Tag Archives: Hope

To Fall but not Fail


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

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

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

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

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

Cailyn sat on the bottom step and just kept yelling.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_0780

Advertisements
Tagged , , , ,

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.
IMG_5151

Tagged , , , , , , , , , , , , ,

Flawed with Intention


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

“Did you hear about Ryan?”

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

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

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

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

“Guys…It doesn’t hurt, anymore.”

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

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

Ryan looked at him, completely confused.

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

The doctor wasn’t exactly buying his story.

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

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

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

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

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

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

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

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

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

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

20120328-202858.jpg

Tagged , , , , ,

The Anatomy of Fear


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

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

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

“Hit the red emergency button.”

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

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

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

“Could this happen again?”

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

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

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

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

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

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

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

20120320-201532.jpg

Tagged , , , , ,

A Picture’s Worth


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

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

Just prior to the Autism diagnosis, the videos stopped.

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

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

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

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

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

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

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

Then what is a picture’s worth?

Tagged , , , , ,

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.

Tagged , , , , ,

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.

Tagged , , , , , ,