. Looking back, I sometimes feel like I’m being chastised by a better version of me, ridiculed as a failure, completely incompetent…an abject hypocrite.

The truth is that perfection doesn’t exist, nor does fate. Life is messy. One of the most damaging myths, especially in the church, is that there is one perfect path or destiny. We grow to believe that, if we make the right decisions, there will be a current that ushers us to immediate and lasting success. It doesn’t prepare us for the struggle and too many quit when they fall. There are no 15 minute abs or miracle muscle pills, and there is no superhighway to your happiness.

Not everyone has a child with Autism. Some are losing their marriage, their job, or their health. Others have lost a sense of purpose and feel like they’ve missed the only on ramp that would lead there. In reality, the past is over and you haven’t missed the boat. Each day, we are called anew; Called to learn from the pain and respond by being better in the now.  Even if you fell yesterday, you can only fail today.

It’s not easy for a perfectionist to publish their struggles but it’s one of the last remaining meaningful broadcasts. In a world, where everyone is their own brand, we crave transparency. There is beauty in the fall, because our own hope hinges on the redemption of the inherently imperfect.

Autism is just another facet of this imperfection; a view into a tainted life and world, that would otherwise be exposed through another lens. Normal is an illusion and perfection is a lie. Your satisfaction with life will never be dictated by external happenstance, but by your willingness to rise above it.

My rise began when I came to the realization that Cailyn isn’t the reason I fall short…she’s one of the only challenges that I’ve ever loved enough to face the fear of standing back up.

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Warrior


“I had a dream about Cailyn. She was around ten years old and we were playing and talking just like any mother and daughter. I woke up and I just felt like everything was going to be alright. She’s going to be okay.”

These conversations were typically very one-sided. I’d listen to my wife, Amber, smile and nod my head. Some days, it seemed she was trying to convince me and other times I almost felt she was trying to believe, herself. I’d act and be supportive as best I could but, in the world of Autism, hope is a hobbled antelope amongst lions. I’d learned not to let myself go there. I’d prepared for the worst.

I’m the realist of the family, perhaps as pragmatic as anyone I know. If dreams are for the sleeping, I’d been awoken to the reality of my daughter’s plight the day that we drove home from a consultation with a child psychologist in 2011. I read pamphlets and stories of people who had “conquered” Autism through years of intense therapy. They had resources we could never hope to approach and they bragged of the results; Children, who were mostly self-sufficient but still needed care and frequent check-ins. Until that moment, I was just a naive boy, convinced that I could save my daughter and work our lives back to “typical.” It was then that all hope laid slowly to the ground and succumbed to its inevitable fate.

As grounded as I am, Amber is far more ambitious. In her mind, she can accomplish anything and she won’t hesitate to push for it. With her love for music and vocal talents, Amber knew right away that she was destined to be a singer. She went after it with all her might. We’d talk about her dream to sing and I supported her with everything I had, using what marginal skills I possessed to try and help her put out CDs. Still, as much as I believed in her talent, I knew how unlikely it is for anyone to get just the right breaks to “make it” in the ways she envisioned.

Then she started to get opportunities. She was singing at events and getting to lead regularly at church. She even got an opportunity on the radio and put two songs on iTunes, when she came to me with a startling revelation.

“I think I need to take a break from singing and focus on Cailyn and my family.”

After a while, the hours of working with Cailyn and an increase in self-injurious behavior began to weigh her down. Amber needed an outlet and she found it through exercise. She was already in shape and did a lot of cardio, but she wanted to really get her frustration and energy out. I bought her a heavy bag and she started going to the gym. After a particularly rough session of therapy, it wasn’t uncommon to hear her beating the life out of that bag, her face dripping with both sweat and tears. This was a necessary outlet for frustration and gave her the opportunity to socialize in ways that having a child with Autism can restrict. This activity led to shifts in our interests. One day, we were watching “American Ninja Warrior” when Amber turned to me and started dreaming again.

“I think I can do that. I want to train to be on American Ninja Warrior.” She said, with that familiar sparkle in her eyes.

At this time, Amber couldn’t do a full, strict pull-up. She was fit, but not strong by any means. I just smiled and nodded. I’d do anything I could to support her but I didn’t REALLY consider it being a reality. There is just too many people, who have been committed for years. She didn’t have a chance.

