Autism Spectrum and the Things That Break

Life with our son on the autism spectrum teaches us many new things every single day. We have learned about strategies for navigating difficult behaviors. We have learned about coping skills. We have learned to manage our expectations in order to protect ourselves from disappointment. We have learned to navigate a life filled with evaluations and assessments and third party opinions. We have learned that nothing around us is free from the autism in our lives.

Not us. Not our life. Not our house. Or any of the things inside of it.

This journey is teaching us not to get too attached to things. Because things break. Things shatter. Things rip and tare and unravel at the seams. Things are tossed around carelessly. Things are thrown in anger. Things are dismissed and disregarded without much thought. Things get lost in the moment. Things cause problems and need to be removed. Things are often temporary; and attaching to them only makes it harder down the road.

When we first moved into our home I had so many ideas for projects and updates in my head. And just four short months later our son was diagnosed with autism spectrum disorder at age two. It is amazing how quickly ideas change. Just how fast projects are pushed to the side. Life in our house became less about updating and more about repairing damage. Damage that did not exist when we moved in.

You may walk around my house and see a typical family home. But our home is anything but typical. Take a closer. Look at the things that I ordinarily do not want you to see.

Look at our living room TV and notice the acrylic screen protector. This is our 3rd television in this room in two  years. The first two were victims of my son’s juice cup in a moment of rage. The first time is happened out of nowhere. He was sitting happily on the couch and in a split second his mood changed and he whipped his cup at the TV. The second time he got angry because I left the house in the “wrong” car. He needed me to drive our gray car, my husband’s car. My decision to leave in my own car, the red car, cost me a television.

Look at our Ipads and phones and notice the hundreds of dollars in protective cases. Cases that we put to the test every single day. Cases that have failed us three times before. Ipads thrown because the video did not load fast enough. Phones slammed because the volume was not switched on. Valuable and expensive electronics tossed around without a care.

Look at the walls of our home and notice the disrepair. Our home is filled with holes. Even the patched holes still look broken. Maybe that is because we are too busy or tired to really repair the holes. Or maybe it is because no matter how good the repair job my eye will always know what lies behind the surface.

Wreckage. Fragments. Remnants of the broken things.  The hidden scars of a life along the autism spectrum.

And each time we stair at the static screen of a broken electronic or the vast opening of a fresh hole in the wall; we cannot help but feel like we should be doing better. We should be catching the behaviors. We should be saving our possessions from this journey.

But we cannot. Nothing is safe. Nothing is free from the autism in our life.

Sure, they are just possessions. And to some extent it is normal for things to break. But something else breaks too. Maybe it is my spirit. Maybe it is my heart. But something inside of me breaks when I watch my son destroy the possessions in our life.

There is a feeling that hits you deep in the pit of your stomach when something valuable breaks. A feeling you all but choke on. In the blink of an eye hundreds of dollars turned to nothing. Garbage. Waste.

And after living long enough among holes and discarded pieces of past possessions; you learn to detach from the broken things. And then things all together.  Because things break. In our house things break more than usual. And to protect our hearts from the sadness of the breakage; we have learned that we cannot attach to things.

Our house is still filled with projects and ideas and updates. But those projects will have to wait. Those ideas will remain in my head. The needed updates will grow more and more out of date.  Because in the moments of time when we are not working or parenting or adulating through the laundry and cleaning; we are repairing the broken things around our house.

We live along the autism spectrum with our son. And here in this space that we call a home we feel the weight of this journey every single day. We see it in the things that our eyes can see. And, we see it in the things our hearts know lie just behind the surface.

We see it. We feel it. We live it. Every single day. Things break. Possessions. Spirits. Hearts. But somehow our will remains intact.

And so we will ourselves forward. To live among the broken things. To face another day.



A Letter to my Beautiful Boy on his Birthday.

My beautiful, strong boy. I am not sure how it is possible that you are 5 years old.  I blinked my eyes and here we are. And while I sit here is disbelief that 5 years have passed us by, my heart knows that we have lived every single moment of those 5 years.

We have celebrated the wins. We have endured the pain. We have called on each other to be so much more than we thought we would need to be. And one day at a time we have walked this journey.

On May 1, 2012 you entered our world exactly on your due date. Just as scheduled. Just as planned. It was the first and last time you ever did something according to plan.

Well, according to my plan.

The past 5 years have taught me that you are unrelenting in pursuit of your own plan. A trait many might say you got from me. You see your plan so clearly. You approach every moment of life with such a profound courage and conviction. You see the world the way you need it to be. First you see it in your head and then you set out to recreate that world.

I have not seen a single hurdle you are unwilling to climb. A single barrier strong enough to keep your willful spirit at bay. You charge into the world fueled with determination and intention. It is a force to be reckoned with. You, my beautiful boy, are a force to be reckoned with.

Sometimes life is frustrating. You do not understand why things are not always what you need them to be. You push harder. Sometimes watching you push so hard makes me feel proud. And sometimes it makes me feel sad. And sometimes watching you push makes me feel afraid.

Your intensity is unwavering; and that can be hard to watch. Sometimes it is scary.

I want so badly to wrap my arms around you. To tell you that we will try again another day. But, it is hard for you to walk away. It is hard for you to forget. It is hard for you to move forward. You stay frozen in that moment. Until everything is just the way you need it to be.

It is safe to say that you teach me more about life and love every single day. It is also safe to say that I love you a little more every single day.

I love the way your smiles radiates through a room. The way your giggle electrifies the world. I love the way you entertain us with your humor and your sarcasm.

