Let Me Tell You

Let me tell you about my son.

His name is Jack.

He is seventeen years old. 

He wears glasses and he likes the color blue. He almost always orders a cheeseburger when we go out to eat and he is very, very specific about no lettuce or tomato.

He has autism.

Autism affects the way he eats, sleeps, talks, thinks, and learns. 

He is considered special needs, because his needs are special.

He needs medicine for anxiety.

He needs something called an Individualized Education Plan to succeed in school.

He needs to listen music in bed before he goes to sleep at night.

My son has autism. 

It’s easy to understand the who and the what and the where and the how of it all.

My child has autism and it is in his brain and his heart and his soul and his body. It is the result of a complicated mutation in genetics and DNA.

But why?

Why does he have it?

Let me tell you about my son.

He hears background noise at the same level he hears foreground noise. 

This means if a teacher is speaking at the same time a dump truck trundles down the street outside, the rumble and the words get all mixed up together. 

People often ask if he is high functioning. 

It’s hard to say. 

According to the research, high functioning autism means an IQ of seventy or more.

It has a larger risk of anxiety, and depression, and is characterized by a devotion to routine and order.

Some are overwhelmed by social situations and talk too loudly.

Others shut down, and retreat. 

Some do well in school, others do not.

Some can hold a job, others cannot.

So which is he—a some or an other?

I may never know. 

He can make a frittata from a recipe but was unable to stay in public school.

He avoids people but loves to plan parties.

He hates loud noises but he talks loudly and makes the biggest racket in the morning you have ever heard from a human being. 

Let me tell you about my son.

He knows within seconds if someone is sincere. I have no idea how. He can tell if a person wants to talk to him for autism’s sake, or for Jack’s sake. There is a difference, you see.

Some want to fake-talk with him so they can go home and sit at the dinner table and gloat over green beans about how they met a nice boy who had autism and it was all very good, really.

Others stop what they are doing, and hear what he has to offer.

It takes exactly one second for him to tell the difference. If it’s the green bean scenario, he just turns around, and walks in the other direction. If it’s the other way, he begins to share.

It’s like watching the ocean meet the shore. The waves lean in close and whisper. They say listen, buddy. I know how many grains of sand you have in your soul.

Let me tell you about me.

I am his mother.

I am his advocate.

I am his appointment-maker, his driver, and sometimes his voice.

I worry what will happen when I die.

I worry I don’t have enough patience for this.

I worry the world will just chip away at him until there’s nothing left. 

Let me tell you about my son.

Stuck.

This is the word that comes to mind. 

He is stuck.

At this moment, he is stuck upon autism and anxiety’s hamster wheel. 

He is loud, and frustrated, and rude, and unhappy.

Do you know what it’s like to have an unhappy child?

When it comes to autism, there is no such thing as a simple day, or an easy explanation.

There is no such thing as normal.

Asperger’s, high functioning, severe, quirky, complicated, somewhere on the spectrum. In the end, it doesn’t really matter. 

It’s easy to assume we all want the same things in life. Friendship, marriage, children. Career, promotion, retirement.

He doesn’t want everything I want.

I remind myself tt’s okay to want different things. It’s okay if he’s happy with a different life. 

After all, a life lived differently is not a life less lived. 

Yet after living alongside autism for seventeen years and watching is heart break and heal over and over again, I forget this central truth.

I want to be better. 

I just don’t know how. 

I do know this: once in a lifetime, you get the chance to meet a person who is unlike any other person you have ever met.

A person who is complicated, and honest, and tenacious, and pure.

This person, well, he changes who you thought you were.

And who you planned to become.

He is traveling a lonesome journey of one, yet changing the lives of many.

He is a boy named Jack. He is my child. He is my son.

I love him fiercely.