If my hope had died when Cailyn was two, its grave was trampled near the end of 2014. Cailyn’s violence and tantrums had hit a new level. During the subsequent months, she would get down on all fours and bang her head against the floor. She began to regress and was peeing herself frequently. She started to wake up in the middle of the night, again, and her school was even looking for suggestions to help with the behavior. I felt that everything was going backwards and that life had begun to spin out of control. Amber and I were both at our end, when she told me about that most recent dream she had of Cailyn. I smiled and nodded as she talked but I had a much more frank conversation with my dad, who called that evening.

“Son, I just wish there were something I could do to make this all go away.” he said, his voice  unfamiliarly helpless.

“It won’t go away. This is permanent. This is my life for as long as I’m on this Earth…and my only prayer left is that God will have mercy and take me soon.” 

I was finished.

The day after Amber’s dream, Cailyn had a good day. It was followed by another. She strung several together and started sleeping better than she had ever before. Then she started asking for things more calmly and reacting with less violence. The accidents stopped and then came the shocker; She started spontaneously stringing together words. We listened in wonder, as she started using verbs and adjectives with her nouns. She was describing things appropriately and began using “Mommy” and “Daddy” correctly, to ask for us.

I found myself falling in love with my daughter all over again and felt a frightening spark of hope return.

I did Amber’s American Ninja Warrior submission video. As I looked through the video clips, I couldn’t help but watch the hours of therapy sessions that Amber put in and painstakingly documented. Each challenge had passed and Cailyn had conquered with her warrior mother at her side. This inspired me to do all I could to make Amber’s dream become a reality…but it was a long shot. She had a ton of talent but was far from unique in that regard. In the coming months, I tried to subtly prepare her for not getting chosen. 

Then, during Dalton’s birthday party, I received a call.
“Hi, Craig. This is American Ninja Warrior. I need you to be very calm and try not react, but Amber has been chosen to be on the show and we want you in on the surprise.”

Cailyn’s best days have come in the sunrise since our most recent war with Autism. As we prepared for the show, Amber asked for a new shirt. Immediately, “Cailyn Can” came to me. I designed it specifically for her run, to give testimony to the future, inspire her to push, and to use this impossibility as a proxy to speak life into a defeated father.

In the moments before her run, Amber needed that inspiration. As we witnessed strong contestants go down early, she was shaken. 

“I don’t think I can get past, she said. I would be happy if I could just make the snake.” She said, eyes wide with fear and hand shaking.

“You’ve got this. Trust your training, hold on and don’t leave anything out there. Hold on for Cailyn.” I said, as I pulled her head to me and kissed her forehead.

I wasn’t just nodding and smiling. I believed it.

With each of the first five steps, my breath stopped and, as she clung to the log, I could barely watch. Just coming to her feet on the second platform, completely dry, was an accomplishment. Still, staring her in the face was the demise of many other ninjas…the snake.

As she took the first careful steps, all who knew her could see the nervousness in her body language. She made it carefully through the first three quarters when everything shifted and she began to lose control. I remember a feeling of disbelief…it felt like it shouldn’t be over. Then, as if propelled back up, Amber shifted her weight, stopped her momentum at the last possible instant, crossed legs, regained balance and hopped to the next platform.

Her next and final obstacle would prove to teach a lesson in fear and regret, which she’ll take with her into future training and apply to our true battles. Still, our pride was undeniable. What she had done was impossible just two years earlier…but it was only the outward evidence of a determination that has kept us afloat.

Amber was a warrior, long before she could ever do a pull up. She held her daughter and family up when lesser dreamers would fall. The emotional revelation of this new world was wrapped in the irony that, on this massive stage, the cynic had become the believer and Cailyn was the one holding up her mother.

  

My Valentine


I remember the conversation but I don’t recall a specific instance of it. That’s because it happened so frequently, throughout my childhood. Sometimes, it was as I was being tucked in. Other times in the car. Whenever I was alone with my parents and things were quiet, it seemed like the subject was inevitably going to come up. It started something like this:

“Craig, do you have any idea how much we love you?” they’d ask.
“I guess” would be my typical response.
“We do. We’d do anything to protect you. I’d lay down my life for you. If a bullet were coming at you, I’d jump in the path to keep you from harm.”

