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.


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 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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“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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It was late January, and I was on a yearly business trip. About mid-way through, I learned that Cailyn was sick. With each passing hour, I followed up more and inexplicably became more concerned. I was a thousand miles away and felt so helpless. I packed my suitcase a day early, so I could leave on a moments notice. I must’ve seemed distracted, because a coworker called me the night before we were scheduled to leave, with an opportunity to hop a corporate flight back…provided that I was ready to leave right away.

After finalizing the details, I rushed down to the lobby and called Amber on the way. Her reaction was more worry than relief. She assured me that Cailyn’s temperature was down before she put her to bed, and that she was doing better. I had left my old car at the airport exposed, somewhat low on gas, and we were dealing with sub-zero windchill back in Ohio. On top of it all, I’d be traveling on a late night flight in less than perfect weather conditions. Amber was worried and almost talked me out of the trip, but I decided to leave anyway and eventually made it home without issue.

The next morning, I was awake before Cailyn, which was odd. After an additional hour waiting, I went to her bed to check on her. When I found her, she was unresponsive. We rushed Cailyn to the ER and she was admitted to the hospital for multiple nights with a severe case of the flu and croup. The doctor was direct in his diagnosis.

“She’s in pretty bad shape and her oxygen is dangerously low. I’m glad you brought her in, when you did…she may not have been able to wait much longer.”

Nothing in life is more frightening than uncertainty, especially in situations where we lack control. Somehow, watching a recorded game is less gut-wrenching than a live one, even when I don’t know the result in advance. The decision has already been made, the path set in stone…the future known. It feels as though the limitless permutations are removed and the result no longer in doubt. Similarly, the scariest part of a suspenseful movie is BEFORE you see a villain pop out, when the hero is walking from darkened hallway to darkened hallway and nothing bad has actually happened…only anticipated. For much of my childhood, I was completely paranoid of roller coasters, without having ever actually been on one. Only when I finally rode one, did I discover that I wasn’t actually afraid of coasters, rather the idea of riding them.

There is a comfort in knowing our favorite TV characters are likely to to be scripted into the next episode, or that statistics are strongly in favor of surviving the next amusement park ride or airplane landing. Unfortunately, the statistics for a child with “severe” Autism aren’t quite as friendly. Every night for nearly 18 months, Cailyn would wake up between two and four o’clock in the morning, crying and screaming. We slept whenever we could, because a restful night could never be assumed. We felt almost terrorized and completely defeated. More recently, we went through a half dozen whole-hearted attempts to potty train. Each time, giving up after a couple weeks and numerous changes of clothes because she “just didn’t understand.”

Each of these seasons of our life were demoralizing, seemingly without script or hope. Only in retrospect can I look back on them and see the beauty and growth in the trials. The most recent of which resulted in every door and comfort in Cailyn’s outside-of-home life being stripped from her in the matter of months. Her teacher and aides were changing, we’d moved to a new church, and we were moving to new outside therapy programs. To make the situation more tenuous, we’d decided to move schools and every door we sought, seemed to slam in our face. Instead of pushing them open, I implored Amber to wait for the open one. We’d been down this road and I had a peace that everything was going to work for the better.

Within a week of Cailyn transitioning to the new (and public) school that was honestly our third or fourth choice, we received a note home that they were willing to be consistent with potty training, if we were willing to send her in underwear. This was a sensitive topic around our home. Amber broke into bittersweet tears when Dalton, although two years younger, was using the restroom before his sister. The hope was refreshing, but the uncertainty was stinging. Only a few weeks later, I was sitting at home when I heard Cailyn walk into the restroom. I ran in just in time to see her flush. She hasn’t had an accident since. One day, she looked at me, smiled, and said “daddy proud.”

Through Cailyn, I’ve discovered that fate is merely a cosmically impossible series of events which, in retrospect, work in perfect synchronization to save us from ourselves. Every new teacher, impossible task, change in school or church, or other adjustment in Cailyn’s life has been a gateway to improvement. Each mile marker on her journey was facilitated by a moment of crisis, not accomplished in spite of them. Every tear of pain has been book-ended by one of thanks and joy.

