A New Chapter

I never thought it would come to this. That is the truth. I guess I always hoped for the best. 

I mean, a small part of me knew deep inside, but I never gave it a whole lot of thought.

I didn’t think about it while I was researching preschools, or trying to read his IEP.

I didn’t consider it when I chased him around the dinner table, or when I chased him through the neighborhood, or when we chased the light of early dawn.

Guardianship.

I don’t think anyone plans for this. No one holds their new baby in their arms and plans for a life of caretaking, and dependency.

No one watches their teenager walk up the driveway carrying the mail, and ponders the best way to manage his health records and financial decisions when he turns eighteen.

It will break him.

You see, my son Jack has the kind of autism where he wants all the things everyone else wants—friendship and freedom and an apartment with a couch and a big flat screen television.

He wants to get in a car and drive to the store and buy his favorite ice cream. 

But he doesn’t know how to get them for himself. He has trouble putting the pieces together. 

And autism’s co-pilot, anxiety, doesn’t exactly help matters. In fact, I’ve often thought that it isn’t autism that gets in Jack’s way, but the crushing anxiety he experiences every waking moment of every day.

A snake, who chokes the air from his spirit.

A wolf, with wild eyes, and long yellow fangs.

The Cheshire cat, all beckoning finger and sly smirk.

Jack has the kind of autism that make weekends feel long—days starting at 6:00 am and stretching into an eternity of questions, and pacing, and repetitiveness.

On Saturday, he makes busy work for himself. He checks the bathrooms to make sure there is toilet paper. He changes the batteries in the remote control. He writes grocery lists and tapes them to the inside of the cabinet. 

On Sunday, he wakes up, and he does it all over again.

He has worked so hard, that’s the thing. He has done everything we’ve asked of him. Sure, there was, uh, some resistance at times. Then after he screamed and stomped and insisted it wasn’t fair he had to pack his own lunch, he took out the bread and made himself a sandwich. 

He has come incredibly far. But it is not far enough.

We have turned to medication to quiet the wolf/snake/sly cat, but it’s not enough.

The sandwiches, the batteries, the lists are not enough.

None if it is enough.

How do I possibly tell him all of this? And when?

Autism and time are the ultimate balancing act, you see. Too much time, and he’ll obsess and worry. But to spring it on him at the last minute feels very unfair.  

A long time ago, I gave myself permission to experience all of the sensations autism brings me.

Hope.

Disappointment.

Joy.

Grief.

Fear.

Love.

I’m not entirely sure how to name the sensation I feel when it comes to assuming guardianship for my son.

Dread

Anger.

Sadness. 

I don’t know how to tell him.

His favorite ice cream is chocolate. He has a bowl every night after dinner. 

He’s worried our town will cancel trick-or-treating. Every day, he checks the news. 

Dear Jack,

I’m writing you this letter, in case I mess up when I try to talk about it. This way you can go back and read all the things I meant to say.

First, I want to say that I love you.

I want you to know you have done everything right.

Today you are sixteen-and-a-half. Or, as you would say, 6,022.5 days old.

I want to talk to you about something.

When you turn eighteen, Daddy and I will apply for something called guardianship.

The three of us will stand before a judge. We will fill out some paperwork. 

You will say your name, and sign the forms. 

Nothing will change, really. We’ll simply help you with doctor’s appointments, and figuring out where to live, and with stuff like your bank account.

I know. 

I know this isn’t what you want. 

I know, all this time, you waited and planned and hoped for a life of your own.

Hope is heavy. It can weigh us down, like a bag of rocks strapped to our back. 

It’s not your fault. We are simply following autism’s timeline.

It’s not forever. 

It might not be forever.

Think of it as a new chapter, like in a book. It is not the end of your story.  

My Jack-a-boo.

I will take care of you. I will fight, every minute of every day, for what is rightfully yours. 

In the meantime, let me carry some of the rocks. 

You, my son, are exactly who you need to be right now. 

You are enough.

You make me so proud I can hardly breathe.