If not the most probable, this hypothetical bullet was apparently the most dramatic scenario they could muster…because it was ALWAYS the fictional way they’d demonstrate their love. It must have made an impact because I believed them. Wholeheartedly. It made me feel safe. It made me feel important. It made me feel loved. It made me feel the way that every child should, but so seldom do. Still, I could never imagine doing that for anyone else.

When Cailyn was born, I remember feeling awe. I remember being overwhelmed with fear and the weight of responsibility. I even remember wondering if her head was going to be shaped like a cone for the rest of her life. What I don’t remember was an immediate and overcoming feeling of unconditional love. That first night, as Cailyn repeatedly interrupted my sleep, I laid there and battled the guilt of these emotions. The next morning, while I played with her, I noticed that she didn’t cry as much with me as with others. I’d walk her around and sing softly to her and I swear I saw her smile. I learned that some sounds got her attention a little more and she cried less when I rocked her a certain way. I recall picking her up from her crib, putting her over my shoulder and patting her back. Suddenly, her back went rigid and her head flew back…she was choking.

The nurse, who happened to be in the room, told me not to panic. She walked over and stuck her finger in Cailyn’s little mouth to try and clear the obstruction. After a few, never-ending seconds, she looked over at me and said to hit the red button. I immediately felt the impact of the moment and how this little girl needed me so badly; That I understood her more than anyone else in the world and she needed me to be her hero and that I just wanted her to stop hurting. In my adrenaline-induced stupor, I couldn’t even find the button. I slid out to the hallway and yelled.

“Help! Someone help! My daughter is choking!”

If love didn’t happen instantly, it grew quickly and was in full force shortly thereafter, as I learned the intricacies of her personality. She was “daddy’s girl” in every sense of the phrase. She laughed for me, she fell asleep for me, she LOVED the way I played and wrestled with her and she completely trusted me. I can’t count the number of times people watched, in awe of the way I’d launch her up in the air only to catch her coming down. She’d laugh hysterically, almost begging me to keep going with her smile. “Wow, she REALLY trusts you.” the onlookers marveled.

…and so she should. Daddy loved her and with that love, grew to hate anything or anyone that would do her harm. I knew that I’d never let anything bad befall her. I ran at and frightened a little boy at a playground, who hit her. I despised people driving too fast down the road, because they put her in danger. I avoided people with aggressive children, because I couldn’t stand to watch her get hurt…intentional or otherwise. There is no question I’d take a bullet for her.

Protection, however, becomes infinitely harder when the person you love and are trying to protect hurts their self. So often, I’ve stood helpless, watching Cailyn suffer. She bangs her head against the wall and floor, she hits her face and chin, she pokes her finger into her eyes, she bites her own arm, and scratches are her back, legs and stomach. A few weeks back, I was called to her classroom at church, because she was hitting her head and elbows against the wall. I took her to the car and drove around town to calm Cailyn down. I looked back and saw the bruises on her forehead and couldn’t help but be overwhelmed my helplessness. I tried pointlessly bargaining with God, offering everything I own to find the source of her pain, which was apparently so intense that she tries to numb it through more pain. I told Him that I’d gladly give my own life to take this obstacle of Autism from her. It’s a bullet I couldn’t take for her.

This afternoon, on Valentines Day, we had to take Cailyn’s iPad away because she’s been obsessive with it and won’t be social. Her intense reaction to not having it, only confirmed that we had to stick to this and not give in. She screamed and beat her head. When I made her sit in time out, she began scratching her stomach. She picked up a toy and jabbed it into her face and started kicking her feet against the hard tile floor. When she started banging her head and wailing at the top of her lungs, I could no longer compartmentalize my love for her and my hate for things that would hurt her…I just wanted it to stop.

