Tag Archives: autism

Waiting for Wisdom

We’re told not to worry, but what about the big stuff?

If I had more closet space, I’d probably fill it with my anxieties. Maybe I’m just expressing my inner Woody Allen, or feeling the plight of single motherhood. But sometimes I wish I had someone to help me with the really big stuff in life. The weight of responsibilities can press against me until I begin to feel like a 90 year-old woman in an Osteoporosis prevention ad. Take your calcium…or you too will hunch over and spend your life looking at your feet.

I brought Max into the hospital…again. He’s seen this oral surgeon before, as well as several others locally. But when it comes time to go forward with the surgery, I always back out. I’m sure he doesn’t actually need his wisdom teeth removed, and the small extra bonus teeth he grew are just signs of an overachiever. Those are practically trophies. I realize that a lot of people have their wisdom teeth removed successfully. And afterward they eat snow cones, watch a couple of movies, feel sore and swollen and call it a day. But they don’t have autism.

And they don’t have me for a mother.

I worry. I fret. I Google. I think of every possible thing that can go wrong, and try to come up with a solution for each of those imaginary problems. And then I try to envision how I will live with the guilt of having been the one that said yes in the first place, the one who started the whole ball of problems rolling by driving my beautiful son to the hospital in the wee hours of the morning for surgery. It’s hard work being me. After several rounds of this emotional aerobics I finally settle comfortably into denial and say, “maybe we will do it next year…maybe.”

But this time we are going forward. We have a surgery date in July.

When I started writing this blog, I wanted to tell you that it is perfectly okay to be scared, and worry, and fret, and micromanage, and still trust God. Because some situations really are bigger and scarier and more fret-worthy. My son will undergo general anesthesia. He will have several teeth removed that he might need later in life if he wanted to, say, chew. He could have a very difficult recovery and there might only be enough drugs for one of us. Many times Scripture tells not to worry, but this is not my category of worry; everyone knows that worry does not count when it is applied to a situation involving your child. A mother’s worry is part of the perpetuation and protection of the human race. It is as necessary as oxygen.

I knew others would agree. So I sat at my computer and Googled, because genuinely, I need someone to help me with the big stuff in life. First, I came across Benjamin Franklin. He was holding a key and a kite, but it was about to storm so I knew he had plenty of time to talk with me. “Ben, what do you think about my strategy?” I asked aloud as I searched his quotes. “Shouldn’t I have solutions for all the unknowns, for the problems to come, just to be ready?

“Do not anticipate trouble,” Ben said, “or worry about what may never happen. Keep in the sunlight.”

“Sunlight?” I said with my eyes wide as saucers. “Ben, it’s about to storm! And you’d better put that key down or somebody’s gonna get hurt. I’m a mom, I know this stuff.”

Let’s type in Joyce Meyer; she might be available. I’ll just throw her a question while I watch her on YouTube. “Joyce,” I said as I stared into my big shiny computer. “Help me. I know you’ve battled worry. And you’re a mom – you get it. Making back-up plans is just how we roll with autism. We’re not supposed to fly without a net, are we?”

And I heard Joyce say, “Worry is another way of saying I don’t trust God fully. I want to have a back up plan here in case He doesn’t come through.”

I stared at my glossy computer screen wishing we were on Skype, or having tea, or braiding each other’s hair. Then I could tell Joyce that her words are filled with wisdom, but they can’tpossibly apply to my situation – a time when my child is going into surgery. There must be a special dispensation for such circumstances, a piece of gold-stamped stationary with a hand written excuse. Max has never been through anything like this before. There are risks. And I’m scared.

I closed my eyes as if to block out the sound of it, the thought of it. I will do everything I can to insure Max has the best doctor, the best care. I will ask questions. I will bring in extra help. But to think I shouldn’t worry about something as big as this?

That isn’t a reasonable request.

I opened my eyes to the blur of papers cluttering my desk. Something caught my eye, a postcard standing out from the white pages like a patch of blue sky. And I read aloud the blocky hope-filled letters imprinted across the front,

“Be strong and courageous. Do not be afraid. God will be with you and will never forsake you.” From Joshua 1:9

I breathed and sighed and looked up. A little bit of weight began to slip from my shoulders. God is with us; He promises not to leave us. And remarkably, His loving arms are outstretched as if he’s offering to hold the whole messy ball of wax, my anxieties and needs and fears and cactus-like spikes of perfectionism. He’s willing to keep it for me, to put it in His coat-check room so that I don’t have to carry it around.

One by one, I begin to pry my fingers loose. I start to get it. Asking me to let go of worry, even in the really big stuff of life, isn’t a reasonable request. Maybe, instead, it is a remarkably gracious offer.

Emily Colson

The Certainty of Risk

People become part of the healing.

