Tag Archives: Life

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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A Life Less Frightening

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

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

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

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

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

Except no one plans to have a child with Autism.

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

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

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

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

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

I was invested, again.

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

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

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

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

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

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


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The End of the Beginning (Part 9)

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

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

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

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

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

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

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

One day, while playing with a Christmas gift (correctly, I might add) we got another amazing moment on camera and shared it with the Facebook world. Cailyn spontaneously used a sentence! As she began to place a car sideways to go down a ramp, she realized it wasn’t going to work. She turned it around, made sure she could see the headlights and said “Car goes like this.” She has now begun to consistently string words together. She’s asking for things with sentences, instead of with a single word. She began school, today, and we’re expecting even more.

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

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

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

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Over the Rainbow (Part 8)

There is a calendar function on “Rethink Autism” that allows a family to track therapy sessions. It was very satisfying to look back on the months of March and April. The calendar was full of color and each day was full of completed activities. It was tangible progress.

Let me stop this for a moment. I’ve found that dealing with Autism is a very emotionally charged and subjective experience. A single event can impact your entire week and will distort your view on the prognosis. Some days, you’ll feel as if you are on the right track and others it will feel like you’ve spun your wheels for months. This makes it absolutely critical that you track progress in an objective manner and take video of milestones. Similar journaling tactics can have a positive impact for almost anyone, but I can not stress it enough for a parent fighting Autism. Someday, you’ll be depressed out of your mind and need to look back to remember how far you’ve come. It helps to even out the ups and downs to focus on the “trend.” Back to the story.

Looking back at the calendar for May and June is much more sobering. The first two weeks with Dalton were spotty and the frequency continued to decay until it eventually faded into complete blank. We still did unstructured teaching, but didn’t have time to track it. Cailyn was continuing to regress and rebel. She began to fight sleep at night and would scream, waking us and her brother. She was still refusing to do tasks that were basic to her before and she was hitting herself and biting more frequently.

Children that hurt others can be easily dissuaded from their actions, but how do you separate a child from herself? Watching the frustration and pain in her eyes as she bites into her own flesh was torture to us. We were helpless to stop it. The teeth marks and self-inflicted bruises that lined her arm were reminders that the joy was fading from our relationship with Cailyn. We needed something more than ABA alone. We needed to try to calm her behavior.

Amber had been reading all of the Autism material she could get her hands on. That included success stories of children with Autism. She was determined to try anything to help. As a result, she started Cailyn on a Gluten-free diet.

I’m not going to profess to know details about all of this. I’ve had conversations with my wife and medical professionals about any things we try with Cailyn. I enter every decision knowing potential benefit, risk, and risk mitigation. I will not, however, try to convince anyone else to try something for their child. I only serve to bring up things that helped us, so that you may also decide to have a conversation with someone much brighter than I.

Within a week of going completely gluten free, we observed Cailyn’s behavior to improve. We began to doubt what we were seeing. Was it placebo effect? Maybe. Then she started to grasp communication through sign language, which was never successful, before. Then, one day Amber was blowing bubbles for Cailyn and asked her to say “bubbles.” This was no different from an aberage day’s sequence but what followed would leave us with mouths agape.

Cailyn responded “bubbles.”

As you know, Cailyn had been making sounds and even saying full words to identify certain things. Primarily, this involved flash cards, letters, numbers, and colors. It also always happened on her terms. We could never get her to repeat anything, nor could we convince her to make a sound. We just had to be ready to react, when the sound came. By far, our longest running therapy test was to get her to repeat a simple sound on request. We went for months with almost universal 0/10 failures on that activity. She never passed a trial.

We blew some bubbles and tried again. Again, she repeated “bubbles.” We started asking her to say a ton of other things, “hi”, “happy”, “pretty”, “love”, “shoes”, “please”. She could suddenly do it all. It was like a light “flipped” on. We took a video and posted it on Facebook for the world to share in our triumph. July 9th was one of the proudest and happiest days of my life.

A few weeks later, I was in New York for work. After a week away, I came home and was greeted enthusiastically by my daughter. I began to sing. As terrible as I am, I sing to her because I had discovered that she would maintain complete silence and eye contact for certain parts of particular songs. I started with her favorite:

“Someday, I’ll wish upon a star and wake up where the clouds are far behind me. Where troubles melt like lemon drops, oh way above the chimney tops. That’s where you’ll find me. Somewhere, over the rainbow blue birds fly. If birds fly over the rainbow, why, oh why can’t I?”

A second after I finished, Cailyn’s voice breaks the silence.

“So where owa wa waybow bue bird fly.”