I picked Cailyn up and (surprisingly) calmly walked her to the couch. I sat down and restrained her completely. I made sure she couldn’t hit or scratch or kick. She then resorted to pressing her chin against my face and then banging her head against mine. I looked at my wife, defeated, but simultaneously determined to break my daughter’s will. Amber looked back at me with an equally hopeless stare…one possible solely from the one other person in the world that has lived our life. We wanted to stop each other’s pain just as much as Cailyn’s. Finally, minutes later, her violence stopped. As I let her down, my baby girl, my heart…my Valentine turned and looked at me. It wasn’t a look of trust or safety…it was one of anguish. Although I had done everything I could to protect her, it was emotionally painful to her. I had become the source of her harm…and I then hated myself for it.

I sat there, staring blankly for the following few minutes, but my mind moving at breakneck speeds. Finally, I dismissed myself and walked to my bedroom closet. I sat in the corner, with my head in my hands and cried in a way that people only cry when they’re completely alone. I began heaving and leaned over, into the wall, when the door to the closet cracked open.

“Daddy?” Dalton, my three year old son cautiously asked, peeking inside. “What’s wrong?”
“It’s sissy.” I respond, trying to compose myself. “She hurts herself and I can’t protect her.”
“Oh…” Dalton stands for a moment, obviously deep in thought. “I can’t fix that problem.”
“I can’t fix it either, buddy. No one can fix it.”
“I have an idea.” Dalton says, and he bends down, grabs my hand and lowers his head.
“Bless mommy, bless daddy, bless sissy, and bless me. Help sissy not have Autism again and help her talk good forever and ever…amen.”
He sealed his prayer with a hug as his dad, three decades older, bawled in his arms.

After I had to restrain her, Cailyn wanted to be alone. She went to her room and told everyone coming close to “Go away.” I went to the store to pick up some groceries and came back home, still completely entrenched in guilt. I walked into the door, took off my shoes and coat, and went straight to her room. I was expecting the look of hurt and pain, but was instead met with a smile.

“DADDYYYYYY.” Cailyn growled with a smile and her eyes wide. “Piano. Want piano pees.”

For the next hour, I danced with her, I tickled her, and I threw her around, as she smiled. She jumped around and asked for more, begging me to squeeze her and falling off her bed, into my arms. A peace came over me, as I had a comforting epiphany. I didn’t feel safe because my parents said they would take a bullet for me and I never felt loved because they said it, even though they always did. As much as teenagers will throw words around, love isn’t communicated in words. Despite our smut-peddling entertainment industries attempts to try to sell it, love isn’t proven in moments of passion.

Love is the practice of placing someone else’s needs before your own so consistently that it becomes habit. Love is an empathy that hurts you more than the person experiencing the pain firsthand. Love is taking a moment to pick up a hanger from the floor when you’re running late for work, because you don’t want your wife to have another inconvenience in her day. Love is willing to take an iPad away and let your daughter (and yourself) hate you for a moment…for her long term well-being. Love is established through a lifetime of selfless action and results in a trust that isn’t shaken because of a single moment. It’s a language of it’s own and, in those moments, my daughter’s eyes told me that love’s translation surpasses Autism.

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Perfectly Different


Just days before Cailyn’s birthday and I’ve already been to the store multiple times. This trip was already nearing an hour and I’d seen every single individual toy in the building…twice. I circle back to an aisle so bright and pink that it makes me dizzy. I pick up items, one at a time and read the packages carefully, pressing each button and pulling every cord. I’ve excitedly grabbed and held about a dozen boxes for varying degrees of time, even making it the checkout line once, only to relent and painfully and carefully put it back in it’s place. On my way, I pass several people shopping for their own children. Sometimes, my face is so warm and my eyes so glossy, that I’m sure I’m completely transparent. One mother walks by with a jewelry creation set she just picked out with her little girl, barely older than Cailyn. I wonder if she realized she just passed the most empty person in the world.

Every holiday, birthday, and special occasion, I go through a similar ordeal. Each time, it’s a little longer…a little darker. Like many men, I work hard and sacrifice my time to make sure that my family is comfortable. Children don’t REALLY understand why their dad is gone for the majority of their waking hours. They don’t get mortgages, the price of utilities, or the fact that food isn’t free. The only tangible result of a man’s efforts, sure to make a kids eyes light up, is triumphantly throwing open the door and proudly exclaiming “I have a surprise!” Sometimes, after the hardest days of work, I’ll bring something small home for the sole purpose of being the hero of the evening.

