My name is Carrie.
I have a son with autism.
He is fifteen.
His name is Jack.
When you have a child with autism, your life is a delicate tightrope. Every day, you stand upon the thin wire, one foot balanced in front of the other, hoping for the smallest step forward. And on the days you don’t move forward, you are grateful you didn’t fall off altogether.
In other words, you take what you can get.
See, we autism parents scavenge for crumbs like ants at a picnic. We are a happy with the leftovers that litter the ground. We rejoice in the idea of a little, instead of it all.
We know we will never have it all.
Maybe it’s fifteen minutes at a family barbecue, or two bites of a new food.
Getting halfway through dinner at a restaurant before asking for to-go boxes.
The first firework blazing across a July sky, then an elaborate duck and weave across so many blankets on the grass, an inconsolable child sobbing in your arms.
You live your life with one foot out the door—rarely finishing an event, or a meal, or a holiday.
Jack makes grocery lists all the time. He likes to put things on it he knows I will buy—graham crackers and cream cheese and even mini marshmallows. He also likes to add things I won’t buy, like Cherry Dr. Pepper and tons of cake mix. Then we argue and negotiate and argue some more. It’s a fun little game we play.
Lately he makes the lists, and then he goes on my laptop and he looks up the items he wants and he compares prices at a bunch of different stores,
When he first started doing this, oh, maybe six months ago, I thought, huh. This is kind of a good project—budgeting and comparison shopping and all of that.
But like everything with my son and his autism, what starts out as sweet and maybe a little endearing and possibly productive quickly becomes a nightmare. It consumes him and it’s all he thinks about and definitely all he talks about and it makes me yell at him to stop already and then I hate myself.
Imagine a soft, cool rain after a dry season. At first, you are grateful for it. It nourishes the grass and helps the flowers grow and, for the most part, makes everything around you lush and green.
Then the rain begins to pelt your face. You can’t get away. It stings your eyes and you can’t breathe and you feel like you might be drowning.
As you stand there, gasping for air, someone hands you a list of groceries and demands you buy Cherry Dr. Pepper in twelve-ounce cans from Walmart.
This, my friend, is autism.
I wanted more for him.
I want more for him.
I want more than lists and grocery stores and soda.
But there may not be any more than what already is.
I have to negotiate.
I have to compromise.
I have to squint through the raindrops, and look for a butterfly.
The thing no one tells you is that autism is not one big compromise, but a series of small, nearly invisible concessions. It is the proverbial paper cut across your palm, only a thousand times over again.
I had to compromise on many things I once held in my mind for this child.
High school diploma, college, graduations, a wedding, babies.
You know what’s worse than compromise?
Not compromise means holding the butterfly so tightly within my hands, his colorful wings turn to dust.
It means forcing him into a life he was never meant to live.
That’s the tricky part, isn’t it? You have to box up the idea of the child he might have been, and understand the boy he is.
And you have to do it while you poor cereal into chipped bowls, and drop shirts off at the dry cleaners, and give the puppy his heartworm medicine.
In other words, life doesn’t stop just because you’re sad your son might not get married one day. You still have to raise your other kids and pick up poster board and remember to buy stamps.
Most days I am fine with it. Most days I go along, tra-la-la, all good and whatever, and then I see one of those lists out of the corner of my eye, and I feel a surge of rage and frustration and bitterness so powerful, it’s all I can do not to rip that paper into shreds.
I root for him. I want you to know this. Every single day, every single hour and minute and second, I root for him.
I clutch my bleeding palm to my heart and I root for all he can be, as opposed to who I thought he should be.
This makes me good, and important, and wise, and selfless, and noble.
Ha! No, it doesn’t. It doesn’t make me any of those things.
It makes me desperate, and frantic, and panicked.
It makes me compromise.
It makes me decide.
I decide to behold this precious butterfly of mine, and honor his colorful flight.
I will take what I can get.
In other words.
I will treasure what he can give.