The Earth is full of people, asking for a sign. It’s natural to want certainty and guidance in storms. We seek any indication that we are valued, accompanied…known. In reality, these signs rarely come as a flashing light, burning bush, or hungry whale. Instead, they are revealed by examining the past as series of events, each of which absolutely foundational to our current existence. Although sometimes painful and perhaps unscripted, the guidance is undeniable. Whenever I’m feeling fulfilled, I can’t look back at any of my trials without realizing that my more abundant life would be impossible without having experienced them. When I’m suffering, I’ve come to accept that it will eventually be a pivotal season in reaching my next peak. I can have this assurance because I see evidence that I’m playing a role in someone, whose end purpose is bigger than my own…and you can’t plan the end without planning the means.

When Amber and I were dating, we talked about a lot of the things that a serious couple would/should. One of the most important topics was children. Initially Amber wanted two or four children. Although she had this number, she only had one name. She said that, if she had a girl, she always wanted the name to be “Cailyn.” Just as though I’m watching a game with the outcome set in stone, or a movie, wherein I know the hero is victorious, it gives me peace. It is yet another sign that, even before I was entrusted with her life…Cailyn was known.

The Heroic

But truly, women are amazing. Think about it this way: a woman can grow a baby inside her body. Then a woman can deliver the baby through her body. Then, by some miracle, a woman can feed a baby with her body. When you compare that to the male’s contribution to life, it’s kind of embarrassing, really.
-Jim Gaffigan

As long as I’ve known my wife, Amber, her passion has been singing. “Passion” almost doesn’t seem like a strong enough word. It’s been her dream to sing since she was in grade school. She’s followed the rainbow from Ohio to Missouri, Phoenix and back again. She’s invested thousands of dollars and hours into her pursuit. It’s a longing so strong that she prays about it every day…it sometimes even wakes her up at night. Before I ever met my wife, I heard her music…and her dream has never been unreachable. She is AMAZING. So, you can imagine my surprise when, a couple months ago, she came to me one day with a revelation.

“I feel like I should give up my music.”

She explained that she wanted to see change in Cailyn more than anything else, and that her pursuit of singing had occupied a space in her life that she felt led to sacrifice for the love of her daughter. In the weeks since she made this commitment, I’ve seen more positive change in Cailyn than in the prior year…and I’ve seen more joy in Amber.

The word “hero” is thrown around a lot, these days. The term took on a new meaning for me, when I returned home a few days ago. I grabbed the mail, walked into the house and saw Amber patiently working with Cailyn on her tracing. There was food cooking on the stove and Dalton was going wild around her. There were chalk drawings outside, she had cut the lawn, cleaned the house, and the laundry was in the final stages. Just then, I looked over at the bills in my hand and realized that I couldn’t remember the last time I’d written a check. If a “hero” is defined by a person, who gives up their life for another, then I am certain I married one.

She isn’t alone. It takes a hero to commit 31 years out of the prime of her life to selflessly and gracefully raise four strong-willed and often ungrateful children. It takes a hero to battle the day-to-day stress of restaurant ownership, knowing that the demands at home will never allow her to “punch out.” Heroes commit to their children, sometimes working multiple shifts to provide when the father walks out. Heroes decide to keep, love, and protect their unborn child…even when the doctor discovers birth defects. A hero carries their baby with care for nine months, knowing that she’ll have to give it up to someone else, so it can have a better life. It requires a hero to cope with, let alone thrive in, a home with a child who has special needs.

A few days after we took Cailyn home, I called my mom. The conversation went something like this:

“Mom, you did a lot of things wrong with me, but you were just a KID. I only now realize that you had absolutely NO idea what you were doing, but I can see that every decision you made was with my best interest at heart, because you loved me. I guess it’s life’s greatest injustice that we never understand how much our parents love us until we’re out of the house with our own. I can only hope that Cailyn understands these things and makes this same call to me, someday.”

There are millions of strong, capable, and talented women with dreams. So many of them have sacrificed youth, ambition, and personal freedom to guide new life through an unforgiving world…and, quite frankly, to perform feats that leave their husbands in pure awe.