My son Max and I had a terrible experience when we went to the movies last month. Maybe you read about it. Max broke movie theater etiquette and was talking through the previews, laughing too loudly at Kermit. But there was more… he panicked a few times when the volume of the previews frightened him. Autism makes his sensory system fragile. Max would have been ok but the audience was not – they jeered us out of the theater before the feature even began. We never saw the movie, but thousands saw the blog post I wrote after our experience.

Everyone weighed in. Suddenly it felt as if the whole world was sitting in that theater with us. Some threw their arms around us. Others were horrified at the cruel potential of the human heart. Many shared similar experiences. But then there were the others…the people who were outraged that I would bring Max to a movie theater if I knew he might disrupt. I didn’t read all the ugly comments – I learned a few things living through Watergate. I prayed for God to give me wisdom, to give me grace, and like the Cowardly Lion…c-c-courage. I resolved to not let this movie theater experience change the way we live.

But it did.

It was almost three weeks before I summoned the courage to take Max out again. As we sat in our favorite restaurant I studied the waitress – she was new. I sized up the group of teenage girls sitting across from us. I watched the people around us just to see if they were watching us. I felt debilitatingly self-aware, like Junior High only with better skin. I don’t know what was going through Max’s mind, but he appeared more confident than me, so happy to be out on an adventure again. He guzzled down his lemonade and ate his French fries as if he were sending branches through a tree chipper.

And then, just for the sake of evening atmosphere, the restaurant dimmed the lights. And then…turned up the music. Max cringed, dropped his food, and grabbed for his ears. He pressed his hands against the sides of his head and looked at me desperately. I reached across the table for him, fearful that he would cry out, afraid of a movie theater rerun. “Make it quieter, make it quieter,” he whispered to me. I cupped my hands around his sweet baby face, and told him it would be ok. My eyes darted around the room – why did we risk coming out again? I wanted to put up a little force field so that no one would notice us.

But someone did.

She was all the way on the other side of the restaurant, and she was watching Max. And then I saw her nearly sprint toward the hostess desk. This does not sit well when I am dealing with paranoia. I took a deep breath as she made eye contact with me and mouthed some words into the air.

I squinted my eyes to see that it was our waitress. What could she possibly be saying to me? As I caught each word that floated across the restaurant it look as if she where saying, “I – can – turn – it – down.” My eyes widened. And then she reached up to a black box on the wall and the music grew softer again.

Max sat back up and his arms dropped to his sides. All of his muscles loosened. His entire body smiled. I never expect someone to accommodate for our needs; we do our best to fit into the often-treacherous terrain of this world. We aim for our version of success, and always keep plan B, and C, in our back pocket. And every now and then, a kind, strong stranger steps in and throws a few rocks off our path.

I tried to get the attention of our waitress again, but she was already off to another table. When she finally came over, I thanked her profusely. At another time I might have missed such kindness. But when you’ve seen how dark the world can be, the tiniest act of selfless grace can bring true healing to the soul. And remind us that every life has the power to affect another.

“No problem,” she said shyly. I watched her face closely, curiously. I wondered about her own story of hurts and bumps and bruises. Of rocks in her path.

“You are very thoughtful,” I said looking up at her and patting Max’s forearm as if speaking for him too. “And you’re very kind,” I affirmed in a very Mr. Rogers sort of way. I tried my best to press a little more goodness into the hard rocky soil of this world, to give words that might blossom in the heart. I waited for her to respond, wondering if she might need a little healing too. But she just looked down at her notepad and let her thin brown hair fall around her face.

“Can I get you anything else?” she asked. And though she tried to hide it, I know I saw her smile.

Emily Colson

Darkness in a Theater

Update: Emily wrote this post in January of 2014 and has a follow-up piece she wrote in April of 2014. You’ll want to be sure to read “Love to the Max” to see how Emily’s church and community reached out to Max!

We came to see a movie. But I never imagined that we would become the entertainment.

Patty and I found our pre-assigned seats and sunk into the plush leather, with Max sandwiched between us. Despite the exorbitant ticket price, this posh new cinema was completely full. I studied those around us searching for a smile, which is the gold star sticker of acceptance. But no one seemed to notice Max. As we sat waiting for the film I marveled that we could be part of this audience, sitting like everyone else enjoying Christmas with their families. We became something bigger than just us; we were a school of fish moving together in unity, gliding through the deep blue. Max’s eyes darted around the room, his pupils like black pools as the lights dimmed.

“Don’t worry if Max gets anxious in the beginning of the movie,” I whispered to my step-mom Patty. “He needs a few minutes to adjust, and then he loves it.” I felt a little rush of pride come over me, with a desperate hope that it would actually work. Sitting at the movies is one of our hard-earned victories. But after 23 years, I know that life with autism is predictably unpredictable. I clutched my bag under my arm, with Max’s teddy bear peeking out of the top just like the Hollywood starlets carry their Chihuahuas.