I can walk into a room and instantly identify something that my son will love. We intentionally get him things to stimulate his growth, while still playing to his interests. Cailyn, is a different story. Our home is littered with unused toys that we’d purchased, in the hopes that it could spark a more typical interest and potentially move her along in development. At one year old, we got her a train for fine motor growth and she sat there all morning, looking at the bottom and spinning the wheels. Her second Christmas, we bought a kitchen set for pretend play. Instead, she found the button that triggered sounds, promptly ripped off the oven door and just pressed that. These were actually success stories, as most of her gifts just sit unused. She’ll open them up and promptly toss it aside.

I dream of Cailyn playing with dolls, brushing hair, making jewelry, or modeling a dress. I’d pay a fortune to walk into her room and catch her playing out a conversation between two of her animals. I’d die a happy man if she could someday bat her eyelashes at me, because she wanted an expensive outfit…which I’d then promptly purchase, against her mother’s wishes. Instead, Cailyn goes for light up and sound-making trinkets. She’ rather hold onto disassembled, colorful plastic pieces, than to play with them as part of the whole toy.During Christmas time, I’ve begun taking for the “giving tree” and intentionally picking items for girls her age. I buy things that I wish I could get for Cailyn and I often pretend like it’s FOR her. Each time, I drive home feeling as though I’ve done something deeply disturbing. I sit in the garage and wipe away the lines of tears on my face, until I’m convinced that I can pass Amber’s inspection, when I walk in.

That is when this birthday became different. Immersed in another reminder of my daughter’s difference, I gave in to another warring faction in my mind. As if it were an army bursting through the gates of a fortified city, my demeanor turned. I immediately ran for a plastic magnifying glass I’d seen, earlier. I then ran to the candy and found something we’d usually not let her have. These were small things that she would love, to go along with other non-typical gifts she’d be getting for her birthday. I got home and immediately walked through the garage and into the house. Amber saw right through me and we held each other for the next few minutes, crying. It was definitely sadness, it was perhaps even more shame. It was the most recent instance of me casting aside selfish denial, in the best interest of Cailyn. I was no longer forcing my 30+ years of social conditioning on her, instead acknowledging and embracing the things that made her unique.

Every time that I’m convinced I’ve come to grips with Autism, I’m simultaneously and unwittingly entrenched in another battle that will eventually shake me to my core. Each of these are only symptoms of the larger war. While Cailyn has most, if not all, of the basic needs of any person…she’s operating on a different plane. Like two opposing wheels of a car, Cailyn is perfectly different. She and I turn together but our realities are engineered to never meet. The only way for us to exist together is through the pain of one or of us both. While there is a time and a place for her to come into my world for the sake of her growth, it’s even more important for me to grow by sacrificing my own comfort to give her the gift she really craves…company.

A few weeks ago, I hugged my wife and said “we’re the only ones in the world that understands what the other has been through.” In that moment of relative loneliness, I was hit with the realization that Cailyn is the one living Autism…and NO ONE understands her. Cailyn lives in a world of her own making. She isn’t privy to the norms and constructs of our world. She can’t communicate to anyone and likely never completely understands the depths of her own feelings. Society tries to change her and her needs are unintentionally marginalized by the ones, who claim to love her most.

So my growth as a husband, father, and man must shift. Instead of trying to “fix” my unbroken daughter, I need her to know that I’m her place of safety. I can no longer gift from my heart, but demonstrate through gifts that I know HER heart. Instead of asking her about her day, I take the time to sing her favorite songs. Rather than having her mimic me, I’ve memorized and now repeat the language that she uses. Since the day she was born, Cailyn and I never had the same outlook on things like language, gifts, or fun. She says “I love you” because Amber and I say it, but she expresses her love in smiles and squeezes. So, when I get stuck in my world, hung up in the differences of Autism and how life hasn’t lined up with my superficial expectations, I am simply fulfilling my own prophesy of separation and depression. As I move throughout the house, obsessed with myself, I could be walking by her room without even realizing that I’ve just passed the most empty person in the world.

God, give me Your eyes, that I might see her as You intended; Perfectly different.

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