Though their personal passions and dreams never fade, they are surpassed by a love that overwhelms self; A bond that is developed during overnight feedings, wiping butts and runny noses, kissing boo boos, breaking fevers, driving to events, waiting up all night; One that could only be formed by having another human living INSIDE of you for nine months…a love that defies the explanation of man, because it is unique to mothers.

When you compare that to the male’s contribution to life, it’s kind of embarrassing, really.

Happy Mother’s Day!

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A Road Paved with Never

“Based on these test results, Cailyn is extremely delayed…based strictly on what we’ve observed, I can’t say that I would expect her to communicate verbally; certainly not in sentences.”

We quickly learned that the depths and complexities of Cailyn’s capabilities couldn’t be so easily summarized by anyone. Just months after hearing that Cailyn wouldn’t speak to us, her first repeated word (“bubbles”) was triggered as an incentive to play with bubbles. Her second, third, fourth, fifth, etc. all followed within minutes. She could suddenly say ANYTHING and it was as simple as a switch “on.”

This was no anomaly, but the beginning of an emerging pattern: Cailyn was only a single connection away from an exponential jump in progress. One day, while playing with a Christmas gift, we captured another amazing moment on camera as Cailyn spontaneously used a sentence. As she began to place a car sideways to go down a ramp, she realized it wasn’t going to work. She turned it around, made sure she could see the headlights and said “Car goes like this.”

The search was on. If incentives and toys could flip the light on, we were going to try anything and everything to jumpstart another achievement. Unfortunately, Cailyn wasn’t exactly able to communicate the things she loved. We began a painfully long and expensive cycle of trial and error, where we would buy anything if she showed interest. We’d give families gift ideas for birthdays and Christmas, only to get the same response.

“All done.” Cailyn would say, pushing away the item.

While she has made progress using the word “yes,” Cailyn doesn’t understand the abstract concept of “no.” Negatives are actually quite complex. The word “not” makes an entire statement into the opposite. We learned that Cailyn wouldn’t respond when we asked her not to do things, so we had to give her positive reenforcement to perform another task, instead. So, as opposed to asking her not to hit herself, we’d instruct her to put “hands down.” Cailyn can’t even tell us when there is a problem, she only knows solutions. Instead of telling us when she doesn’t feel good, she asks for “medicine.”

Over time, we’ve slowly happened into items and incentives that have led to miraculous gains. Equine therapy sparked her ability to follow multiple-step instructions and resulted in tear-free fine motor gains. Cailyn’s therapists had worked with her fruitlessly on tracing, when we discovered she responded to an iPad tracing game using stars as points. When her teachers used stars, she excelled. Now, we’re using numbered points and she’s connecting the dots. Her love for suckers have even led to her beginning to spontaneously and independently use the restroom.

Progress is rarely overnight. To get Cailyn to ask for things she wants, we started by letting her pick a picture on a set of cards. We moved on to labeling these items in the house, so she’d take us to them. Then we took off the labels. When she learned to repeat words, the labels became vocal. Then we began making her use the name of the item, even when she couldn’t see it. Now, we make her use sentences, ask her to be polite, and are pushing adjectives. It’s a beautiful thing to hear the toilet flush, see Cailyn run in without pants, and then hear her speak…

“Mommy, I want sucker, please. Pink. Yes.”

Cailyn should not talk; She’d never use sentences. She can not go to Kindergarten and could not keep up in a typical class. Cailyn is not fit for a job, can not meet a boy, and will not live independently. These are the things we read, see, and are told every day…even by our subconscious, in dreams. In a moment of vulnerability, I might admit to having believed every one of them.

Cailyn’s journey is littered with impossibilities, riding a road paved with “never.” She’s surpassed each of these expectations; relegating unrealistic milestones to her rear-view. Step-by-step, and sometimes in leaps, Cailyn is defying every one of us and becoming the girl I was afraid we’d never see. She doesn’t know your limitations…

…because Cailyn has never been good with negatives.