The first preview started with eardrum-breaking volume. “I want to go home!” Max shrieked as he folded over his ears. I leaned in quickly, knowing the drill. “It’s ok Max. Our movie will start in a minute. This will stop.” Just as Max was about to completely unravel, our great green friend appeared like an angel on the screen, but with the potential for warts. It was Kermit, as big as a house. Max’s face relaxed, “The Muppet movie!” Max cried out in a jubilant voice that carried unfortunately well with the fine acoustics of the theater. “And Fozzy Bear!” Max laughed nearly slapping his knee. It was apparent that, despite their best efforts, these felt puppets were not bringing joy to the rest of the audience. I leaned into Max and pointed to our movie theater rules. “Whisper voice,” I reminded him.

Finally our feature started, and once again the change startled Max. “I want to go home!” His voice cracked across the silent theater.

But he was quickly drowned out.

“Are you going to make him be quiet?” The older woman next to Patty exploded with aggravation.

Patty leaned toward her and explained, “He is autistic and…”

“I know he is,” the woman shot back as she lunged forward and pounded on her chest. “But why should the rest of us have to suffer.”

“If you don’t make him be quiet,” her husband shouted, “I’m calling the manager!”

I desperately needed an oxygen mask to drop from the ceiling. I couldn’t breath. There in 3D surround sound, my own horror movie began to play.

I threw my hand up toward them in a stop motion. It works for policemen. And I desperately, achingly, wanted it to stop. “Ok. Ok,” I said. “Just give us a minute.” It takes both great finesse and a forklift for Max to leave quickly. My heart leapt into my throat as if it were trying to make an escape before the rest of us. At another time I might have defended our right to be there, but I could hear a strange rumbling of underground thunder. After a minute of dust-flinging commotion, Max stood up beside me, with Patty soon to follow.

And the thunder grew louder.

It was applause for our exit. It was the sound of an angry mob chasing us away with their jeers and taunts.

“And don’t come back,” I heard as we slowly made our way down the stairs in the dark.

I tried to block Max from the view of the crowd, my every step labored, detached, brittle. I wanted to throw my arms around Max to remind him, and everyone else, of just how deeply he is loved. But I couldn’t make my arms work. As we neared the exit, passing center stage, I heard a voice from the back of the theater. It was a man shouting over the thunder of the crowd like a crack of lightening.

“He’s retarded.”

I lost all bearings. I even lost track of watching Max. I stopped and turned toward the sea of faces lit up by the screen behind me. They were colorless, floating, with their little fish eyes watching our every move. The movie must have been showing on top of my silhouette. I don’t know if they could see my hand clutching my heart, my chest heaving for a breath. I tried to squeak something out, but a Boa constrictor had wrapped itself around my throat. I had to find some kind of answer to such cruelty, some memorable response to wash this away.

“There is a lesson here,” I began as I forced my tiny voice forward fearing the movie sound track would suddenly drown me out. “A lesson that is so much more important than anything you will learn from this movie.”

I turned back toward the exit, my arms and legs stiff like metal rods. But just as we were about to walk out, the voice from the back of the room struck again.

“Merry Christmas!” he called to us sarcastically. It was a kick in the back on our way out the door, a final deathblow meant for purely perverse entertainment.

I looked back up at the crowd once more. The little girl in me wanted to storm up those stairs and throw over the monopoly board. Fortunately the grown-up part of me was numb. Plus, I knew I was outnumbered. Just minutes ago, I was a card-carrying member of this audience. And sadly, despite everything that would speak to the contrary, despite my desperate desire for it to be untrue, I knew I still was. I shuddered at the truth of it, at the vile potential of every human heart. Including my own. And then came the strangest sense of clarity, the tiniest bit of perfect peace.

Christmas.

It was a nudge of truth from the Holy Spirit. Even as I share this story with you days later, I feel it. Christmas…when God sent his only Son into the angry lynch mob of the world that groans with self-serving demands and cruelty and hate, to bring us light in our darkness. To bring us healing for our utterly disabled souls. To save us from ourselves – something we cannot do. I couldn’t wait to get my son out of there. But Christmas…Christmas is when God, in his lavish love for us, chose to send His only Son right into this carnage. Christmas is God’s answer to the evil in every human heart.

We stood just a step from the theater exit, my chance for the last word. With my hand still clutching my chest, I scraped up every shred of kindness I could pull together in my fragile splintered self, and breathed words of hope back to the audience, and to myself.

“Merry Christmas,” I whispered.

And the words spilled around us like a little pool of light.

“In Him was life, and that life was the light of all mankind.

The light shines in the darkness,

and the darkness has not overcome it.”

John 1:4-5

Written by Emily Colson