I love your intuition. Your instincts. Sometimes I watch you on the trail of a discovery and I am amazed a just how well you read every situation you encounter. The way you walk into the room and immediately catalogue everything around you. The way you respond when something is off. The way you explore and investigate. The way you arrive at timely and thoughtful conclusions.

I love your unrelenting spirit. Your commitment. Your ability to work an entire room without breaking a sweat.  You are a master negotiator. You know how to close a deal; and you usually come out on top.

I love the way you capture the hearts of everyone around you. The way you captured my heart. The way you capture and recapture my heart every single day.

I wake up every morning and promise myself that I will give you my very best. And I promise that I will empower you to be your very best too. And sometimes we go off-track. Often we are less than perfect. Many times our “best” slips away in the grind of our everyday struggles. But we guide each other back.

Together we have walked this journey through the first 5 years of your life. And together we have learned that perfect is boring. And we, my sweet boy, are anything but boring. We get it wrong. We commit to work a little harder. And through hard work and lots of love we eventually get it right. We are forever a work in progress.

I know that there are more lessons to learn. And more lessons to teach. I know that there is more love to give. And more love to receive. I know that there will be challenges and obstacles. But I also know that there will be big wins. Monumental celebrations. More signs of a journey well-traveled. A life well-lived. A boy well-loved.

I wear each of your birthdays as a badge of honor. A victory won. A step away from the obstacles of the past year. A step forward.

5 years ago I gave you life. And in every moment since then you have given so much wonder and purpose and love to my life. And here we are on the brink of another year. A year that will surely be filled with love and success and surprise and challenge and fear and pain. Because life is all of those things.

Never perfect. Never boring. Just beautiful, messy life. Your life. Happy birthday to my beautiful boy.



Too Many Things I Will Never Know About My Son’s Autism.

Each day I have a deeper understanding of just how little I really know about my son’s autism.

I am not talking about symptoms and treatment options. I know those things. Those things are easy to learn. I can read them in a textbook or talk about them with a doctor.

But there other things that I do not know. Other things that I will never know.

I will never know how it feels for my son to experience life with autism. I cannot hear sounds the way he hears them. I cannot see color and light the way he sees them.  I cannot experience touch and feelings the way he feels them.  I cannot interpret words and phrases the ways he interprets them.

I live in a constant state of wonder. I wonder about my son’s world. What does it look like? Sound like? Feel like?

When I close my eyes I try to imagine his world. In his world I know that everything has a place and a purpose. There are no senseless rules. No social guidelines. No need for unnecessary words and sounds. No extra fuss.

I want to imagine his world as a simple place. Quiet. Happy. Peaceful. But, I cannot see it that way. Because my son does not live inside of his world in a bubble. He lives inside of his world, inside of our world. And that is anything but simple.

Each day my son sorts through all of the pieces; pieces of his world and pieces of our world. He learns the ways that they are different. And, the ways that they are the same. He learns each of the pieces inside and out. And then he tries to put them together.

Together, but never really whole.

Because there are pieces from his world that do not work in our world. And there are pieces of our world that do not work in his world.

I see this play out every day as he lives his world inside of our world.

Something as ordinary as getting a haircut is anything but ordinary for my son. Getting a haircut is extremely difficult.  He does not like anything about it. The sound. The touch. The lack of control. Getting his haircut causes a physical reaction. His body tenses. He sobs real tears. He winces in fear in anticipation of each cut. He fights every snip. He loses the ability to breathe and calm down. We cut his hair 10 seconds at a time. We cut the hair away from his eyes and out of his ears. We cut until we cannot endure anymore. And then we stop. We hold him in our arms and we help him calm down. Often he is angry with us. He wants to hit us and push us a way. And we understand that. So we give him the space he needs.

Getting a haircut is just a part of our world. But is does not work in his world. In his world it is terrifying. In his world the sensation of hair touching his skin is painful in a way that we have never experienced pain. And I do not know that because I have experienced it myself. I know that because I have watched him experience it. And as I watch I am reminded that I will never know what it feels like for him.

And just as he struggles with the activities of our world; he struggles with the words in our world too.

He cannot understand our rules. At school he is told that he cannot go into the girl’s bathroom because the girl’s bathroom is for girls only. But in our life at home he comes into the girl’s bathroom with me all the time. He cannot understand the contradiction. His black and white world cannot process the “exceptions” to the rule. The rule does not make any sense to him. And who is going to follow a rule that they cannot understand? So he runs. He makes a game of going into the girl’s bathroom. He is laughing, but he is not laughing at our expense. He is laughing at our rule. Because our rule does not make sense to him, and he thinks we are pretty funny to have such a stupid rule.

But rules are a part of our world. And even though our rules do not make sense in his world; he must learn to live by them. And so we will teach him to live by them.

I am here. I am sitting right next to him. I am holding his hand. I am rubbing his back. I am squeezing him tightly. I am rocking him in bed. I am singing softly to comfort him. I am backing away. I am giving him space. I am observing his actions. I am protecting him. I am protecting others from him.  I am listening to his words. I am helping him to find the words he cannot find on his own. I am explaining things that do not make sense to him. Things that do not always make sense to me.

I am here beside him, but that will never be enough. I will never know all I want to know about my beautiful boy and his beautiful world.

I will never experience life the way my son does. And he will never experience life the way I do. And here we are. Beside each other. Two people from two different worlds learning to live together. Together, but never really complete.


“Faith is seeing light with your heart when all your eyes see is darkness.”

-Barbara Johnson