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Burn the Fleet

I’m anxiously pacing down the hallway with Cailyn’s hand firmly grasping mine. Sometimes she’s excited, prancing beside me and giggling uncontrollably. She may also be upset and need comfort, begging me to hold her in my arms and pat her back. Cailyn’s mood, however, is as fragile as it is pronounced…and her mood for the rest of the day may be dictated by the next few moments. It’s a regular trip that I anticipate and often dread…the moment when I discover who will be watching my daughter.

Sometimes, we’re blessed with individuals who have a passion for Autism and Cailyn. These people (you know who you are) have impacted our lives and brought us joy, that we can never fully express. Other times (especially in new places) we’re met with confusion as we try to summarize the complexities of Cailyn’s particular spin on Autism, into a 2 minute conversation…all while a dozen other children are racing around playing in the background.

“Ok…are you planning on any loud sessions? If so, she’s going to freak out and need to be away from the others.”

(Blank stare)

“Here is a brief summary of words that you may not understand from her, but may be the difference in her being manageable or screaming and hitting herself the entire time…Snacks are in her backpack with the diapers. Did we mention she isn’t potty trained?”

(Eyes widen)

“Here are some signs that she may be starting to melt down…If any of these begin, she might ask you to hold her. She uses closeness and touch to calm herself down. Are you by yourself, today?”

(Mouth now beginning to hang open)

“Please come get us if there are problems.”

It’s a “no win” situation. Cailyn naturally has a more difficult time with the unfamiliar. Unfamiliar kids, unfamiliar teacher, unfamiliar classroom, unfamiliar time…all can trigger extreme anxiety in her mind, which manifests itself in behavior that an unfamiliar teacher doesn’t often know how to manage in a five year old. It isn’t fair to any party in the transaction and the results are often very similar. I’ll walk back to the class and Cailyn will be in the corner all alone, while the other kids are engaged in activity with the teacher. She’ll already have her coat on (who knows for how long) and her diaper will be soaked almost through. She runs to me, wants to be held, and can only say a few words…

“Car Seat. Please. Bye Bye.”

We can’t maintain a lot of friendships. Most people grow tired of the overhead that comes with family time. We don’t do ANYTHING on a whim because the benefit of joy in any last-minute activity will be negated by the price we pay for a lack of preparation and forethought. Most houses aren’t Cailyn-proof, so going to other people’s homes can be a tedious exercise of head-swivel and saying “No. Don’t touch.” It’s just not worth it. Such is the life of a family with a young, special needs child. We’re separated from the norms of everyone else.

So, the next time we’re a little too quick to correct our children, it’s not that we’re “high strung.” When we don’t make an effort to get together, it’s not because we think we’re better than anyone else. If we get overwhelmed by the thought of last second plans and opt-out, it isn’t that we’re aloof or “no fun.” When we don’t go to events, whether private, charity, or church…it’s not a flippant decision to be separate. It’s a calculated sacrifice to hold onto the last beacon of sanity in our lives. What everyone else sees is nothing more than a fleeting glimpse into every moment of our new lives.

While you may be encouraged by gathering with others and singing a song, remember that I just dropped off a person I love (much, much more than myself) into the hands of people who don’t understand her; Into a place where she may be sad, scared, neglected, unwanted, and confused. Then, with that knowledge, I’m asked to stand, sing, and praise the God that permits it to be. Fellowship and community can be a supplement, but just as easily a barrier to faith.

I’m not targeting anyone, but speaking about our general state of mind and the existence of some families battling Autism. Over three years ago, our lives set out on an entirely different path. We’re no longer citizens of your land. We’ve embarked on a lifelong journey, the perils of which have no basis for explanation in your tongue. We wake under a different sky, fall asleep to a more ominous moon, and each moment in between somehow feels different because Autism can reach up and pull the rug out from any moment of serenity. In spite of this, we press forward because the love for our daughter overwhelmed our desire for normalcy. We set our sails ablaze…and here we will remain.


Autism Awareness

Wednesday, September 22, 2010 at 7:40pm EDT
Craig Holbrook updated his status.
Peace, be still.