Amber, Cailyn’s grandparents, and I all sat there in stunned disbelief as Cailyn just smiled.

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Season of Change (Part 7)

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

“Honey, my water just broke.”

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

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

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

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

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

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

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

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

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

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

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

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

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

“I can’t handle this anymore.”

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Amber Strikes Back (Part 6)

After our appointment with the child psychologist, Amber and I took some advice he gave and subscribed for a free trial to “Rethink Autism,” a service that empowers parents to do ABA therapy at home. We also applied for additional outpatient therapy for Cailyn. We were determined to do things using a methodology that was proven to work. Although we understood the importance of getting professional services, we knew we would have far more time and impact with her than anyone else. We needed to be therapists at home.

I’m not going to pretend to be an expert on ABA therapy. I can only speak from our personal experiences. The basic principals are repetition, hand over hand demonstration, repetition, positive reinforcement, and repetition. Although your ideal ABA therapist is specially trained on techniques for teaching Autistic children, a supplementing support system at home is critical, as it creates continuity and (you guessed it) repetition.

We both worked with Cailyn a lot, at first. After just a day utilizing ABA techniques and having video instruction, we got her to respond to her name for a bite of a graham cracker. She progressed to coming across the room when her name was called. Soon afterward, she would do it without a reward.

The results sold us. Amber was home far more than I and she soon began to develop a passion and gift for teaching Cailyn. We decided to sign up for a year subscription and were soon pouring countless hours into therapy. This often involved four to six hours of what we called “focused” therapy, where the teaching took place in our home office with the door closed. We bought a miniature table and chair for the room and determined it would only be used for ABA instruction. This helped Cailyn delineate between play time and learning time. There were short breaks in between, but these sessions were largely a structured marathon. Each lesson was planned, each trial charted, and every success celebrated.

Early results were positive. Cailyn was listening and performing basic tasks. Soon, these practices became habit and seeped into our everyday interactions.

Just a few weeks after the first appointment, we had to return to the psychologist for the results of the testing. This involved placement of Cailyn on the Autism “spectrum.” Amber was convinced Cailyn would be placed with high functioning Aspergers, due to her proficiency with letters and numbers. I tried to prepare her for an Autism diagnosis in the “moderate” range. Either way, we were determined not to make too much of it. Cailyn had come a long way since these tests were run.

We shared our progress of the last few weeks with the doctor as we sat to conduct business. I remember opening the report and completely tuning him out. For me, it was about the cold, hard facts. I began to scan through the pages and charts. Let’s just say that Cailyn wouldn’t need a Sherpa guide to reach her flag on those bell curves. Finally sick of the numbers, I wanted a summary.

“Doc, (I didn’t actually call him that) where exactly does this all place her on the spectrum?” I asked. His answer was complex.

“Based on our assessment, she definitely doesn’t fit with an Aspergers diagnosis. We’re talking Autism and in the severe part of the spectrum. With the progress you’re seeing, maybe just on the line of moderate to severe.”

He must have seen our faces go pale, because he offered a ray of hope.

“Cailyn is extremely young to get this diagnosis and I can count on one hand, all of the families I’ve seen that have done what you two are doing for your daughter. Literally, I can name the other four. It’s rare that we see this level of commitment at home. You really have the opportunity to move the needle significantly.”

Over the course of the next few weeks, Amber kicked therapy into full gear and we began to see some of the most amazing progress to date. Cailyn was imitating tasks, stacking blocks, matching items, sitting and waiting. It’s truly amazing to see a mother so possessed. The success seemed to only increase her drive.

Although Cailyn was generally trending positively, therapy was a long and emotionally draining process. Many times there were hours of crying, screaming, and biting…on better days. She also had some really terrible times, where she suddenly lost the ability to do everything that she had learned. There were also so many concepts she couldn’t grasp and she was still nowhere near talking.

…And she was about to become a sister.

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You Do All Things Well (Part 5)

Many of you reading are absolutely shocked to see how far this story has gone without Amber playing a prominent role. The most simplistic explanation I can give is that Amber was in denial. She still seemed convinced that this would all just correct itself. At that time, we didn’t talk much about how we were feeling, even to each other. It’s for that reason I can’t exactly say what wars waged in her mind.

If you haven’t noticed, women are different from men. I won’t even attempt to explain women. I’d have a better chance of developing a cure for Autism while riding on the back of a dinosaur I cloned. One thing I do understand is that birthing a child comes with a different emotional attachment. Something that creates an endless capacity for sacrifice and heightens empathetic responses. As hard as this all hit me, Amber was even more deeply affected. It had knocked her out.


