Please Tell, Little Brother

Come, little brother. Sit beside me.

Sit next to me in our fort of blankets while Mom talks on the phone, her voice high and tight.

At five years old, you’ve heard the words she uses so often, you can practically spell them yourself.

Severe.

Non-verbal.

Autism.

These words are the tympani of your background—the song of your everyday.

And me? Well I am the crash of loud brass cymbals, the ka-thunk of an IPad bouncing off the floor, the snap of the light switch as I drown us in darkness.

I don’t like the lights.

Yet at the same time, I am quiet. I do not talk. I spend the day traveling from room to room, wreaking my own special havoc—unmaking beds, turning off lamps, and throwing away the food I refuse to eat because it tastes weird and scary on my tongue.

This is the symphony of our family. It is the quiet-loud-quiet-loud rhythm of autism, punctuated by the grind of the garbage disposal.

I was born on December 6, 2010.

You were born on January 20, 2012.

We are two years apart.

My name is Cooper.

Your name is Sawyer.

We were both born in the middle of winter, and we both have the same white-blonde hair, and sweet round faces. We both like jumping on the trampoline, and watching movies. But that is where our similarities end.

Little brother, you are the child we held our breath for, the trailing question across everyone’s mind.

What if this baby?

What if he has? 

What if it’s worse?

At the same time, you were an iridescent bubble of hope within bounds of despair—a shining beacon of hope inside of a sometimes chaotic home. You did not disappoint.

Your first word was mama. You walked early, and talked often, and pointed and babbled and cooed. You did all the right things at the right time for the right reasons.

Now, at five years old, you are vivacious, and sassy, and funny, and cute.

In the beginning, I wanted nothing to do with you. I ignored you, even though you longed to know me. After a while, you started to ignore me too. Your heart filled with sadness, and you turned away from me.

But slowly, things are changing. Like two hands reaching tentatively toward one another, we have begun to play together a little tiny bit. We jump on the trampoline. We sit in our forts. We watch movies on my Kindle.

In my very own way, I see you. I love you.

You have endured a lot, little brother. You have had birthday parties cut short by my screaming, and trips to the mall for your Halloween costume ruined. You have felt the glare of people’s stares as hot as the sun across your back, and listened to whispers.

What is wrong with that kid?

Why is he screaming?

Why won’t he calm down?

I don’t like lights.

I don’t like change.

I don’t like a lot of people around me all the time or going places in the car or being in the store.

I carry a lot of stuff with me all day long—photographs and puzzle pieces and DVD’s. I line them up in a mysterious order throughout the house and I get upset if anyone moves them.

Through a complicated twist of genetic fate, I became a statistic, while you became a boy. Because of me, our family is one plot on a scatter chart of many. We are a percentage.

It is estimated that one percent of the world’s population has Autism Spectrum Disorder.

Little brother, you are so lucky. Your life will carry on as expected, most likely following the college-job-marriage-child trajectory, while I stand still. Like a rare bird inside a gilded cage, I will remain confined by the constraints autism has imposed upon me.

This is not to say I won’t change. Oh, I will change. It’s true that I will always have autism, but I won’t always be the same. I will change and be different and then the same and different again.

I will grow taller and I’ll try new foods because Mom keeps making me and I’ll find new movies to watch over and over again.

I will surprise you. Who knows? Maybe one day, I will look up, and call out your name.

Sawyer!

In the meantime, I have a favor to ask you. It is a big favor. It won’t be easy, but I hope you will do it anyway.

I need you to be my voice. I need you to use the words I do not have, and tell the world all about me. Grant me freedom beyond autism’s golden fetters.

You see, you are not only my brother. You are everyone’s brother. You are one of many who live alongside autism—who hear the IPads bounce and watch the raging tantrums and feel the awkward stares upon their backs as strangers work to make sense of our life.

Tell them autism affects one out of sixty-eight children every year.

Tell them it is a neurological disorder characterized by rigidity, challenges with social interaction, and difficulty with communication.

Tell them how happy I am.

Tell them how smart I am.

Tell them how much I love to swim and the way trains make me smile and that I can be really, really stubborn.

Tell them how I carry hundreds of photos around with me all day. Tell them about the time I snuck one to school of Mom drinking a beer.

Tell them everything you do and don’t understand about autism.

Tell them almost everything I do has a purpose, even if it’s not obvious.

Tell them my pictures and my puzzles and my DVD’s are a universe all my own. They are like a soft blanket on a cold day in the middle of Minnesota. They bring me comfort, and warmth, and security.

Tell them that you have no idea why I turn all the lights off all the time.

Tell them the way I am constantly changing and evolving, and how you and Mom and Dad never-ever-for-a-second-even-once gave up on me. Tell them about how our home is filled with hope.

Tell them I am not broken.

Tell them all the things I cannot say for myself. Round out my rigid lines until I, too, am a whole boy.

And when you are done with all of the telling, they will know. They will know about the life of two brothers in the American Midwest. They will know we are doing the very best we can.

They will know that sometimes, even a caged bird can sing the loveliest song.