This was the day; the moment that I knew that my life would never be the same. It was at this time that I KNEW that my daughter, Cailyn, had Autism. In an instant, I set out on a journey of ever increasing awareness for a cause which, just days earlier, didn’t even register in my consciousness. We all do it, to an extent. If our minds weren’t able to filter out the ever-present white noise of pain surrounding us, we’d all just stay in bed. That is why we have “awareness” days. It’s not to burden everyone with a cause, but to plant a seed of remembrance into your mind…so when the situation arises, you are equipped to bring a moment of peace into the life of someone in turmoil.

Sometimes, I feel like we all are guilty of glamorizing the journey. We sensationalize the miraculous woman with Autism, who has a doctorate and is wildly successful. We celebrate the news feature about the non-verbal girl, who writes novels. We watch American Idol, a national anthem, or an ESPN video of a person with Autism, root for them and shed a tear…so we’ve done our part for the day. We’re a nation of armchair advocates, living blissfully unaware of the real lives of others. The fact of the matter is that estimates now place one in every sixty-eight children on the Autism spectrum…and most of their parents will never see their child’s daily victories go “viral.”

“There is no true despair without hope.”

Many reading this blog have been privy to the wonderful things that Cailyn has done. She’s truly made progress beyond what we were told to ever expect. I feel blessed for that. I’m grateful to have been given the opportunity to guide her, love her, and protect her. What you haven’t seen, or haven’t been told, is the day-to-day fight of having a child with “moderate-to-severe” Autism. No one wants to hear the story about a five-year old child that can’t be left alone, because she’ll poop herself and smear it all over her room and eat it. No one wants to think about a child that can’t put herself back to sleep, so she wakes up in the middle of the night, every night, for months on end. It makes you uncomfortable to read about a girl hitting herself, banging her head against a wall, and scratching her face when we ask her to say her name or restrict her iPad time. We avoid going to homes of other people, because we’ll do nothing but try to keep Cailyn from hurting herself or breaking things. We can do very little as a full family, because Dalton’s presence alone often throws Cailyn into a spiral of screaming and crying. We limit trips to stores and almost never go to restaurants, because we get looks and comments from people, who don’t think Cailyn “looks Autistic”…whatever that means.

Maybe I’m too freaking sensitive. Then again, maybe you’d be on edge too, if you dealt with your child running off in public, knowing full-well that she couldn’t even call for you or tell someone her name. Maybe you’d get a little testy every time someone tried to suggest one of her challenges are similar to that of all children. Maybe you’d be paranoid if you had recurring dreams about having someone watch/teach/care for your demanding child, only to have the person you trust harm or neglect her…and she can’t even tell you. Maybe you’d hate yourself…just a little…if you felt jealous seeing another man having a good time, talking with his little girl.

I can only now bring all of this up, because many of these are ghosts of our past. We’ve found ways to cope with the challenges, Cailyn is making wonderful progress, and Amber and I act as each other’s therapists…each one strong, when the other is weak. We constantly see hope in Cailyn’s achievements and those of others in the community, for whom we sincerely rejoice. Simultaneously, we are humbled by our blessings, as we’re confronted daily with families, who have it far worse.

I know Cailyn. I love her. I see things that many of you could never see. That is why I can never go back to being an armchair advocate. I balance husband, father, employee, and many other roles, but I’ll count myself blessed to be known as Cailyn’s dad. There are millions of parents, grandparents, siblings, friends, and families of children with Autism, who feel the same way. They don’t buy a colorful light once a year and forget. They live a life where disappointment, frustration, and despair hit like the drip of a leaking faucet but the love for another overwhelms their desire to quit…so they limp to the next day.

You can make a difference in the lives of these people by:

  1. Knowing the signs of Autism and having difficult conversations with people you love when you suspect there may be an issue. Early intervention is the key.
  2. Staying informed of Autism-related legislation and taking the time to write or call in support.
  3. Donate your time and resources to local special needs organizations or reputable research and advocacy foundations.
  4. Support frustrated parents of children acting out in public, when you encounter them. Take a moment to empathize and make them feel human, instead of an annoyance.
  5. Sharing this information with your family and especially with your children, so that they have a foundation of treating those who are “different” with respect, love, and kindness. If there is one thing I’ve found, it’s that none of us will “defeat” Autism. With a little awareness, however, you may just be able to bring some hope to the day of an exhausted parent or frustrated child.


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