On the early afternoon of February 10th, 2009, we had reached a crisis point. Amber had been pushing for well over an hour, but time stood still as I watched my wife and daughter’s life reduced to numbers and blips on a computer screen. Amber’s blood pressure was dangerously low. Cailyn’s heart rate spiked and then dropped to abnormally low levels. Amber began to lose consciousness. She kept falling asleep and had to be slapped in the face to wake up and push. She just kept whispering between her chattering teeth “I’m cold.”

Behind me, the doctor asked the nurse to prepare for an emergency Caesarean. The doctor told me that she only had a few more pushes. Never one for theatrics or motivational tactics, I summoned my best “game face.”

“Amber, wake up. I know you are tired and cold, but this will all be over in a few minutes. Can you give me another push?” I asked
She simply nodded.

The next push was all she could muster and it left her crying, yet struggling to keep her eyes open. “I can’t.” She cried. “I’m cold.”

I amped it up a notch. “Amber, you CAN do this. You only have a couple pushes and it will be all over. I want to hold my daughter after the next push, okay?”
“Okay” she said as she weakly nodded back.

Amber pushed so hard that she couldn’t sustain it. She let out a breath in the middle of the contraction and screamed. “Alright” the doctor said “We might be able to do this, but it’s going to take a really good push. Can you get her to give us one?”

I remember glancing over at the vitals of my two girls, hearing the alarms, and being scared out of my mind. I patted Amber’s cheek to get her to wake up, put my hand up to the side of her face and wiped her hair out of her eye. “Honey. You have one time to make this happen. Cailyn’s going through a lot, right now. She needs you to give her the hardest push you can. Can you do it? Can you give one more for Cailyn?”

The doctor interrupted “Ready…Push!”

This time, Amber closed her eyes and summoned every ounce of energy in her. I’ve never seen such determination. The doctor had the vacuum and was working as we all coached “Go, Amber! You’ve got it!”. Finally, I heard her lose her breath and scream, again. Only this time, it was followed by a baby’s cry.

We had music playing in the background throughout labor. I’ll never forget the song that was on as Cailyn entered this world.

“You Do All Things Well”

None of us were prepared for the complications of childbirth or of raising an Autistic child. We were just scared kids throwing things at the wall and hoping they’d stick. As I’d later find out, Cailyn had her cord wrapped around her neck three times. Amber shouldn’t have been able to get her out on that push.

I should have known. Amber hits the hardest when she’s told that she “can’t.” A two year old with Autism and a husband at the end of his rope were about to find out just how hard.


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Giants in the Land (Part 4)

“My daughter has Autism.”

This was the first thought of my mornings and the last of my nights. Unlike so many other events in this sequence, I can’t tell you when exactly it started or ended, because the phrase became part of my morning routine. I’d stand in the shower and just stare, until the loss of hot water woke me from my trance. Until that fateful trip to the hospital, this seemed like a winnable battle. Now, hope was harder to find.

I can’t tell you how long we just felt sorry for ourselves, but neither Amber nor I really pressed the issue for the next couple weeks. That was, until Cailyn began doing startling things. It started with alphabet refrigerator magnets. I remember being so upset that she wouldn’t play with them correctly. Instead, she wanted to carry them around and would build a small stockpile in her room or at the couch. One day, as I went to pick up the line of magnets she left on the floor, I noticed the letters were all in alphabetical order!

Okay, so my daughter is twenty months old and we’ve just discovered that she knows the entire alphabet. Maybe we just needed to encourage her in areas of her interest. Sure enough, as we began working with her, she began to SAY the alphabet. This interest spread to colors and numbers. We got to the place where she could recognize, organize, and say them.

We bought other alphabet toys, floor mats, books, and worked with her constantly in these areas. To top it off, we discovered that she loved iPads. She was interacting with it and playing educational games. Even though these activities were on her terms, we felt like we were beginning to gain control again. We were much more confident heading into our appointment with a child psychologist, who we expected to give us the news that Cailyn was highly intelligent, but would need some social therapy to begin functioning at a high level.

Little did I know that day would be the new worst day of my life.

We, again, watched as Cailyn failed test after test because they couldn’t get her to respond or pay attention when they said her name. In our post-assessment meeting, the psychologist watched as she arranged HIS alphabet magnets and recited them. He said her name, twice. She didn’t even flinch.

We were advised that letters, numbers, and colors should be withheld from her, because they were obsessions and distracted her from reality. Instead of just building her intellect, we needed to encourage her social responses. The psychologist gave us a mountain of materials and plenty of advice on how to proceed.

We had four months between our two major evaluation appointments, and they seemed completely wasted. Now, we were dangerously close to the birth of our son, with very little one-on-one time left to correct behaviors.

