Tag Archives: Children

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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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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The Anatomy of Fear


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

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

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

“Hit the red emergency button.”

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

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

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

“Could this happen again?”

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

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

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

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

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

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

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

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