Amber drove, and I began reading the paperwork in the car. I flipped to case studies of other Autistic children, where I read about a boy who was finally able to live a relatively normal life after years of Applied Behavior Analysis (ABA) therapy by a team of professionals. This was all meant to be encouraging, but it knocked the wind out of me. You see, I naively assumed that Autism could be caught at a young age and “cured” while the child was developing. It never crossed my mind that she would live with this.

When we got home, Amber had to leave for another appointment and I was left home with Cailyn. I decided to try to work with her on activities they tried at the psychologist’s. I couldn’t even get her to respond to her name, because she wouldn’t look away from the fridge with the alphabet magnets.

Months of emotions had snowballed to this point of crisis and I’ve had nightmares about the sequence that followed.

Cailyn watched, as I proceeded to take every letter on the fridge out of her reach. I had never seen her so confused and hurt. Still, I was resolute. We went to the basement, where she had an alphabet play mat that she would run around and recite her letters. She LOVED that mat. I began tearing it apart and putting it away. Tears welled up in my eyes as Cailyn held onto what pieces were left and wept.

“Daddy. Q, R, S, T” she repeated at least a dozen times. She didn’t understand that something which made me so proud just hours earlier, was now the source of such agonizing pain. I tore the last remaining letters from her hands, put them in storage, and we just held each other until she fell asleep.

I still remember phoning my dad. I couldn’t get the sentence out before blubbering like a baby. “I think I lost a piece of my soul, tonight.” I said, between gasps for air.

There were giants in the land.


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Waiting is the Hardest Part (Part 3)

Autism, it is. I proceeded to take control and devise our strategy.

We were going to get Cailyn to a pediatrician. She would have a development assessment and would be referred to a specialist for the diagnosis, which would allow us to get therapy and whip this Autism into shape. Since Cailyn wasn’t even two years old, we couldn’t be THAT far behind. We’d have it beat in a few months and be back to normal. Just in time for the baby we just learned would be on the way in May (Dalton gets his own post, later).

One of the few things as stressful as finding out your child has Autism, is to realize how helpless you are without a formal diagnosis. This can take months of waiting. We went through weeks of waiting to transfer doctors, then for an appointment. Finally, we were referred to Nationwide Childrens Hospital. In my limited experience with them, we’ve had endless trouble just getting the referral processed. I decided to get “creative” with my calls to speed her through the intake process. Finally, I was given an appointment for early March of 2011. That wasn’t going to do.

Not willing to sit around and waste time, we got involved with Ohio “Help Me Grow,” who would be able to provide some basic services. It was nice to talk to people who had been through the process but it wasn’t enough to make an impact. We needed a fast-forward button. I began the process of forming a telephonic relationship with the scheduler at Nationwide. I’d call on a weekly basis to ask about potential cancellations and to tell the receptionist about Cailyn. I wanted everyone in the department to know her name.

It was a cold and windy day in late October, when I received a call from one of my new buddies at Nationwide.
“Can Cailyn come on November 17th?” she asked.
“That will work. Keep us on the list in case there is an earlier cancellation, though.” I responded.

In the weeks leading up to Cailyn’s assessment, we did all we could with the limited resources we had. We began the process of labeling Cailyn’s favorite items around the house with homemade flash cards. A second, matching card was placed on a sticky board. The idea was that Cailyn would give us the card that corresponded to the item she wanted. Our primary goal had always been that she could communicate her needs, not that she would necessarily begin talking right away. Still, we had limited success and, in the process, Cailyn had acquired a new and very disturbing trait. She began biting herself when she was upset.

When the big day came, we were all a little under the weather. Not willing to give up our appointment, we limped along the road to Columbus with no real idea what to expect. I hoped to get a formal diagnosis immediately, so that we could get her additional services. Amber was less revealing with her thoughts about the process, so I decided to let it drop and just have a quiet trip.

So began the worst day (at the time) of our lives. Cailyn performed brutally. She had a series of different assessments, each one filled with more screaming, biting, and crying. At the end of the sessions, we were dumbfounded. We still didn’t have an accurate understanding of how bad things were.

We waited for what seemed like an eternity for the doctor to come back for the results. Cailyn was sleeping in my arms, at the time. The doctor asked what we thought was at the root of Cailyn’s problems. I immediately suggested that she had Autism, as Amber remained completely stoic. The doctor confirmed that Cailyn was on the Autism Spectrum. She then ordered a battery of additional tests and made additional referrals to get a more specific diagnosis. Amber barely spoke a word, until we walked out of the office.

“Stop.” she said, as she ran to the bathroom to throw up.


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